Assistive and Mainstream Technologies for People with Disabilities

As she nears her 70th birthday, Ms. G has increasingly severe arthritis in her hands. She is feeling more and more restricted in her everyday life as daily tasks have become difficult or painful and many products—from the kitchen blender to the little pencils for filling out election ballots—have become hard or impossible for her to use. Recently, during an urgent visit to her physician’s office after she sliced her hand with a kitchen knife, she had to see the practice’s new partner. She explained that the knife had slipped because it was hard for her to grasp it firmly. The doctor asked whether she had heard of the knives and other ordinary household tools that are designed to be easier—and sometimes safer—for everyone to use. Did she have a computer so she could find out more from groups that had practical advice about technologies and other strategies for people with arthritis? Ms. G said she did. The doctor jotted down a note for her and added “You should check out these two web sites for information about equipment and other Internet resources for people with arthritis and other conditions. Unfortunately, though, you can’t buy your own voting equipment.”
As this story illustrates, people with conditions such as arthritis may encounter the myriad technologies of modern life in somewhat different ways than people without disabilities. Doorknobs, kitchen tools, or shirt buttons that do not produce a second thought for most people can become obstacles for someone with arthritis. In turn, a lever door handle substituted for a doorknob may be a significant aid to that individual—and also be welcomed by many others, such as parents juggling packages and children. A simple buttonhook device, although not useful to most people, can assist someone who finds it difficult to manipulate buttons. Thus, although certain technologies create obstacles to independence for people with disabilities, other technologies—some of which are designed to accommodate impairments and some of which are designed for general use—provide the means to eliminate or overcome environmental barriers. These helpful technologies may work by augmenting individual abilities (e.g., with glasses or hearing aids), by changing the general environment (e.g., with lever door handles or “talking” elevators), or by some combination of these two types of changes (e.g., with computer screen readers).

Given the projected large increase over the next 30 years in the numbers Americans at the highest risk for disability, as discussed in Chapter 1, designing technologies today for an accessible tomorrow should be a national priority. Otherwise, people who want to minimize the need for personal assistance from family members or others, who want to avoid institutional care, who want or need to work up to and beyond traditional retirement age, or who have talents to volunteer in society will face avoidable barriers that will diminish their independence and role in community life. Accessible technologies are also a matter of equity for people with disabilities, regardless of age. One of the goals of Healthy People 2010 is a reduction in the proportion of people with disabilities who report that they do not have the assistive devices and technologies that they need (DHHS, 2001; see also DHHS [undated]).

Since the publication of the 1991 Institute of Medicine (IOM) report Disability in America, the world of assistive technologies has changed significantly in a number of areas. Perhaps the most dramatic advances involve the expanded communication options that have accompanied the improvement and widespread adoption of personal computers for use in homes, schools, and workplaces. Spurred in part by federal policy incentives and requirements, industry has developed a range of software and hardware options that make it easier for people with vision, hearing, speech, and other impairments to communicate and, more generally, take advantage of electronic and information technologies. In many cases, these options have moved into the realm of general use and availability. For example, people who do not have vision or hearing loss may find technologies like voice recognition software valuable for business or personal applications. Prosthetics technology is another area of remarkable innovation, with research on the neurological control of devices resulting in, for example, prosthetic arms that people can move by thinking about what they want to do (Murugappan, 2006).

Research suggests that assistive technologies are playing important and increasing roles in the lives of people with disabilities (see, e.g., Russell et al. [1997], Carlson and Ehrlich [2005], Spillman and Black [2005a], and Freedman et al. [2006]). For example, using data from the 1980, 1990, and 1994 National Health Interview Surveys, Russell and colleagues (1997) concluded that the rate of use of mobility assistive technology increased between 1980 and 1994 and that the rate of increase was greater than would have been expected on the basis of the growth in the size of the population and changes in the age composition of the population. A more recent analysis by Spillman (2004), which examined data from the National Long-Term Care Survey (for the years 1984for the years 1989for the years 1994, and 1999), found that the steadily increasing use of technology was associated with downward trends in the reported rates of disability among people age 65 and over. Other research, discussed later in this chapter, suggests that assistive technologies may substitute for or supplement personal care. Surveys also report considerable unmet needs for assistive technologies, often related to funding problems (Carlson and Ehrlich, 2005).

Findings such as those just cited suggest that the greater availability and use of assistive technologies could help the nation prepare for a future characterized by a growing older population and a shrinking proportion of younger people available to provide personal care. The increased availability of accessible general use technologies is also important.

Chapter 6 pointed out that people with disabilities encounter technology barriers in many environments, including health care. As surprising as it may seem, individuals with mobility limitations and other impairments may find that examination tables, hospital beds, weight scales, imaging devices, and other mainstream medical products are, to various degrees, inaccessible (see, e.g., Iezzoni and O’Day [2006] and Kailes [2006]). Chapter 6 urged the stronger implementation of federal antidiscrimination policies and the provision of better guidance to health care providers about what is expected of them in providing accessible environments.

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UNITED KINGDOM

Disability in Older People

On this page

oPatientPlus articles are written by UK doctors and are based on research evidence, UK and European Guidelines. They are designed for health professionals to use, so you may find the language more technical than the condition leaflets.

There are separate, related articles Prevention of Falls in the Elderly and Prescribing for the Older Patient.

The UK population is ageing. Disability in old age is frequent and lowers quality of life, and demands resources for care and rehabilitation. Both mental and physical disability predispose to admission to hospital, need for residential care, and premature death. Helping to combat disability in the elderly can improve quality of life. Prevention of disability in the elderly is a matter of humanitarian and economic concern.

Standard Eight of the National Service Framework for Older People is concerned about "the promotion of health and active life in older age". Limiting disability in older people is in line with this standard.^[1]

Some definitions

The World Health Organization has defined disability as the following:^[2]

"Disability is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person's body and features of the society in which he or she lives."

Activities of daily living (ADLs) include personal-care activities such as eating, bathing, dressing, and using the toilet.

Instrumental activities of daily living (IADLs) include household chores, shopping, managing medication, climbing stairs, public transport, finances, and walking. They can be affected by cognitive impairment.

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Epidemiology

The number of people aged 65 and over is estimated to increase by 65% in the next 25 years, with a doubling of the number of people aged >85 years. Managing older people's health effectively will be important.^[3]

The evidence for people aged <85 years tends to suggest that disability in the elderly is reducing, despite an increase in chronic diseases and conditions. For people aged >85 years, the trends regarding disability are less clear.^[4]

Aetiology

According to Canadian research, five types of chronic illness contribute largely to disability in people aged over 65 years:^[5]

Foot problems
Arthritis
Cognitive impairment
Heart problems
Vision

Disability Air Travel Information for Seniors and Disabled

Publications

Printable Page
ScreenReaders

Travel by air for people with health issues, handicaps, disabilities or special needs, can be challenging. The following air travel tips will help make your flight and trip, whether domestic or international, easier, cheaper and safer.
When making your travel reservations, request any carts, wheelchair services or any other transportation you'll need. Fully describe your limitations and needs. Get your airline ticket and boarding pass well ahead of time so you don't have to wait in any lines. You'll be able to arrange travel at a discount, get better travel deals, and avoid last minute travel headaches.
Talk with your airline representative or travel agent regarding the type of restrooms that are on the airplane. Call your airport and find out as much information as possible about the restrooms and handicapped parking at the airport.
You'll need to find out how you'll be boarding the airplane at each of the airports involved in your trip. You may need another type of airplane or alternative route so you'll have Jetways, or jet bridges, into the plane from the airport and not have to worry about stairs.
Air Travel Tips:

Think about what seat arrangement will work best for you needs. Would an aisle seat make it more convenient to get to the restroom? You'll want to avoid sitting in the emergency exit row. The passengers in this row may be asked to help others in an emergency situation.
Let the airlines and flight attendants know if you have any assisting devices. Find out the best way to store them so they arrive without damage.
Always keep in mind what you can do easily and without assistance, as well as situations that would require help.
Can you transfer to seats by yourself? Will you need a transfer board or assistance from airline staff?
Consider hiring a travel nurse if you have serious health or medical issues. There are traveling nurses networks.
Can you describe your wheelchair, scooter or walker, dimensions, weight, type of tires, type of batteries, etc.? You may need to take along spare batteries. You also may need to rent or buy a travel wheelchair.
Make sure to mention to your travel agent or airline representative any assisting devices you may need or already have like canes and crutches. Do you need a slow pace or are you a slow walker?
If you will be traveling through different time zones, how will jet lag affect your situation?
Consider how the following will be of concern during your trip and discuss with your travel agent: upper body strength, communication ability, speech issues, voice issues, vision problems, hearing problems, heat issues, medication needs, oxygen requirements, and dietary requirements such as gluten-free meals.
Try to arrange or book your air travel through experienced travel agencies or tour operators that specialize in disabled travel. There are a large number of agencies throughout the U. S., Canada, Europe, Australia and many other countries.
Just in case you need them, it's also good to know if there are any travel agencies that specialize in disabled travel at your destination, for return travel, local resources or travel services.
At the airport let airline boarding personnel know that you may need extra time to board the plane. Sit close to the door at the gate so you're called first and then board at a comfortable pace.
After the plane has landed, never get off the plane until you see or have your assisting device, wheelchair, travel wheelchair, etc. Flight attendants have to stay on the airplane until the last passenger leaves. They will help you while you're on the plane but once you're off the plane they won't be able to help you.
Make sure you carry your medications and back-up prescriptions with you onto the plane, along with doctors' names, addresses, fax numbers for faxing prescriptions, phone numbers, medical diagnosis, names and dosages of medications you're taking and any allergies you have.
Photocopy passports, airline tickets, American Express Travelers Cheques, credit cards, any important papers.

United States TSA Security Screening for Persons with Disability:
The United States TSA has established a program for screening of persons with disabilities and their associated equipment, mobility aids, and devices. All disability-related equipment, aids, and devices continue to be allowed through security checkpoints once cleared through screening.
Disability-related items permitted through the security checkpoint include:

Casts
Crutches
Wheelchairs
Support braces
Service animals
Ostomy supplies
Orthopedic shoes
Prosthetic devices
Support appliances
Baby apnea monitors
Augmentation devices
Exterior medical devices
Assistive/adaptive equipment
CPAP machines & respirators

Canes
Walkers
Scooters
Hearing aids
Slate and stylus
Cochlear implants
Braille note takers
Tools for prosthetic devices
Personal supplemental oxygen
CO2 personal oxygen concentrators
Medications and associated supplies
Tools for wheelchair disassembly/reassembly
All diabetes related medication, equipment, and supplies
Any other disability-related equipment and associated supplies

NOTE: Carry your health insurance information with you on the plane. Know what you'll do if you encounter a health problem or medical emergency on your trip. Get travel insurance to ensure less costly medical assistance. These emergency bills may not be covered under your health insurance policy. It'll ease your mind to have this back-up travel insurance and prevent costly emergency medical charges on your trip. Emergency medical costs can run considerably higher than standard medical fees.

- See more at: http://www.disabled-world.com/travel/airlines/#sthash.I7DlY0sJ.dpuf

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FIRE SAFETY 4 DISABLED/AGED IN YOUR HOME- HOW 3 PREPARE

Accessible Housing by Design — Fire Safety for You and Your Home

Universal Design

People who inhabit and visit our houses come in all shapes and sizes, range in age from infants to seniors, and possess various ever-changing abilities and skills. As we grow up, grow old and welcome new people into our homes, our housing needs change. A house that is designed and built to reflect the principles of universal design is safer and more accommodating to everyone who lives in or visits it, regardless of age or physical ability.
The philosophy of universal design is that your home should be comfortable, pleasant, safe, and usable by everyone in the family, be it your children, you or your spouse, aging parents or a relative with a disability. Planning for fire and emergency situations and minimizing the potential for accidents help ensure that your home and family are safe.

An overview of the key concepts of universal design is provided in “The Principles of Universal Design” text box at the end of the document.

Meeting Your Needs

People are injured or put at risk every year because they have not taken the time to consider what they will do in an emergency. There are many quick and easy steps that you can take to prevent fires in your home. There are also measures you can take to prepare yourself in the event of a fire or emergency.
Unfortunately, according to the Ontario Fire Marshal (2008) people with disabilities and seniors are more likely to be injured in a fire than other members of the population. This is often because they are unable to exit their home quickly or independently, they cannot hear the alarm or they are not prepared with a fire safety plan.

It is your responsibility to plan for your personal safety.

Consider Your Needs When Confronted With an Emergency Situation

Are you able to hear the fire alarm from all rooms in your house?
Are you aware of what you should do if a fire occurs?
Do you have appropriate smoke detectors and fire alarms?
Are you able to evacuate independently?
Have you made the necessary arrangements if you need assistance to evacuate?
Do you and all of your family members know what to do in an emergency?
Have you made a fire safety plan?
Do you need backup power for an elevator or a ventilator?
Are you able to communicate easily during an emergency situation?

Fire Safety Planning

Talk to Your Fire Department

Some fire departments maintain a registry of people who require extra assistance in the event of a fire; inquire with your fire department.
Talk to your fire department about your personal situation and seek assistance in developing your own fire safety plan.
Talk to your fire department about how best to communicate in an emergency.

Are you registered with your fire department? Some fire departments maintain a registry of people who require additional assistance in the event of an emergency.

Consider Your Abilities

Consider the abilities of your family members and guests and how these abilities may impact their capacity to communicate and evacuate your home in an emergency. Babies and children rely on adults for their safety. People with temporary disabilities such as broken limbs may not be able to move quickly.
People who are elderly may become less confident and more easily confused. We all experience changes during our lives, some of which may impact the way our fire safety needs are met.

Install Appropriate Warning Devices

Smoke alarms are necessary features in every home. Your local fire department can advise you on the best types to purchase and where they should be installed.
If you are deaf or hard of hearing, note that smoke and fire alarms are now available with combined audible and visual signals, which will flash a light and make a loud noise. These smoke and fire alarms are suitable for installation throughout your home. It is advisable to install strobe alarms as they flash more brightly, or use vibrating alarm systems in areas where someone with hearing loss may sleep.

Make Your Home Fire-Safe

Your local fire department and provincial Fire Marshal’s office have information on how to plan for an emergency situation. Standard advice includes:

Always having a fire extinguisher readily available.
Keeping stoves and fireplaces tidy and clean.
Keeping fire evacuation routes clear of clutter.
Planning two evacuation routes.
Refraining from overloading electrical outlets.

If you have an activity limitation or disability, you may need to take the following extra precautions.

If You Have Low Vision or Are Blind:

Keep your cooking area well organized and free of clutter.
Keep your hallways and corridors clear.

If You Have a Mobility Disability:

Design your kitchen so that you do not have to reach over your stove to turn it on or to reach into the cupboard.
Install a fire extinguisher where you can easily reach it.
Install an electrical outlet at the front of the counter for easy access.

If you have a poor memory or a cognitive limitation:

Keep the telephone number for emergencies (often 9-1-1) or the fire department stored in your telephone.
Prepare your fire safety plan, write it down and keep it where you can find it in an emergency.

Do you have at least two escape routes to easily exit your home and get a safe distance away to a place where you can call the fire department?

Plan to Communicate

It is important to know in advance whom to contact in an emergency situation, and how you are going to contact them. Nearly all areas in Canada are now serviced by 9-1-1 emergency telephone assistance that connects directly with fire, ambulance and police services. However, if you do not have 9-1-1 service, post the emergency telephone numbers for the fire department near the phone.
If you have difficulty dialling the telephone, you may wish to consider purchasing a telephone with memory that allows you to pre-program numbers. Some telephones also have automated voice dialling features that enable you to dial using your voice if the number is programmed into the phone. This is an excellent idea for someone with severely limited use of their arms.
Sometimes in an emergency situation, it is more difficult to communicate quickly and efficiently. People who might have difficulties explaining details of an emergency or have speech impairments may need more time and should consider having a pre-recorded emergency message with their name and address. It is always a good idea to plan ahead. Pre-programmed telephones and portable telephones are helpful, as is a home automation system that automatically calls the fire department if the smoke alarm is activated. See CMHC’s About Your House: Accessible Housing by Design — Home Automation for more information.

If your ability to communicate in an emergency situation is limited in any way, it is advisable to discuss your communication needs with your local fire department and your emergency service provider.

Some telephones feature emergency call buttons. People who are hard of hearing should have telephones with sound amplification in all locations of their homes. People who are deaf or have trouble speaking should have a text telephone, a teletypewriter (TTY) or a text messaging system that will enable them to type their message or send a pre-programmed message to the 9-1-1 centre in the event of an emergency. Contact your local fire department to confirm procedures for TTY calls. Call the administrative number, not the emergency number, to inquire.
People with cognitive impairment may benefit from having a phone that allows photographs to be associated with numbers.
Older people who need emergency communication in the event of a fall or emergency should consider obtaining a personal monitoring system, whereby they can press a button on a wireless pendant or bracelet to summon help. This is especially useful for older people who live alone.
Note that internet-based VoIP phone systems may not incorporate the ability to call 9-1-1. Also check with your mobile phone provider to confirm if you have access to 9-1-1 services.

Plan Your Evacuation Routes

Evacuation is the most common fire safety strategy. It is important to plan your escape routes in advance of an emergency situation. Everyone must leave the home, including people with activity limitations. No single evacuation technique is suitable for everyone: people requiring assistance differ in their needs, capabilities, endurance and tolerance levels. Before there is an emergency, you need to think about your abilities and limitations in terms of your ability to evacuate.
Your evacuation strategy should consider whether you live alone, whether there is help close by, whether you live in a home or apartment, and the degree of independence and mobility you have. The evacuation plan should be developed in cooperation with your local fire department, your building manager (if there is one) and your family members, including people with activity limitations.
Having at least two escape routes ensures that you will always be able to get out of your home safely (see Figure 1). The routes should be located away from each other to ensure that at least one is usable in the event of a fire. One should be the main accessible entrance. The other should be an accessible evacuation route with elements that meet your individual needs, such as handrails or a ramp.

Drawing by: DesignAble Environment Inc.
Figure 1 — Fire evacuation routes

If you have a residential lift in your home, you should check to see if it can be used in an emergency situation. Also check whether it is possible to operate it with backup power in the event of a power failure. See CMHC’s About Your House fact sheet Backup Power for Your Home for more information.
Many municipalities require two evacuation routes from the home. For someone who uses a wheelchair, that might include the accessible garage entrance and an access route to an exterior deck. Some municipalities do not allow someone who uses a wheelchair to have their bedroom in the basement because there is only one evacuation route available. Check your local municipality or provincial building code requirements.

Practise Evacuating

Everyone should practise how they will evacuate their home in an emergency situation. It just makes sense. Make it an annual event as family members grow up, get older, and welcome new members.
Discuss all aspects of your evacuation plan, including a meeting place outside of your home.

Strategies for Evacuating Your Home

If you are a person with an activity limitation and can walk, but cannot evacuate at the same rate as everyone else, your local fire department may advise you to wait until the majority of people have evacuated and then proceed.
If you are not able to evacuate independently, you should consider how you will obtain assistance. Some possible evacuation strategies are outlined below:

The “Buddy System”

The “buddy system” matches an individual with family, friends or neighbours who volunteer to provide assistance in an emergency. Each person should have at least one or two backup “buddies” who will be available in emergency situations.
When there is an emergency situation, it is the responsibility of the person and their buddy to meet at a pre-arranged location. Depending on the nature of the emergency and location of the fire, the fire department or even the buddy may be responsible for assisting in an evacuation.
The “buddy system” is suggested for people with a wide variety of disabilities, as well as seniors and people with agility limitations.

Guiding

Figure 2 — Elbow-guiding technique

If you are elderly or have a slight agility or mobility limitation, or you are blind, you may wish to be guided out of your home or apartment building. If you wish to be guided you should state your preferences to your building manager, buddies or others who may assist you, prior to an emergency situation. Practise this procedure together so that it will be a comfortable and predictable activity in an emergency.
Assistive and support techniques work well for people who have a mobility or agility limitation, and require the arm of someone for stability. Your assistant may prefer to take your arm providing additional balance and support to you. If you have crutches, a cane or walker, be sure that your guide or assistant brings them along when you evacuate.
If you are blind or visually impaired, good communication about how you wish to be guided is advised. The best method is for you to take the arm of the person guiding you, then you can anticipate and be forewarned of what the next move will be based on their change in position and direction (see Figure 2). Good communication includes clear verbal directions warning of steps and obstacles, such as “there is a step up.”

Using a Wheelchair for Stair Evacuation

Figure 3 — Using a wheelchair for a stair evacuation

If you use a wheelchair and prefer to remain in your wheelchair, this may be the easiest evacuation method. However, this option is not practical with a person who uses a power wheelchair or scooter as it is too heavy and awkward.
If you wish to use your wheelchair as an evacuation device, it is extremely important to practise the technique you will use, and to participate in drills with those who will be assisting you.
No one should attempt to carry a person on stairs, even as part of a team, unless they are sure that they can hold the weight of the person and the wheelchair. One person should be positioned at the back of the wheelchair and at least one other person should be at the front of the wheelchair. When tilting the wheelchair back, the person at the back should grasp the handles and tip the wheelchair slightly backwards.
The person who will be guiding and supporting at the front of the wheelchair should grasp the parts that are securely attached to the main frame (see Figure 3). Good communication between the wheelchair user and the assistants will involve discussing which parts of the wheelchair are the safest parts to grasp as many parts of a wheelchair are removable.

Assistive Devices for Evacuation

If you have an agility or mobility limitation but do not use a wheelchair, if you do not feel safe using your wheelchair during an evacuation or you use a power wheelchair or scooter, you may need to consider using an assistive device such as a personal monitoring system or an evacuation device. Some evacuation devices are designed to be used on stairs.
Evacuation devices are particularly useful for high-rise living and in group home environments. See the “Assistive Devices” below.

Transferring and Carrying Techniques

Drawing by: Philip Dion
Figure 4 — Piggyback lift carry technique

Drawing by: Philip Dion
Figure 5 — Cradle lift carry technique

Drawing by: Philip Dion
Figure 6 — Blanket drag evacuation technique

If you are unable to evacuate independently and do not have access to an assistive evacuation device, the person providing assistance may have to carry you. There are several lifts and carries that can be used.
A one-person assist should be used only in an extreme emergency, as a one-person carry may injure a person with a disability or a person such as a senior who may be more fragile; however, in an emergency it may be the only option available.
The piggyback lift (see Figure 4) is frequently preferred, unless the person to be rescued has no arm strength or is very light and another lift can be accomplished more easily.
The cradle lift (see Figure 5) is preferred for small or light persons and while it is often favoured in an emergency evacuation, it can be difficult and risky for the rescuer.
The blanket drag (see Figure 6) is easy to do in apartments and homes that are on one level. It is simple to do and requires only a blanket. The rescuer positions the person on a blanket and pulls the person along the floor surface.

Living in High-Rises

Work With Building Managers

Most provincial or municipal fire codes require that high-rise buildings have fire safety plans. These plans generally require that building managers note any residents with disabilities or activity limitations that might affect them in the event of a fire or emergency situation.
If you live in an apartment building and have an activity limitation that would prevent you from evacuating independently or if you require some assistance, contact your building manager to devise an evacuation plan that is specific to your needs and abilities. After devising your plan, make sure you practise it with building staff and any buddies who may be part of the plan. This will ensure that you are able to have the assistance that you need, when you need it.

Protect in Place

Does your building manager know whether you need assistance and how to provide it during an emergency?

The “Protect in place” strategy specifies that occupants stay in their building during an emergency. They may utilize an area of refuge or a safe holding area, or if their apartment is appropriately fire-rated, they may be directed to stay in their unit. Some fire departments advise residents, both with and without disabilities, to stay in their unit if they live in a high-rise building until they are notified that evacuation should take place. It is always important to discuss this option with the fire department.

Areas of Refuge

Areas of refuge or areas of rescue assistance are fire-rated areas where a person, unable to evacuate independently, can safely wait for assistance. The area of refuge is required by some building codes, which stipulate that it be served by an exit or firefighters’ elevator, marked with the International Symbol of Access (this is the symbol widely used to identify accessible parking spaces), and equipped with a communication system.
Balconies are sometimes considered acceptable areas of refuge.

Elevators

One strategy that should be considered when living in a high-rise apartment building is the use of the safe elevator. While signs are posted advising against the use of the elevator in the event of an emergency, some fire safety plans include using the elevator under the supervision of firefighters.
Firefighter elevators have special features, such as a separate elevator shaft with increased protection from fire, smoke, water and loss of power. This option should be discussed with the building manager in conjunction with the fire department.

Assistive Devices

Technical aids and assistive devices for people with activity limitations are designed to assist people in an emergency and to ensure their evacuation is as quick, safe, and easy as possible.
For people who are deaf or have a hearing impairment, technical aids such as pagers, strobe alarms, pillow shakers, and integrated notification systems ensure they are made aware of fire alarms and evacuation instructions.
For people with mobility impairments, devices such as evacuation chairs and portable ramps are available to assist with evacuations.
For information on some home automation devices that can be used for fire safety, please see CMHC’s About Your House: Accessible Housing by Design — Home Automation fact sheet.

Glossary

Accessible evacuation route: a route that is accessible and easy to use for people with activity limitations. It is flat, stable and has no stairs or steps.
Evacuation plan: a plan for an emergency situation that you have practised to ensure your safety and which has at least two egress routes.
Home automation system: a system that can be used to control certain elements of your home environment including: lighting, mechanical systems, home security, entry systems, appliances, telephones, computer systems and safety systems.
Personal monitoring system: a system which enables a user to notify an emergency monitoring company or emergency contact person of their emergency situation through the use of a one-touch button pendant or wrist band.

The Principles of Universal Design

Universal design is defined as:

“The design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.”

The concept is an evolving design philosophy.

Principle 1: Equitable Use

This principle focuses on providing equitable access for everyone in an integrated and dignified manner. It implies that the design is appealing to everyone and provides an equal level of safety for all users.

Principle 2: Flexibility in Use

This principle implies that the design of the house or product has been developed considering a wide range of individual preferences and abilities throughout the life cycle of the occupants.

Principle 3: Simple and Intuitive

The layout and design of the home and devices should be easy to understand, regardless of the user’s experience or cognitive ability. This principle requires that design elements be simple and work intuitively.

Principle 4: Perceptible Information

The provision of information using a combination of different modes, whether using visual, audible or tactile methods, will ensure that everyone is able to use the elements of the home safely and effectively. Principle 4 encourages the provision of information through all of our senses — sight, hearing and touch — when interacting with our home environment.

Principle 5: Tolerance for Error

This principle incorporates a tolerance for error, minimizing the potential for unintended results. This implies design considerations that include fail-safe features and gives thought to how all users may use the space or product safely.

Principle 6: Low Physical Effort

This principle deals with limiting the strength, stamina and dexterity required to access spaces or use controls and products.

Principle 7: Size and Space for Approach and Use

This principle focuses on the amount of room needed to access space, equipment and controls. This includes designing for the appropriate size and space so that all family members and visitors can safely reach, see and operate all elements of the home.

Additional Resources

Betty Dion Enterprises Ltd. (2004). Fire Safety for People with Disabilities — A Public Educator’s Guide. Ottawa, ON, Canada: Canadian Paraplegic Association.
Province of Ontario. (2007). Emergency Preparedness Guide for People with Disabilities/Special Needs. ON, Canada: Queen’s Printer for Ontario.
Richardson, K. (n. d.). Fire Safety in High-Rise Apartment Buildings. Ottawa, ON, Canada: Ontario Association of Architects and CMHC.

Last revised: 2010.

Related CMHC Information

“Accessible Housing by Design” Series

Related Links

Fire Marshal’s Public Fire Safety Council
National Fire Protection Association — enter “People with disabilities” in the search box.
Office of the Fire Marshal of Ontario — Provincial/State Level Fire Regulatory Organizations
U.S. Fire Administration — Fire Safety for People with Disabilities

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tips 4 oldies...

Easy on the Hands. You probably don't think much about turning a doorknob, but it can actually be quite a chore, even painful, for someone with arthritis or other conditions. Simply replacing doorknobs with lever-style hardware can make life easier for residents. Levers are also best on faucets, and illuminated rocker switches are better than the standard toggle light switches.

Friendly Floors. Slippery surfaces are not the only danger underfoot, although they're the most obvious. All floors should be made slip-resistant, such as by adding nonskid mats under area rugs (or getting rid of the area rugs completely). Trips are as dangerous as slips, so eliminate trip points like thresholds wherever possible, or reduce their height. For those who use walkers, adds Cratsley, low-pile carpeting is safest so the walker doesn't catch on deep pile and cause a fall.

Safe Stairs. For older people living on more than one level, stairs can be especially dangerous. Handrails are a must, on both sides of the staircase if possible. Lighting is also critical, says Cratsley, so make sure the entire stairway is well lit from top to bottom. Clearly defined steps that show where the edge of the tread is can help prevent falls.

A Well-Lighted Place. The staircase isn't the only part of a home that needs good lighting. A dark room is an invitation to a bump or a fall, so make sure there's adequate lighting in every room, hallway, and doorway. Entryways are especially dangerous if not well lit.

Landing Places. Fumbling with keys, packages, the mail — all can distract and unbalance someone entering or exiting a home. In addition to providing lighting at entryways be sure to have a table, bench, or other surface nearby for putting things down.

Better Baths. Most people think of shower grab bars as the way to make bathing safer. There are other ways to help ensure safety in the bath, says Cratsley. Think about adding grab bars by the toilet, too, or other places in the room where someone may need a helping hand. A step-in shower is safer than a tub, but if that's not possible add grab bars that help someone getting in and out. A single-handled faucet control reduces the chances of scalding at the sink, and a pressure-balanced control does the same in the shower. A hand-held showerhead is often easier to use for someone with limited mobility than a fixed showerhead

USA DEFINING DESABILITY-

Ensuring Access for People with Disabilities

Chapter 26 Sections

· Section 2. Improving the Quality of Housing

· Section 3. Providing Affordable Housing for All

· Section 4. Ensuring Access for People with Disabilities

· Section 6. Improving Parks and Other Community Facilities

· Section 7. Encouraging Historic Preservation

· Section 8. Creating Good Places for Interaction

· Section 9. Protecting Environmental Quality

· Section 12. Promoting Neighborhood Action

· Section 13. Neighborhood Design and Zoning for Community Buildings

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· Main Section

· Checklist

· Tools

· PowerPoint

· What do we mean by ensuring access for people with disabilities?

· Why ensure access for people with disabilities?

· When should you ensure access for people with disabilities?

· Who should ensure access for people with disabilities?

· How do you ensure access for people with disabilities?

· How do you engage in disability advocacy?

Getting around in the physical world is something many of us may take for granted. Curbs, thresholds, stairs, sidewalk gratings, obstructions, narrow passages – these are barriers we walk over, around, or through many times a day. We may seldom think about signs, loudspeaker announcements, traffic signals, and other sources that direct us or give us necessary information, except to avoid or use them.

For those of us who have some physical difficulties, however – a curb or a few stairs can be large barriers. Airport loudspeaker announcements are often difficult to understand for people with perfect hearing; for those who are deaf or hard of hearing, they might as well not exist. Signs, no matter how well-placed they are and how much information they carry, do someone who is vision impaired no good unless they are in predictable places and can be read by touch.

In other words, physical features that people without physical disabilities take for granted can present serious problems for people with different abilities, mostly because their needs haven’t been considered in designing those features. That lack of consideration can also be extended to the ways people with disabilities can be treated when they seek employment, education, or services. In over 50 countries, this situation has been recognized and addressed, at least to some extent, by laws that protect people with disabilities from discrimination, and guarantee them at least some degree of access to public facilities, employment, services, education, and/or amenities.

This section is part of a chapter that deals with changing the physical and social character of communities. We will discuss making community changes that ensure that people with disabilities have physical access to buildings and other spaces that are used by the public, as well as changes to ensure their access to employment, services, education, the functions of government, and full civic participation.

What do we mean by ensuring access for people with disabilities?

According to the Americans With Disabilities Act (ADA), “the term ‘disability’ means an individual has a physical or mental impairment that substantially limits one or more of his/her major life activities or there is a record of such an impairment or an individual is regarded as having such an impairment.” Caused by injury, disease or medical condition, or neurological, chemical, or developmental factors, severe disabilities affect about 12% of the U.S. population.

About 18% of the population has some level of disability, a figure that expands to 72% for those 80 and older, and shrinks to 11% for children ages 6 to 14. Four percent of the population over age 6 is severely enough disabled to need personal assistance with one or more activities of daily living.

Passed in 1990, ADA is the comprehensive law that covers most issues of accessibility for people with disabilities in the U.S., and disability rights laws in many other countries are based on it. It applies to all state and local government offices and facilities (federal facilities have been covered by federal law since 1978) and all public facilities – buildings and other spaces that are available to the general public. ADA guarantees both physical accessibility and non-discrimination in employment and the delivery of goods, services, programs, and education. We’ll discuss some of the specifics of this and other disability rights laws and their application in more detail later in this section.

A disability is only actually a disability when it prevents someone from doing what they want or need to do. A lawyer can be just as effective in a wheelchair as not, as long as she has access to the courtroom and the legal library, as well as to whatever other places and material or equipment that are necessary for her to do her job well. A person who can’t hear can be a master carpenter or the head of a chemistry lab, if he can communicate with clients and assistants. A person with mental illness can nonetheless be a brilliant scholar or theorist. (John Nash, the subject of the movie “A Beautiful Mind,” is a Nobel Prize winner described by some as the most important mathematician of the second half of the 20th Century, despite being schizophrenic.)

Sometimes, on the other hand, a disability is really a disability. If the building is on fire and the elevators aren’t working, a wheelchair user on the 14th floor could be in quite a predicament. In order to function effectively and safely in jobs, education, and everyday life, people with disabilities have to have physical and social access to the same spaces, employment, goods, services, entertainment, and community participation that everyone else does. When that’s the case, their disabilities don’t limit their ability to fully participate in life.

Disabilities can be visible or invisible, physical or otherwise. Most can result either from hereditary conditions or pre-birth developmental issues; from injury; from disease; from chemical imbalances; or, in some cases, from environmental factors.

Types of disabilities

Physical

These are what most people think about when they hear the term “disability.” They are usually visible in one way or another, and can include:

· Mobility problems. Because folks who have difficulty with mobility may be stopped by barriers most people don’t notice – a high curb, a flight of stairs – people with mobility problems are the ones who may come to mind when access is mentioned.

· Use of hands and arms. Difficulty using hands or arms may or may not accompany mobility difficulties. People with this disability can find themselves frustrated in a world where gripping, turning, or pushing something with a finger is often a means of access.

Again, it’s only a disability when it gets in the way. Jim Abbott, who was born without a right hand, had a respectable ten-year pitching career in major league baseball, after starring for his high school baseball and football teams and playing college baseball. By definition, he has a disability: in reality, he has nothing of the kind.

· Speech difficulties. Posing challenges to communication, they make phone conversation difficult or impossible, and often lead to frustrating exchanges in restaurants, doctors’ offices, and stores. They can bring with them the sometimes mistaken assumption that someone who doesn’t speak clearly has either a cognitive disability a mental illness. Causes of speech difficulties include neurological conditions such as Parkinson’s disease or cerebral palsy, throat-cancer surgery, autism, and mental retardation.

In addition to these conditions, there are a number of “invisible” physical disabilities; conditions that aren’t immediately apparent, or that aren’t constantly present, but that can cause considerable difficulty. As a result, they may be considered disabilities under the law, and are subject to the same regulations as more obvious issues, even if they’re controlled by medication. Some examples include:

· Back or joint problems. Backs, knees, and hips, because of injury, arthritis, or aging, may be fine one day and non-functional the next (or the next minute, as a result of a wrong move). Tripping on a cracked sidewalk or sitting for six hours on a plane might render someone unable to walk.

· Chronic pain. Nerve damage from injury, disease, or repetitive motion may cause intensive and chronic pain.

Sensory limitations

· Hearing difficulties or deafness. Some people are born totally or partially deaf. Many others develop hearing problems as the result of exposure to loud noise, injury, disease or infection, or aging.

· Vision difficulties or blindness. Like deafness, blindness may date from birth, or may be a result of injury or a medical condition. Some people who appear to be sighted are in fact legally blind, but can see enough to avoid common obstacles and other people. People who are totally or nearly blind may use a cane or guide dog to help them get around, or may simply rely on their other senses, common sense, and the help of others.

For a person depending on a service animal, such as a “seeing eye” dog, access means access for the animal as well. The ADA requires businesses and other public facilities to allow service animals to accompany people with disabilities on their premises, and forbids excluding people with service animals or isolating them from other customers. The law includes restaurants, which may be prevented by local or state health regulations from allowing animals. Federal law, however, overrides the others.

Most public facilities recognize guide dogs for the blind, but may be confused by hearing dogs (deaf people may not appear to have a disability), or by other species used as service animals. Miniature horses and some breeds of pigs have become more popular as guide animals, for instance, and monkeys sometimes serve as personal care attendants for people who are quadriplegic. All are covered under the law, and even allowed, in most cases, to ride with their handlers on planes.

Neurological

Neurological means having to do with the nervous system. Many physical disabilities are in fact neurological in origin – migraines and cerebral palsy, for instance, spring from problems in the brain, rather than from mechanical problems in muscles, organs, or bones. Among them:

· Migraines. Long thought to be psychological, migraine disease is actually a neurological syndrome, the major symptom of which is usually incredibly painful and debilitating headaches, often accompanied by vision disturbances, weakness, and/or nausea. Apparently genetic in origin, migraine headaches can be triggered by weather, hormonal cycles, and/or various environmental factors, such as lighting and odors (the triggers are different for different individuals). The headaches and accompanying symptoms can last for hours or days, and can make work, travel, and other activities nearly impossible

· Epilepsy and other seizure disorders. People with epilepsy may function normally most of the time, but occasionally may have seizures (technically called convulsions) – episodes in which there are essentially power surges in the electrical impulses in the brain. The result may be as drastic as loss of consciousness and/or motor control, or as minor as an involuntary twitch. Most people with epilepsy and other similar disorders take anti-seizure medication, but many experience noticeable side effects, such as sleepiness.

· Tourette syndrome. A neurological condition characterized by uncontrollable tics (twitches) of both body and voice, Tourette is famous because many people’s vocal tics include obscenities. Effects vary from person to person, but are almost always embarrassing and psychologically painful for those who have them, and can create problems at work and in social situations.

Cognitive limitations (including some developmental disabilities)

These disabilities are the result of genetic factors and development, often before birth. They tend to span a range of intellectual and other abilities, so that some people may be able to live independently and work, while others may need lifelong support. Although aspects of these disabilities may be treatable to some extent by behavioral and/or drug therapy, they are permanent conditions.

· Autism. Long thought to be a psychological issue, autism has only recently come to be recognized as lifelong, stemming from conditions in the brain, and perhaps other parts of the body as well. Symptoms generally develop very early in life (by about age 3), and involve a difficulty in processing information that leads to lack of interest in interacting with others (as well as blindness to social cues and norms) and with the environment. Autistic children and adults may engage in repetitive behavior. Some never learn to speak or interact, while others may, with behavioral therapy and other supports, eventually be able to function very well in their day-to-day lives.

· Asperger’s syndrome. Asperger’s syndrome, like autism, is classified as a pervasive developmental disorder. People with autism and Asperger’s syndrome share a difficulty understanding social cues and interaction and typically have a preference for sameness and routine. In many other ways, however – speech, intellectual development, interaction with the world – individuals with Asperger’s can be typically developing. Some people with Asperger’s may go through life without realizing they have the disorder, although they can experience difficulty in human relationships.

· Other intellectual limitations. Genetic defects (e.g., Down syndrome), lack of proper brain development, environmental poisoning (from lead paint, for instance), or brain injury can lead to difficulties in taking in and understanding information, acquiring speech, and other reasoning-based activities. Some individuals with such impairments may be able to learn to read and calculate, hold a job, and live on their own. Others with more profound disabilities may need lifelong support, and may never develop past the intellectual capacity of a young child.

Psychiatric limitations

Many, if not most, of our psychological and emotional states and reactions seem to be the result of brain chemistry. Mental illness is much like physical illness in that it can be influenced by environmental factors and events, and is often treatable with drugs. In addition, there are environmental factors that are so powerful – childhood abuse, severe physical injury, terrifying events, war, etc. – that they can have lifelong psychological effects, which may or may not be the result of altered chemistry caused by exposure to them.

There are periods in almost everyone’s life and personal development that present challenges that can result in acting out, or in temporary states of depression, confusion, or anxiety, all of which may look similar to the symptoms of long-term psychological disabilities.They aren’t actual disabilities, however, because, in most cases, they resolve themselves relatively quickly through the natural course of living, and although they may cause emotional pain at the time, most people can continue to function as they cope. True psychological disabilities can include:

· Schizophrenia. A condition once thought to be caused by bad parenting, since it often becomes apparent in adolescence, schizophrenia is usually characterized by an altered reality. Hearing voices is a classic symptom, but the range can include other hallucinations, both visual and auditory; delusions (of persecution, omnipotence, etc.); and dissociation (inability to make logical connections and to respond to reality). Schizophrenia can often be controlled to some extent by medication.

· Bipolar disorder. Widely known as manic depression, bipolar disorder causes swings between depression and an overly optimistic and agitated state. In some people, these mood swings are barely detectable, but in others they can be extreme. The manic state can bring feelings of great power and competence. Many people with bipolar disorder can be treated successfully with medication.

· Chronic depression. Almost everyone gets at least mildly depressed occasionally, either because of a life event, or for no apparent reason. Those who are chronically depressed may struggle every day to get out of bed or perform the simplest tasks. Bouts of depression can last for months or years, rendering people incapable of working or participating in family and civic life. Relationships may suffer, adding to the burden. Many people with depression are treated with medication.

Multiple chemical sensitivity limitations

Alcoholism is classed as a disability – presumably because alcohol is legal – while illegal drug dependence is not. “The illegal use of drugs includes the use, possession, or distribution of drugs that are unlawful under the Controlled Substances Act. It includes the use of illegal drugs and the illegal use of prescription drugs that are ‘controlled substances.’” (A 1992 definition by EEOC, the Equal Employment Opportunity Commission). The ADA prevents job discrimination against alcoholics and rehabilitated or former drug users. It does not, however, prevent employers from firing workers who use alcohol or drugs on the job, from firing workers whose addiction renders them incapable of performing to the standards of the job (assuming that other workers are held to the same standards and would be fired for the same reasons), or from not hiring workers who are illegal users of drugs.

Learning limitations (including some developmental disabilities).

· Dyslexia and other learning disabilities. Dyslexia is actually a term that refers to a broad range of neurologically-based learning difficulties, all of which affect an individual’s ability to read and/or calculate. In addition, there are several other types of learning disabilities, some affecting only a particular area – language learning, for instance – and some affecting learning in broader ways. These are not connected to intelligence: dyslexics, in fact, tend to be somewhat above average in IQ, and many learn to read well in spite of their disability. Others – often those not diagnosed in childhood, or those with other problems unrelated to their disability – may continue to struggle.

Access for people with disabilities

Physical access

This means access to buildings, public spaces, and any other place a person might need to go for work, play, education, business, services, etc. Physical access includes things like accessible routes, curb ramps, parking and passenger loading zones, elevators, signage, entrances, and restroom accommodations. For more details: ADA Standards for Accessible Design.

The Centro Ann Sullivan del Peru provides services to children with different abilities, but lacked the technical skills and information to become entirely accessible. With the consultation and help of a colleague, Dr. Glen White, they were able to make the needed modifications and become completely accessible, thereby better serving their children.

Now, Dr. White is working with international colleagues to make San Isidro (a municipality of Lima, Peru) entirely accessible. Architect Sr. Jaime Heurta, a person with paraplegia, and also an architect, has been a key player in this movement in San Isidro. Independent Living leaders in the United States are working with colleagues in Peru to set up the first Independent Living Center in Peru, with the ultimate goal of making Peru more accessible to people with different abilities.

Access to communication and information

Signs, public address systems, the Internet, telephones, and many other communication media are oriented toward people who can hear, see and use their hands easily. Making these media accessible to people with disabilities can take some creativity and ingenuity.

Program accessibility

People with disabilities have, in the past, often been denied access to services of various kinds – from such human services as child care or mental health counseling to help in retail stores to entertainment – either because of lack of physical accessibility or because of their disabilities.

Employment

Discrimination in hiring on the basis of disability – as long as the disability doesn’t interfere with a candidate’s ability to perform the tasks of the job in question – is illegal in the U.S. and many other countries, and unfair everywhere.

Education

Everyone has a right to an education appropriate to her talents and needs. The Individuals with Disabilities Education Act (IDEA) in the U.S., as well as laws in many other countries, guarantee education to students with disabilities. In the case of IDEA, that guarantee extends through high school, while ADA covers undergraduate and graduate students admitted (without discrimination) to colleges and universities.

Community access

Everyone should have the right to fully participate in community life, including attending religious services, dining in public restaurants, shopping, enjoying community park facilities, and the like. Even where there are no physical barriers, people with disabilities still sometimes experience differential treatment.

In general, ADA requires that public and government facilities, cities and towns, educational institutions, employers, and service providers make reasonable accommodations where necessary to serve people with disabilities. “Reasonable accommodation” means making changes that don’t cause unreasonable hardship to the party making them or to others that party deals with (students, customers, employees, program participants, etc.).

Why ensure access for people with disabilities?

· In many countries, it’s the law. Fifty-five countries (see Tool #1) have either passed specific laws concerning the rights of people with disabilities, or have enshrined those rights in their constitutions.

· It’s a matter of fairness and respect. People with disabilities have the same rights as others, including the right to fully participate in community life. Everybody has a right to live as normal a life as possible.

· Failing to do so wastes talent and energy. Many people with disabilities in all walks of life are competent at important jobs, and some do remarkable work. Denying people access to employment, education, or services wastes human resources and makes society poorer.

· It makes good business and economic sense. For commercial operations of any kind, accessibility means that people with disabilities can become customers, increasing sales volume and profits. Furthermore, if a firm is a good place for customers with disabilities to do business, the word will get around.

· Many people with disabilities already have a difficult life. It’s simple human decency not to make it any harder than necessary.

· People with disabilities add to the diversity of the community, and that diversity makes everyone’s life richer. If they can mix normally with the rest of the community, they will have more friends and acquaintances, and more people will have the opportunity to know them.

· Access for people with disabilities improves access for everyone. Making public spaces and facilities physically accessible for people with disabilities also makes them more accessible for people who may not have disabilities, including families with baby strollers, skateboarders, and bicycle riders. Making ramps a built-in feature of the environment is good for everyone.

“Baltimore seats,” which came about after a lawsuit for the Paralyzed Veterans of America, are now often included in newly constructed major league baseball stadiums. This type of seating allows for a stadium seat to fold out of the way for wheelchair access when needed. According to the ADA, there should be enough accessible seating to accommodate at least 1% of the capacity of the stadium (so, for example, this would be at least 1,000 accessible seats in a stadium that seats 100,00).

When do you ensure access for people with disabilities?

· When new public facilities are being designed and/or built. Any new building used as a public facility (e.g., parks, sports stadiums, other public facilities) must be accessible. Minimally, the design should be functional to accommodate people with different abilities, but good design can make accessibility total and essentially invisible.

· When there’s an addition, renovation, or repair made to a public facility. This is the time to make sure that accessibility means total accessibility. Even buildings and other facilities that fulfill all the requirements of ADA aren’t always totally usable for people with disabilities. It’s important that designers, builders, and people with disabilities themselves think about how best to provide access. If over 25% of a building is being remodeled, ADA requires to make the entire building accessible. In addition, some states have a tax incentive for owners who bring their buildings into compliance with ADA.

· When a historic building is rehabilitated for a public use. This is an easy sell, since not only is it the law to make such a project accessible, but the developer can get back a good bit of the money spent on accessibility improvements through tax credits. Additionally, construction and modifications can be made so that they do not look obvious in order to help maintain the historical look of the façade.

· When a community group is working on improving or rehabilitating a public facility or space. A grassroots group may be trying to bring back a neighborhood park, or restore an abandoned warehouse as a community center. Especially if the project is being accomplished largely with volunteer labor, it’s important that they think about accessibility. The old entrances to a neighborhood park may have several steps up from the street, for instance: accessible entrances need to be designed that don’t take away from the traditional look and feel of the park, and still make it easy for people with disabilities to enjoy the space.

Don’t forget to solicit help from people with disabilities to help with these projects. Get their stakeholdership by getting them to participate in these projects. They are their public spaces, too.

· When an organization, institution, or agency that provides services or education is moving or renovating its facility. A move can be one to a more accessible location and building. A renovation can include accessibility accommodations.

· When there are complaints about lack of access. For non-federally funded buildings, there are not usually ADA inspections. Often, someone must file a complaint in order for ADA to be enforced. If you’re connected to an organization that’s getting complaints because it’s not fully accessible, it’s to your advantage to do something about those complaints before someone calls the Department of Justice. If you’re an advocate or a concerned party – or a person with disabilities – who knows about the problem, you can save everyone a huge amount of trouble by suggesting or brokering reasonable accommodations.

Who should ensure access for people with disabilities?

· People with disabilities themselves. People with disabilities have often been incredible self-advocates.They can demonstrate how lack of accessibility affects them, and speak eloquently about their experiences. As participants in planning the design and construction of new buildings and facilities, they can bring their experiences to bear to make projects as accessible and usable as possible.

· Organizations concerned with disability rights. Besides the fact that ensuring access is one of the reasons these organizations exist, the folks who staff them – often themselves people with disabilities – know both the political and the architectural territory, as well as the laws concerning accessibility.

Centers for Independent Living (CILs) work with many community organizations to make them more accessible. They also teach people with disabilities how to do personal and systems advocacy. See a directory of CILs in your area.

· Legislators and other public officials. Legislators and other public officials can craft laws and policies that ensure not only access for people with disabilities, but raise consciousness about their issues. There is good political sense involved here as well, since people with disabilities not only contribute to the community, but also vote.

· Enforcing agencies. The Department of Justice (DOJ) and other agencies concerned with enforcing all or part of ADA can do more than simply respond to complaints. DOJ, for instance, conducted a survey of state and local governments to determine whether they were in compliance with the law, and then worked with those that were not to draft agreements about how they were going to reach compliance.

· Employers. It makes sense for employers to make sure they can hire the best person available. Making their workplaces accessible allows them to do just that, without having to think about accommodation if that person happens to have a disability.

· Educators. Educators, by and large, care about learners, and want them to do well. Accessibility is not only the law, but it vastly increases the chances that learners with disabilities of all kinds will be successful.

· Organizations that provide public services. These organizations are obliged to be accessible, but they also often act as advocates for participants. Moreover, being as accessible as possible reflects the value that many of them put on diversity, equity, human rights, and fairness.

· The court system, when necessary. When an individual or enforcement agency can’t come to a satisfactory agreement about accommodation, a court may have to settle the dispute according to the law.

· Architects and planners. Architects and planners can incorporate accessibility into all their designs if they’re aware of the issue and attentive to the needs of people with disabilities.

· Developers. It’s to the advantage of a developer to consider accessibility for a number of reasons. First, it makes economic sense to build it in to begin with, since it’s likely to be less expensive than trying to make over a building or facility later. Second, it increases the value of the project, as well as increasing the number of people who’ll be able to use it as residents, customers, or however the project is intended. And finally, the developer can get a tax credit for part of the expense associated with creating accessibility.

How do you ensure access for people with disabilities?

There are a number of aspects to assuring access for people with disabilities. The obvious one is the physical: designing and building or changing structures and spaces to conform to the needs of all members of the community, including those with disabilities. In addition, however, there are social aspects, such as non-discrimination in employment and service delivery, and equal treatment in all situations of people with and without disabilities. And finally, there are political considerations: working to strengthen and enforce the laws that do exist, and working for laws to protect people with disabilities in countries that don’t have them. Perhaps most important is raising the consciousness of those who design and/or build facilities, employers, and the community and society about the rights and needs of people with disabilities.

When most of us think about a building, a park, or even a sidewalk, we sometimes don’t think about people at all. When we do, we often consider only able-bodied adults, leaving out children, elders, and people of all ages with disabilities. Ensuring access for those with disabilities involves changing attitudes. ADA has started the process simply by mandating access, so that now, after 15 years, everyone in the U.S. is used to seeing ramps, handicapped bathrooms, etc. After a certain amount of time, accessible buildings and spaces become just the way things are built, and no longer an issue.

But that’s only physical access. What about access to job, services, and programs? What about being treated with respect and helped in whatever ways necessary in retail stores, restaurants, and theaters? All of that involves changing attitudes as well. The more people with disabilities are able to access physical facilities, the more they will be part of the general population. Rather than generating embarrassment, discomfort, or even fear, they’ll be seen more and more in the same way as anyone else – as individuals, with unique personalities, strengths, and problems. And that is, after all, the goal: for people with disabilities to be able to live their lives just as everyone else does, struggling with challenges, enjoying the high points, and not having to worry about the simple things like getting up a flight of stairs.

That said, how do you ensure various kinds of access? We’ll examine the different aspects of access one at a time.

Much of the material that follows in this and the last part of the section is based on ADA, because that law is the most comprehensive – it covers most areas of concern to people with disabilities, and attempts to set out clear and specific standards for access.

Physical access

As explained above, this means access to any indoor or outdoor spaces a person needs to use. Under ADA, it is expected that the government body, the owner or tenant of the space, the service provider, the employer, or the school must make a “reasonable accommodation” to enable access for people with disabilities. A reasonable accommodation is an adjustment to whatever barrier prevents access that doesn’t impose an undue hardship on the individual, business, organization, or institution providing the accommodation, or on its other users or participants. Thus, a grassroots human service program isn’t expected to install an elevator, since the cost would be out of the organization’s reach. It would be expected, however, to try to find some other way to deliver services to a participant who uses a wheelchair (equivalent to those services offered to others).

By the same token, a large corporation might be expected to make over a building, or many buildings (a chain of retail stores, for example), in order to come into compliance with the law, because for such a large business, the expense would be reasonable.

The U.S. government tries to make accommodation (as well as access in new construction or rehabilitation) easier by offering tax incentives for money spent on equipment, materials, and labor leading to increased access for people with disabilities.

The tax credit is available to businesses that have total revenues of $1,000,000 or less in the previous tax year or 30 or fewer full-time employees. This credit can cover 50% of the eligible access expenditures in a year up to $10,250 (maximum credit of $5,000). The tax credit can be used to offset the cost of undertaking barrier removal and alterations to improve accessibility; providing accessible formats such as Braille, large print and audio tape; making available a sign language interpreter or a reader for customers or employees, and for purchasing certain adaptive equipment. The tax deduction is available to all businesses with a maximum deduction of $15,000 per year. The tax deduction can be claimed for expenses incurred in barrier removal and alterations. (From the pamphlet “ADA Guide for Small Businesses”).

In addition to accommodations made in existing facilities, new buildings – with some exceptions, such as private residences – are expected to have accessibility designed into them, as are renovations of public facilities, or rehabilitations of industrial, historic, or derelict buildings that are to be used as public facilities. Some architects in the U.S. have become specialists in designing for access, coming up with creative solutions for difficult problems posed by old structures, for instance.

Outdoor spaces also need to be designed for accessibility. The Project for Public Spaces uses accessibility for people with disabilities as one of its criteria for recognizing a great public space. Accessibility means more than simply being able to get there in a wheelchair. It implies having features and amenities that are usable by everyone, and being emotionally and socially accessible.

A nature trail in a park can be set up so that it can not only be traversed by someone in a wheelchair, but so that it can be walked – and the informational signs along it read – by a blind person, for instance. Furthermore, it needn’t be singled out and labeled a “handicapped” trail, so that it’s only used by people with disabilities. If it’s just a “nature trail,” people of all sorts will use it, and the people with disabilities among them won’t be singled out and labeled, either.

A sensory garden can also be created with flowers and herbs to delight the senses (such as the interesting texture of Lamb’s ear and the fragrant leaves of mint and lavender). Plants can be in raised beds, making a hands-on experience easy for pedestrians and wheelchair users.

Spaces that need to be physically accessible include:

Public facilities.

These are buildings or spaces generally used by the public. They can include restaurants, retail stores, hotels, conference centers, medical and other offices, theaters, sports stadiums, educational facilities, historic sites and other tourist attractions, etc. Access here includes not only access to the buildings, but also to the specific rooms or halls where events take place or where the public must go to conduct business or receive services.

An important feature of accessibility that may be ignored or forgotten is a plan for dealing with emergencies. There should be an escape plan for people with disabilities in case of a power failure, or in case the accessible entrances are blocked by fire or rubble. In an actual emergency, adrenalin often takes over and people do whatever seems necessary. Several people with mobility impairments were carried down many flights of stairs to safety in the World Trade Center disaster on Sept. 11, 2001. In that case, that was probably about as good an escape plan as could have been devised, but it was strengthened by the fact that, after the less-drastic 1993 World Trade Center bombing, specially designed evacuation chairs were installed in the building for just such an emergency. One man who is paraplegic stated that he doubted that he would have gotten out in time had it not been for the chair and the people who took him down in it.

Federal, state, and local government facilities.

Although federal facilities are covered under a different law than those of other branches, all must be accessible to people with disabilities so that they can transact government business and participate to the full extent in civic life.

That includes voting. Polling places have to be accessible, and accommodations have to be made for people who are unable to fill out their own ballots because of blindness or inability to manipulate voting machines or paper ballots. Voters with appropriate disabilities can bring another person into the voting booth with them to fill out the ballot for them, although it’s illegal for that person to influence their choices.

Outdoor spaces, such as public parks, monuments, squares, gardens, etc.

It may seem that these kinds of spaces would always be accessible, but, in fact, they often are not. Parks may have stairs or other obstructions in paths, or be set above sidewalk level. Other spaces may have obstructions as well, and may be surrounded by streets that are difficult to cross, even for people without disabilities. Paths and sidewalks may be too narrow to allow easy wheelchair passage, and badly maintained or designed paved or gravel paths may make walking difficult for anyone unsteady on his feet or with vision difficulties.

Public ways.

Paths, streets and sidewalks, pedestrian passages. Accessibility here may involve curb cuts or ramps, traffic signals that can be both heard and seen, numerous crosswalks, signs, etc.

Public transportation.

People with disabilities are entitled to physical access to public transportation. This is sometimes provided by lifts for buses, trains, and trolleys which require climbing steps to enter. In general, subways, trains, and planes, at least at most U.S. facilities, are entered on the level, and elevators and or ramps are available to take people to platforms and gates.

Physical access, according to the ADA, encompasses a large number of very specific design features. The width of hallways (to the inch or centimeter), the size of elevators (and the positioning of elevator buttons), the height of drinking fountains, the size and position of grab bars in an accessible restroom, the shape of door handles, the width and number of handicapped parking spaces, the slope of wheelchair ramps – all these and many more are explained in detail in the ADA manual, “ADA Standards for Accessible Design,” part of the larger ADA website. Additionally, the U.S. Access Board is responsible for developing and regulating the Americans With Disabilities Act Accessibility Guidelines (ADAAG) code.

Access to communication and information

Some types of disabilities have no effect on access to communication or information, but others do – some in ways most people without disabilities might not think of.

· Signs, posters, and other similar features. We expect printed signs in buildings or on streets to tell us what we need to know, but for people who are blind or near-blind, they may not be helpful. Signs with raised letters or Braille, placed at heights that can be easily reached (specified in the ADA Design Standards), can provide an alternative.

· Announcements. In public places where announcements may be important, and may target individuals – airports, for example – they should be both verbal and visual, so that they can be heard or seen by those with vision and hearing difficulties.

The advent of cell phones that can announce calls with vibration, and that have text-messaging capability, has undoubtedly made life easier for many people with hearing impairments.

· ASL interpretation. Deaf individuals may need an American Sign Language interpreter for meetings with doctors, lawyers, and other professionals; for lectures and classes; for business transactions; or for public gatherings, such as conferences, performances, or public hearings.

· Readers. People with learning disabilities or vision difficulties may need readers in order to successfully complete courses. By the same token, deaf individuals may need to be provided with lecture notes, or to have an interpreter in lectures.

· Internet. According to Section 508 of the Rehabilitation Act, the U.S. government is required by law to make its websites (including those of any organizations or institutions that are federally funded) accessible to the extent possible, and many agencies, organizations and businesses not required to are nonetheless concerned with doing so as well. Accessibility includes monitoring content to make it is easily understood by software and hardware devices that make it possible for people with visual or hearing difficulties, or for those who can’t use a mouse or keyboard, to have full access to the content of a website. The relevant part of Section 508 is given on a Department of Commerce website, along with information on each of the 16 regulations for Internet access.

Devices used by people with disabilities to access the Web include screen readers, which translate on-screen text into speech, and voice-command software that translates spoken commands into mouse clicks and keyboard strokes.

The relevant part of Section 508 is given on a Department of Commerce website, along with information on each of the 16 regulations for Internet access.

· Television. Since 1993, all TV sets sold in the U.S. are required to be equipped with closed-captioning receivers that can be turned on through an on-screen menu or a remote. When turned on, closed captioning displays a text version of what’s being said (as well as relevant non-speech sounds) on the screen, enabling deaf or hearing impaired viewers to experience the any show with captions. Captions can also be helpful to people with some learning disabilities and to literacy learners.

· Concerts and theater performances. Many venues that house performances, lectures, or public forums offer sound amplifying headphones to those who need them.

Access to services

People with disabilities cannot be denied access to services because of their disabilities, or because the services aren’t physically accessible. If the services can’t be made physically accessible, there has to be an alternative provided that’s equivalent to the basic service.

This issue often arises for human service organizations, but may also be a factor for community institutions such as libraries, and for such businesses as hairdressers and insurance agencies. In cases where accessibility isn’t economically feasible, services can be provided in an accessible part of the building, for instance, or brought to the person in his home. Rules, such as those referred to earlier that affect service animals, can be changed or disregarded to enable people with disabilities to take advantage of the service.

Other kinds of accommodations can be made as well. Sales staff can provide help they wouldn’t normally provide to other customers – getting items off shelves or counters, or helping people try on clothes, for instance. Programs can hire sign language interpreters to assist deaf participants, or have some or all of their staff members trained in ASL (or the sign language of their country, if it’s not the U.S. or English-speaking Canada).

ASL, or American Sign Language, is the first language of perhaps a majority of the deaf community in the U.S. Although it is spoken with hand gestures and facial movements and expressions, it is a distinct language, with its own grammar and nuances, as different from English as Japanese, with whose grammar it has some things in common. It shares some vocabulary with French sign language, because the first teacher of sign in the U.S. was French.

Sign languages have developed as spoken languages do, and each country or isolated area generates its own. Interpreters – hearing people who are fluent in sign – provide a linguistic bridge between the signing and speaking worlds, just as language interpreters provide the connection between hearing people who speak different languages.

In some cases, the best and most reasonable accommodation may be to make a programmatic change change or rearrange the space (relocate, build a ramp, widen aisles, have the first-floor offices and the second-floor support group program switch places) or to change the way services are delivered for everyone (e.g., distribute more printed matter, as well as giving information verbally).

In addition to being physically accessible, services must be non-discriminatory. Anyone who’s eligible for services in the same way as other participants (by income, for instance) can’t be denied service except for reasons for which anyone else would be denied service. Some of those reasons might include active drug use, abusive behavior, or inappropriateness for the service offered.

A final note: accessibility should also include sensitivity to the concerns of people with disabilities on the part of both the organization as a whole and the people who work in it. It is important to see every participant as a unique individual, regardless of her physical or mental condition.

Employment

Under the ADA, it is illegal to discriminate against hiring anyone on the basis of a disability unless that disability interferes with the basic job function. A blind person doesn’t have to be considered for a job as a painting restorer, or a deaf person for one as a music critic. Where the job function isn’t in question, however, someone with a disability has to be considered in the same light as all other applicants. If she’s the best qualified in all ways, she should be hired.

An employer can’t ask candidates if they have disabilities, however, except in the context of making sure that they can do the job. A firefighter has to be able to carry 100 pounds up and down a ladder. If a candidate has a bad back, that’s a problem – he may injure himself taking the physical test, or his back may go out on the job at the worst possible time.

Once an employer has hired a person with a disability, he’s under an obligation to make accommodations, to the extent possible, to enable that person to do her job as easily as other employees in similar positions. If she’s in a wheelchair, for example, the employer might ensure that her desk is at an appropriate height for her to work comfortably. Her work space might be located reasonably near the office entrance, with a clear passage to the elevator, the accessible restroom, meeting rooms, and the offices of colleagues with whom she needs to collaborate. If her job makes it possible, she might be allowed to work from home some or most of the time. Accommodation also should be made for signage, communication, and other accessibility factors, including an evacuation plan with which her co-workers are familiar.

None of this means that a disabled person has to be hired – only that she can’t be discriminated against because of her disability. If she’s clearly the best-qualified candidate, and someone else is hired instead, she can question the decision, or even sue.

By the same token, she can be held to the same performance standard as other employees. If she’s not doing her job well, she can be treated as any other employee would...literally. If she’s fired for not performing, that means that any other employee would have been fired for the same level of performance under the same circumstances – the same number of warnings, the same level of support to try to improve performance, etc. Non-discrimination doesn’t mean favoritism, but it does mean fairness. Accommodations level the playing field, so that everyone can play by the same rules.

Education

Federal law requires that any child aged 6 to 21 is entitled to an education appropriate to his needs. For children with disabilities this usually means an Individual Education Plan (IEP), arrived at with the participation of the school, the parents, and often other professionals, as well as the student, if he’s mature enough. If the plan includes an alternative placement (in a private school or another public school with special facilities), the cost is borne by the school district, rather than the parents.

Under the Individuals with Disabilities Education Act, a child has the right to be educated “in the least restrictive environment possible,” which means placing children with disabilities in regular classrooms wherever possible. Thus, a child with a learning disability that affects her math performance might have an individual tutor for math, but still participate with the rest of her class in other subjects. A child using a wheelchair might have a regular class schedule, with help provided if necessary to get from one class to another (in middle or high school) or to assist with activities (in elementary school).

Institutions of higher education, as public facilities (private institutions) or government entities (public colleges and universities) have an obligation to provide admitted students with whatever accommodations they need in order to learn in the same way as students without disabilities. Thus, ASL interpreters, readers, notetakers, and other accommodations are required, as long as they propose no undue administrative or economic hardship for the institution, and as long as they don’t disrupt the normal functioning of the educational program for others.

The fact that there are laws in the U.S. and other countries doesn’t mean that they’re enforced. Furthermore, there is still much to be done around the world. In 1993, the United Nations passed the Standard Rules on the Equalization of Opportunity for Persons with Disabilities, a document that sets out what countries need to do to assure that people with disabilities can live their lives to their full potential. While over 50 countries have laws or constitutions that guarantee disability rights to some extent, there are still nearly 200 that do not recognize disability rights. Thus, knowing what needs to be done is only half – perhaps considerably less than half – the battle. The real work is in changing the social climate and in making sure that what needs to be done gets done.

As with most social change, advocacy has to play a large part here. It was aggressive advocacy on the part of people with disabilities and organizations that support them that made possible the passage of the Americans With Disabilities Act, and advocacy continues to be important in refining what equal access and equal opportunity mean for people with disabilities in the United States. Advocacy is what will change attitudes and laws in the countries that currently don’t recognize disability rights, or that don’t go far enough in pursuing equal opportunity and non-discrimination.

How do you engage in disability advocacy?

Demand enforcement

Where there are laws, they must be enforced in order to have any effect. In the United States, the law essentially covers what is required for accessibility, but it’s not always enforced. First of all, there are no ADA inspectors who make random visits to see whether facilities are accessible, although some state agencies may do that for entities they fund or oversee. Thus, in most cases, ADA standards aren’t brought into play until someone challenges a business, agency, or institution in the courts.

Sometimes just the challenge itself is enough to bring about an acceptable accommodation. When there’s a case of real hardship, however (a business that could suffer seriously as a result of the expense of compliance), or when an entity is simply resistant, and the complainant and the entity can’t come to some agreement, the case has to go to court before anything happens. The more often this occurs, the more various entities pay attention to accessibility, as has been the case over the past several years.

In the case of Lane v. Tennessee, a man who had a crushed hip and pelvis had to crawl up two flights of stairs in order to get to a court hearing. George Lane was no stranger to the court – he’d had previous trouble with local law enforcement. When he was offered the opportunity to be carried up the steps, he refused, fearing that court officers, who, he felt, bore him ill will, might drop him on purpose.

When his case wasn’t heard that morning, he crawled down again, but refused to crawl back up to the courtroom after the noon recess. He was then cited for failure to appear, arrested, and jailed.

When he sued the state of Tennessee for damages, the state claimed that individuals had no right to sue the state. The trial court and the Court of Appeals both ruled in Lane’s favor, and the state appealed to the U.S. Supreme Court. The Supreme Court confirmed Lane’s right to access to the courthouse under Title II of the ADA, which grants access to government facilities for persons with disabilities, and also affirmed his right to sue the state for money damages. Ultimately, the state settled with Lane, and also installed elevators in its previously inaccessible courthouses.

This was a good result for disability rights, and for Mr. Lane and his co-plaintiff, a court reporter who uses a wheelchair and who couldn't get into a number of second-floor courtrooms around the state, a circumstance which limited her ability to do her job. On the other hand, the case dragged on for years before the Supreme Court ruling in 2004, and the state finally settled the damages in 2005. Even when someone wins an ADA case, it can create great stress over a long period, and it takes someone who is both strong and assertive to stick with the process to the end.

Each state, most state funding agencies, most cities and towns, most corporations, and many other entities have an ADA Coordinator. That person is usually the place to start with a complaint or a demand for enforcement. If you get no satisfaction, go to the next level. If it appears that there’s going to be some major difficulty, find a lawyer who has experience in cases involving disability rights, or a disability rights organization that has such lawyers and others on staff, and let them handle the negotiation. In the worst case, you may end up in court, but most ADA complaints are settled long before it gets to that point.

Enlist other advocates to ensure opportunity for people with disabilities

There are many helpful advocacy organizations out there.To enlist help with your disability advocacy, it may be helpful to contact Client Advocacy Protection services (for clients of Vocational Rehabilitation). Additionally, many states have Disability Rights Centers that are often run by people with disabilities themselves and usually have several lawyers on staff to assist people with disabilities regarding legal situations (e.g., ADA compliance or discrimination).

Work with legislators to pass laws that guarantee equality of access and opportunity to people with disabilities

In the matter of access, it’s likely you can find a legislator who has a family member with a disability, or perhaps one who himself has a disability that occasionally makes life difficult. He may be a good candidate to become a champion on this issue, and can help convince colleagues to work on it as well.

If you or your group can become known as a good source of information for this or other legislators – as the experts to call on when they want to know about disability issues – you may be in a good position to persuade legislators and policymakers to pay attention to those issues, and to draft laws to improve the situation of people with disabilities. That means always doing your homework, and always being available to answer questions and make suggestions. It also means being honest in your information and dealings, and being willing to say, “I don’t know, but I’ll find out,” and then following up.

An ideal here is to establish a citizen advisory group that includes people with disabilities and others with knowledge of the field. If that group has a seat at the table when design standards, laws, and other similar issues are being discussed, it is likely that the needs of people with disabilities will be raised and addressed.

Work with architects, developers, building inspectors, etc. to make them aware of the concerns and needs of people with disabilities

Whether you have a disability or not, whether you’re an individual or part of an advocacy or other group, whether your country has laws that address disability rights or not, this tactic can be extremely helpful. If you can collaborate with those who design, construct, and inspect buildings and public spaces, and educate them about the needs of people with disabilities, they will be more likely to ensure accessibility in their projects.

When accessibility is part of a new construction, especially if it’s an integral part of the design, it generally costs about the same as, or only slightly more than, an inaccessible design. The more buildings and spaces that are designed to be accessible, the more accessibility enters into the public consciousness and becomes expected. When are accustomed to seeing individuals with disabilities able to get around easily, they’ll be more inclined to think of access is a right, rather than a privilege or a concession to political correctness.

Enlist the media to help change attitudes and expectations

Using the media is one of the most important – and most effective – activities an advocate can engage in. Human interest stories and radio and TV interviews can put a human face on disability and dispel myths, introducing individuals who become not just “people with disabilities,” but distinct and likable human beings with real needs and real problems. Ignoring such individuals and their needs is harder than ignoring a faceless population of “people with disabilities.” Once the issue of fairness becomes personal, most people will respond positively.

The media can also point out that the real people with disabilities cover a broad swath of society. Many are people who were born with their disabilities, but many others acquired them through war, car accidents, job-or-sports-related injuries, violence, or the simple business of living (aging probably disables more people than any other single factor). More than half of us will either temporarily or permanently experience a disability at some point in our lives. A clear understanding of that statistic can change public perceptions very quickly.

Media stories, interviews, and articles can also highlight accessibility problems that people with disabilities face every day that most of the general public never thinks about: difficulty opening a restroom door with a doorknob; the difficulty of a hearing-impaired tourist being summoned over an airport loudspeaker; the frustration and terror of a person with a speech problem trying to report a fire in an emergency phone call. Media coverage can inform people about what needs to be done to increase access, and about pending laws and regulations the public can support.

They can also present high-profile spokespersons who themselves have disabilities, such as Max Cleland, former Senator from Georgia, who is a multiple amputee as a result of Vietnam War wounds, or actor Michael J. Fox, who has Parkinson’s Disease. Perhaps most importantly, they can offer people with disabilities as positive role models: Chief of Detectives Robert Ironside, played by Raymond Burr, solved crimes from a wheelchair every week for eight years in one of the most popular TV shows of the ‘60’s and ‘70’s.

When talking to the media and having them report on issues, it may be helpful to refer to the Research and Training Center on Independent Living's 7th Edition of the Media Guidelines for Writing and Reporting on People with Disabilities. Over one million copies have been distributed.

Call attention to lack of access whether you have a disability or not

As we’ve mentioned, sometimes a mere notice or complaint will be enough to prompt action on the part of a building owner or business. Even if not, you’ve at least made them aware of the issue...and aware that someone else knows about it as well.

Keep at it indefinitely

Until people with disabilities are hardly noticeable as having disabilities, because they have universal physical, social, and political access, disability advocates and people with disabilities themselves need to keep working for a world where everyone’s needs are addressed and met. Even if that’s ever achieved, it’s likely that it will still take effort to maintain those state of affairs, and to ensure that the world doesn’t return to those unimaginable days when there were places that people in wheelchairs weren’t able to go, messages that individuals with hearing or sight difficulties couldn’t get, and employers, service providers, and businesses shut out people who weren’t exactly like the general population.

In Summary

In the latter part of the 20th century, the rights and needs of people with disabilities were increasingly understood and addressed. In 1990, the United States passed the Americans With Disabilities Act, recognizing and codifying those rights and needs into a set of standards for access to both physical areas (the ability to enter, move around freely in, and use the facilities of buildings and public spaces) and opportunity (access to jobs, services, education, entertainment, etc.) for people with disabilities. The U.N. followed in 1993 with the United Nations Standard Rules on Equalization of Opportunity for Persons with Disabilities. At this writing, over 50 countries worldwide have either passed laws or interpreted or rewritten their constitutions to address disability rights. More recently, as of 2008, the UN Convention on the Rights of Persons with Disabilities has been ratified by at least 21 countries (although the United States has yet to pass this).

Ensuring accessibility for people with disabilities means more than building ramps and accessible restrooms. It calls for a change in basic attitudes, a change that has been at least partially accomplished in the United States and many other countries, but which hasn’t even started in some others. That attitude change won’t have been accomplished until a great majority of people around the world understand that individuals with disabilities are individuals who are not defined by their disabilities. To achieve that end, we have to demand enforcement of laws and regulations that protect those individuals’ rights, work for policy change and the passage of laws and regulations in places where they don’t exist, collaborate with those who design, build, and fund projects where accessibility can be built in, enlist the media to influence public opinion, and keep at it as long as necessary. Only when people with disabilities can live their lives free of unjust barriers will the work be done.

Contributor

Phil Rabinowitz

Online Resources

United States Access Board lists the Uniform Federal Accessibility Standards (alternative to ADA Standards for state and local government entities).

The ADA website has a huge amount of information, including the ADA Standards for Accessible Design.

The DOJ provides information on Accessibility of State and Local Government websites to people with disabilities, with tips for developers and links to a number of sites with more information.

Access Unlimited provides helpful information on how a low-tech tool can be used by almost anyone to determine if building features such as toilets, door widths, and ramp slopes are in compliance with the Americans With Disabilities Accessibility Guidelines (ADAAG).

Anniversary of Americans with Disability Act: July 26 provides facts on disabilities in the U.S. population from the U.S. Census Bureau.

The Disability Resource Network of British Columbia offers descriptions and explanations of various kinds of disabilities and conditions, among other resources.

The U.S. Equal Employment Opportunities Commission provides information about federal laws that make it illegal to discriminate against a job applicant or an employee because of the person's race, color, religion, sex (including pregnancy), national origin, age (40 or older), disability or genetic information. It also provides information for employers on Prohibited Practices.

Job Accommodations Network offers helpful tips to people with disabilities about the accommodations that they might take advantage of as an employee.

Canadian Charter of Rights and Freedoms (part of Canadian Constitution) provides information on the rights that all people are guaranteed, including for those with disabilities.

Canadian Human Rights Act states that all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated, consistent with their duties and obligations as members of society, without being hindered in or prevented from doing so by discriminatory practices based on race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability or conviction for an offence for which a pardon has been granted or in respect of which a record suspension has been ordered.

SF's New Ballpark: Beautiful Access discusses a recently built ballpark that was created to be accessible for all.

Standards for Web Site Accessibility is from Section 508 of the Rehabilitation Act, and sets out regulations for Internet Accessibility for government agencies, with links for each regulation to explanations and suggestions for web developers.

Convention on the Rights of Persons with Disabilities was established to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

United Nations Standard Rules on Equalization of Opportunity for Persons with Disabilities (1993) is an international document intended to focus worldwide attention on the need for equal rights and opportunities for persons with disabilities.

Project Civic Access details settlements with various municipal and state governments concerning accessibility.

List of various ADA publications detailing regulations and technical assistance.

Frequently Asked Questions about ADA.

Web Accessibility Initiative of the World Wide Web Consortium, with detailed information about accessibility for web developers.

http://ctb.ku.edu/en/table-of-contents/implement/phsyical-social-environment/housing-accessibility-disabilities/main

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Tool 1: Worldwide Disability Rights Laws

A list of existing disability rights laws from the Disability Rights Education and Defense Fund. The website has the texts or abstracts of most of these laws, many with an English translation, or with an English summary. Others may be found on the Internet separately, or may need to be researched in libraries or through the controlling government bodies.

Tool 2: The United Nations Standard Rules on the Equalization of Opportunity for Persons with Disabilities

The United Nations Standard Rules on the Equalization of Opportunity for Persons with Disabilities is available in several languages. The Standard Rules are a comprehensive set of standards for countries to institute disability rights and equal opportunity.

From the U.N. website’s introduction to the Standard Rules on the Equalization of Opportunity for Persons with Disabilities:

People with disabilities - as citizens of their societies - should have the same rights and obligations as all other citizens.

There is an increasing awareness by Governments of their obligation to grant equal rights to all of their citizens. It is ultimately the responsibility of all Governments to ensure that disabled people:

· live as dignified and independent a life-style as possible within the community;

· take an active part in the general, social and economic development of society;

· receive education, medical care and social services within the ordinary structures of their societies.

Governments, through their legal system, can protect the rights of persons with disabilities.

Governments can enact laws to guarantee equality and to prevent discrimination. The cost of denying equal opportunities to persons with disabilities is high not only in financial terms, but in the loss of their contribution to society.

A recent trend emphasizes self-care and puts greater emphasis on increased support to the family and community to provide services for persons with disabilities. In many countries, such services continue to be concentrated in the private sector, financed by voluntary contributions. Such programmes are important, but they do not guarantee equal opportunities for disabled people at all levels of society. Governments should provide disabled people with permanent access to basic public services.

The untapped potential of disabled people will be realized only when Governments ensure that equal opportunities are given to all of their citizens.

Equal opportunities enable disabled persons to govern their own lives with self-respect and personal integrity.

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What do we mean by ensuring access for people with disabilities?

___According to the Americans with Disabilities Act (ADA), “the term ‘disability’ means an individual has a physical or mental impairment that substantially limits one or more of his/her major life activities or there is a record of such an impairment or an individual is regarded as having such an impairment.”

Types of disabilities include:

___Physical

___Neurological

___Developmental

___Psychological

___Alcoholism

Types of access include:

___Physical access

___Access to communication and information

___Access to services

___Access to employment

___Access to education

Why try to ensure access for people with disabilities?

___In many countries, it’s the law

___It’s a matter of fairness and respect

___Failing to do so wastes talent and energy

___It makes good business and economic sense

___Many people with disabilities already have a difficult life

___People with disabilities add to the diversity of the community, and that diversity makes everyone’s life richer

___Access for people with disabilities improves access for everyone

When should you try to ensure access for people with disabilities?

___When new public facilities are being designed and/or built

___When there’s an addition, renovation, or repair made to a public facility

___When a historic building is rehabilitated for a public use

___When a community group is working on improving or rehabilitating a public facility or space

___When an organization, institution, or agency that provides services or education is moving or renovating its facility

___When there are complaints about lack of access

Who should ensure access for people with disabilities?

___People with disabilities themselves

___Organizations concerned with disability rights

___Legislators other public officials

___Enforcing agencies

___Employers

___Educators

___Organizations that provide services

___The court system, when necessary

___Architects and planners

___Developers

How do you ensure access for people with disabilities?

___Changing attitudes and educating the public, as well as policymakers, architects and planners, and others about the realities, needs, and rights of people with disabilities may be the most important step

___Demand reasonable accommodation for all types of access

___Tax credits can help make accommodations affordable

___Physical access means access to:

· Public facilities

· Federal, state, and local government facilities

· Outdoor spaces

· Public ways

· Public transportation

___Know the design features that constitute physical access

___Access to communication and information means making accessible or providing

· Signs, posters, and other similar features

· Announcements

· Telephones

· ASL interpretation

· Readers

· Internet

· Television

· Concerts and theater performances

___In the U.S., people with disabilities cannot be denied access to services for which they’re eligible

___Reasonable accommodations must result in a service that’s equivalent to that which is offered to other eligible participants, although it doesn’t have to be exactly the same in all respects

___Employers cannot refuse to hire someone because of a disability if that person is the best-qualified for a job, except where the disability would make it impossible for the person to do the job

___An employer may fire someone with a disability because of poor job performance if other employees in the same situation would be treated the same way

___Section 508 of the Rehabilitation Act guarantees every child ages 6-21 the right to a free public education that meets his needs in the least restrictive environment possible

___In both public and private post-secondary institutions, ADA requires non-discrimination in admissions and accommodation for admitted undergraduate and graduate students with disabilities

Advocate for the rights and needs of people with disabilities:

___Demand enforcement of existing laws and regulations

___Work with legislators, and their aides to pass laws that guarantee equality of access and opportunity to people with disabilities

___Work with architects, planners, developers, and interior designers to make them aware of the concerns and needs of people with disabilities

___Enlist the media to help change attitudes and expectations

___Call attention to lack of access whether you have a disability or not

___Keep at it indefinitely

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GLOBAL

Home Care Services for Seniors

Services to Help You Stay at Home

People who are emotionally healthy are in control of their emotions and their behavior. They are able to handle life’s challenges, build strong relationships, and recover from setbacks. But just as it requires effort to build or maintain physical health, so it is with mental and emotional health. Improving your emotional health can be a rewarding experience, benefiting all aspects of your life, including boosting your mood, building resilience, and adding to your overall enjoyment of life.

Is home care right for my loved one or me?

It’s natural to want to stay at home as you grow older. However, taking a step back to look at the big picture can help you decide whether staying at home for the long term truly is the right step for you. Too often, decisions to leave home are suddenly made after a sudden loss or emergency, making adjustments all the more painful and difficult. Take a look at your options, your budget, and some of the alternatives.

Deciding whether to stay at home

Your home situation is unique, and several factors will weigh in on the best choice for you. Here are some of the issues in evaluating your options:

· Location and accessibility. Where is your home located? Are you in a rural or suburban area that requires a lot of driving? If you’re in an area with more public transit, is it safe and easily accessible? How much time does it take you to get to services such as shopping or medical appointments?

· Home accessibility and maintenance. Is your home easily modified? Does it have a lot of steps or a steep hill to access? Do you have a large yard that needs to be maintained?

· Support available. Do you have family and friends nearby? How involved are they? Are they able to provide you the support you need? Many older adults prefer to rely on family to provide help, but as your needs increase, they might not be able to fill in all of the gaps. It’s important to consider proximity to community services and activities as well.

· Isolation. If it becomes difficult or impossible for you to leave home without help, isolation can rapidly set in. You may not be able to participate in hobbies you once loved, stay involved in community service that kept you motivated, or visit with friends and family. Losing these connections and support is a recipe for depression.

· Medical conditions. No one can predict the future. However, if you or a loved one has a chronic medical condition that is expected to worsen over time, it’s especially important to think about how you will handle health and mobility problems. What are common complications of your condition, and how will you handle them?

· Finances. Making a budget with anticipated expenses can help you weigh the pros and cons of your situation. Alternate arrangements like assisted living can be expensive, but extensive in-home help can rapidly become expensive as well, especially at higher levels of care and live-in or 24-hour coverage.

What can help me stay at home?

You may be used to handling everything yourself, dividing up duties with your spouse, or relying on family members for help. But as circumstances change, it’s good to be aware of all the home care services available that might be of help. What you may need depends on how much support you have, your general health, and your financial situation.

Household maintenance

Keeping a household running smoothly takes a lot of work. If you’re finding it hard to keep up, you can look into laundry, shopping, gardening, housekeeping, and handyman services. If you’re having trouble staying on top of bills and appointments, financial and healthcare management may also be helpful.

Transportation

Transportation is a key issue for older adults. Maybe you’re finding it hard to drive or don’t like to drive at night. Investigating transportation options can help you keep your independence and maintain your social network. You may want to look into local transportation such as buses, reduced fare taxis, and senior transportation options to appointments.

Home modifications

If your mobility is becoming limited, home modifications can go a long way towards making home more comfortable. This can include things such as grab bars in the shower, ramps to avoid or minimize the use of stairs, or even installing new bathrooms on the ground floor.

Personal care

Help with activities of daily living, such as dressing, bathing, feeding, or meal preparation, is called personal care or custodial care. You can hire help with personal care, ranging from a few hours a day to live-in care. People who provide this level of care include personal care aides, home care aides, and home health aides. Home health aides might also provide limited assistance with things such as taking blood pressure or offering medication reminders.

Health care

Some health care services can be provided at home by trained professionals, such as occupational therapists, social workers, or home health nurses. Check with your insurance or health service to see what kind of coverage is available, although you may have to cover some cost out of pocket. Hospice care can also be provided at home.

Day programs

Day programs, also called senior daycare, can help you keep busy with activities and socialization during the day, while providing a break for caregivers. Some day programs are primarily social, while others provide limited health services or specialize in disorders such as early stage Alzheimer’s.

Involving loved ones in home care services

Everyone has different family structures and support. In deciding your own options, take a look at your own family structure, culture, and the expectations you and family members might have. You may have already made alternate plans, preferring to keep family as little involved as possible. Perhaps you and your family want to work out a system where caregiving by family is your primary support for staying in the home. Or it could be that work, health issues or location of your family may not make this feasible. Your family could live far away and prefer that you live with them or move close instead, which would mean giving up a local support system.

While this conversation may not be easy, it’s better to discuss these issues earlier than to wait for an emergency when options may be more limited. An independent opinion, such as a home assessment by a geriatric case manager or consulting with other professionals, can be helpful in defusing family tensions too. You have the final decision as to where you want to live, but input from family members is also helpful. Are they worried about your safety or a health problem such as Alzheimer’s that will eventually require heavy care? Listening to concerns and keeping communication open is key.

Even if you have strong family support, be open to the idea of having other help too. Many people have an initial feeling of “not wanting strangers in the house.” But caregiving can be physically and emotionally exhausting, especially if it is primarily on one person such as a spouse. Your relationships will be healthier if you are open to the idea of getting help from more than one source.

Finding the right home care services for you

Once you’ve figured out your needs, it’s time to evaluate what home care services are right for you.

Finding outside providers

· Start with your networks. Sometimes the best referrals come through family, friends, neighbors, or colleagues. There may be a neighbor interested in brief check-ins or providing yard maintenance, for example. If you’re part of a local church or synagogue, there may be meals or socialization activities available. Ask the people you know if they have care providers they have used and trusted. Your doctor or other healthcare professional may be able to provide referrals as well.

· Utilize older adult resources. Your local Area Agency on Aging, Eldercare resources, or senior centers are good places to start. For home health care you should check with your doctor or other healthcare professional to get the referral process started, and find out exactly what is covered by insurance.

Agency or independent provider?

As you search for home care services, especially personal care and health care, you will probably start getting referrals from full-service agencies, registries, and independent providers. Which is the best option? Here are some issues to consider when considering an agency, registry, or independent provider.

· Full-service agencies usually come at a higher cost, which can be substantial. However, agencies also provide prescreened applicants who have already had background checks. Since the caregiver works for the agency, tax issues and billing can be simpler. You can also check the licensing history of agencies and find out if they are bonded for issues such as theft. If a caregiver quits or is not working out, a replacement can be rapidly provided, and coverage may also be provided if a caregiver calls in sick.

· Registries and independent providers come at a lower cost, but require careful legwork on your part. You need to be aware of any tax and Social Security requirements since in most cases you will be hiring a home care helper as an employee. It’s also good to consider careful background checks and identity verification, since there is no independent verification. You are responsible for backup coverage in case of illness or sudden termination. Even if you are considering these options due to a word of mouth referral, it’s good to be aware of these issues.

Tips for hiring home care providers

How you go about hiring home care providers will partially depend on what kind of help you are looking for, as well as your country of residence. For example, hiring someone to handle shopping or yard maintenance is different from someone to provide hands-on or live-in care. However, there are some basic tips to keep in mind. Remember that the more time and homework you spend in the initial hiring process, the better the chances of success.

· Interview several candidates, in person, before hiring. You could do an initial interview at a public place if you wanted to meet the person first before bringing them to your home. Even if you are working with an agency, it’s important to meet the person who has been matched to make sure it is the right fit.

· Be specific about the tasks that you need, and be sure that the person you are considering is comfortable with those tasks. Ask open-ended questions to assess the person’s experience and competence with these tasks. If you’re hiring an independent provider, it’s a good idea to make a contract outlining the tasks, payment procedures, and termination procedures.

· If you are working with an agency, make sure you understand what is covered. What exactly is covered in a contract? Are there additional fees that apply to specific services or add-ons? If needed, what are the procedures for termination or requesting another provider?

· Check references carefully. Always check references carefully from more than one source. Listen carefully to the person’s tone and information. Are they enthusiastic about the candidate, or are the answers vague and short? Also, look for unexplained gaps in references.

· Do background checks on top candidates. If you’re working through an agency, background checks are often provided, but you’ll want to check exactly what is covered and how the check is done. If you’re considering an independent provider, you can check on the Internet, your local police department, legal aid service, or an attorney for referrals to individuals or companies that do this.

· Don’t be afraid to move on if it’s not the right fit. It’s especially important that you feel comfortable with your provider, since this person is providing services in the privacy of your own home. If you don’t, try talking to the provider to see if that helps. Sometimes miscommunication can be ironed out. If not, don’t be afraid to find another provider and give your current provider notice.

I’m worried my loved one is not safe at home. What should I do?

Perhaps you’ve noticed that your loved one’s home has become much messier than it used to be, or that he or she is wearing stained, dirty clothes. Maybe it’s clear that your loved one hasn’t had a bath for a while. Or when you open the refrigerator, there is hardly any food inside. Or you may be worried sick about a recent fall or seeing a pan burning on the stove.

It can be frightening and painful to see a loved one who is losing the ability to care for him- or herself. Sometimes, declines can happen gradually. Or a sudden change in health, recent fall, depression, or loss of a key local support can trigger difficulty. Regardless of the reason, if you’re worried about safety or the condition of the home, it’s important to bring it up with your loved one to see what can be done.

Tips on talking to your loved one

· Try to find the real reasons behind resistance. A seemingly resistant loved one could be frightened that he or she is no longer able to do tasks that were formerly so easy, or chronic untreated pain may be making it difficult. It might be more comfortable to deny it and minimize problems. Perhaps he or she is grieving the loss of a loved one, or frustrated at not being able to connect with friends. If your loved one has a hard time getting out and is losing support, he or she is also at risk for depression.

· Express your concerns as your own, without accusing. A loved one might be more open to your honest expressions of concern. For example, instead of saying “It’s clear you can’t take care of yourself anymore. Something needs to be done,” try “I’ve really been worried about you. It hurts me to think that you might not be getting everything you need. What do you think we should do?”

· Respect your loved one’s autonomy and involve him or her in decisions. Unless your loved one is incapacitated, the final decision about care is up to him or her. You can help by offering suggestions and ideas. For example, what home care services might bridge the gap? If you’re worried that home care might not be enough, what other options are available? You can frame it as something to try temporarily instead of trying to impose a permanent solution.

· Enlist other help. Does your loved one know others who have used home care services, or have had to move? Talking to others who have had positive experiences can sometimes help remove fear of the unknown. You may want to consider having a meeting with your loved one’s doctor or hire a geriatric care manager. Sometimes hearing feedback from an unbiased third party can help a loved one realize that things need to change.

If your loved one is becoming incapable of making decisions

Are you worried that your loved one is putting him or herself in danger? Someone with worsening memory problems, for example, may forget to turn the gas off or wander outside and get lost. This may be a concern with diseases such as later stage Alzheimer’s disease or other dementias, Parkinson’s disease, or stroke.

If you have the opportunity, its best to bring this up before your loved one has reached the level of incapacity, although it’s a hard conversation to have. If your loved one has designated someone with durable power of attorney in case of incapacity, then that person can make decisions if your loved one is no longer able to. If not, then you may need to petition for guardianship or conservatorship. You may want to consult an advocacy group and an elder law attorney to best understand your options.

More help for senior home care services

· Senior Housing Options: Making the Best Senior Living Choices

· Independent Living for Seniors: Choosing a Retirement Home of Retirement Facility

· A Guide to Nursing Homes: Skilled Nursing Facilities and Convalescent Homes

· Adult Day Care Services: Finding the Best Center for Your Needs

· Assisted Living Facilities: Tips for Choosing a Facility and Making the Transition

Healthy aging and older adult lifestyles

· Staying Healthy As You Age: How to Feel Young and Live Life to the Fullest

· Age-Related Memory Loss: What's Normal, What's Not, and When to Seek Help

· Age and Driving: Warning Signs and Knowing When to Stop

· Eating Well as You Age: Nutrition and Diet Tips for Healthy Eating as You Age

Resources and references

General information about home care services for seniors

National Aging in Place Council – Provides practical advice for older adults for aging in place at home, from evaluating risks to transportation advice. Includes booklets to download. (NAIPC)

Finding home care services for seniors in the U.S

Eldercare Locator – A national searchable database of community resources for elder care, from transportation to meals and home care. You can also call (800)677-1116. (US Department of Health and Human Services)

Finding home care services for seniors internationally

Help at Home – A guide to understanding how to get care and support for seniors in the UK. (Age UK)

Aged Care Information – Information on contacts and services available to assist you with ageing and aged care issues in Australia, including home care services for seniors. (Australian Government Depart of Health and Ageing)

Planning for Future Housing (PDF) – Information on housing options for seniors in Canada. (Government of Canada)

Meals on wheels – in the U.S.

Meals on Wheels: Find a U.S. Program – A searchable database that allows you to find a Meals on Wheels program in your area of the U.S. (Meals on Wheels Association of America)

Meals on wheels – internationally

Meals at Home Services (UK) – In the UK, find out if you qualify to receive meals delivered to your home and access a directory of providers in your area. (Directgov)

Meals on Wheels Australia – Find your local Meals on Wheels service in Australia. (Meals on Wheels Australia)

Find a Meals on Wheels Location in Canada – Find a Meals on Wheels and other senior meal programs in your area of Canada. (MealCall)

Hiring a home care service provider

Hiring Home Care On Your Own - Evaluation – Describes how to hire home care providers. (National Organization for Empowering Caregivers)

Publication 926 (2012), Household Employer's Tax Guide – What you need to know about employment taxes when you hire household help in the U.S. (Internal Revenue Service)

Hiring Private Duty Home Care Workers: Why Work through an Agency? – Article with case examples defining the pros and cons of hiring independent providers versus agencies. (Today’s Caregiver)

Finding a geriatric care manager or elder law attorney

Legal and financial planning – Tailored towards those with Alzheimer’s, provides good general overviews of planning ahead for legal and financial issues, including powers of attorney, estate planning, trusts, and finding an elder law attorney. (Fisher Center for Alzheimer’s Research Foundation)

National Academy of Elder Law Attorneys – Public section of site that defines elder law, issues to consider, questions to ask when finding an attorney, and how to find an elder law attorney in the U.S. (NAELA)

National Association of Geriatric Care Managers – Describes what a geriatric care manager is, qualifications and credentials, questions to ask, and how to find one. (NAPGCM)

Authors: Joanna Saisan, M.S.W., and Monika White, Ph.D. Last updated: November 2014.

http://www.helpguide.org/articles/senior-housing/home-care-services-for-seniors.htm

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AUSTRALIA

Disability and Carers

DSS helps to support people with disability through programs and services and benefits and payments. DSS also helps to support Australians' mental health. Further support is provided through grants and funding for organisations delivering services for people with disability and people with mental illness.

DSS works to support carers of people with a disability or severe medical condition, or frail aged, through programs and services, and benefits and payments for carers.

More information is available under publications and articles, standards, and related agencies and sites.

https://www.dss.gov.au/our-responsibilities/disability-and-carers

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Senior Housing Options

Making the Best Senior Living Choices

Whether your search for senior housing is prompted by a serious medical condition or the desire for a lifestyle change, finding the right place to live can be challenging and stressful for both you and your family. However, the earlier you assess your current needs and how those needs may evolve over time, the more choices and control you’ll have. By learning about the different types of senior housing available, you can make the choice that’s right for you and ensure you enjoy a happy, healthy, and fulfilling home environment as you age.

What is senior housing?

Aging is a time of adaptation and change, and planning your future housing needs is an important part of ensuring that you continue to thrive as you get older. Of course, every older adult is different, so the senior housing choice that’s right for one person may not be suitable for you. The key to making the best choice is to match your housing with your lifestyle, health, and financial needs. This may mean modifying your own home to make it safer and more comfortable, or it could mean moving to a housing facility with more support and social options available on site. It could even involve enrolling in a network of like-minded people to share specialized services, or moving to a retirement community, an apartment building where the majority of tenants are over the age of 65, or even a nursing home.

When deciding on the senior housing plan that’s right for you, it’s important to consider not only the needs you have now but also those you may have in the future:

· Physical and medical needs. As you age, you may need some help with physical needs, including activities of daily living. This could range from shopping, cleaning, cooking, and looking after pets to intensive help with bathing, moving around, and eating. You or a loved one may also need increasing help with medical needs. These could arise from a sudden condition, such as a heart attack or stroke, or a more gradual condition that slowly needs more and more care, such as Alzheimer’s disease.

· Home maintenance. If you’re living alone, your current home may become too difficult or too expensive to maintain. You may have health problems that make it hard to manage tasks such as housework and yard maintenance that you once took for granted.

· Social and emotional needs. As you age, your social networks may change. Friends or family may not be as close by, or neighbors may move or pass on. You may no longer be able to continue driving or have access to public transportation in order to meet up with family and friends. Or you simply may want to expose yourself to more social opportunities and avoid becoming isolated and housebound.

· Financial needs. Modifying your home and long-term care can both be expensive, so balancing the care you need with where you want to live requires careful evaluation of your budget.

Preparing yourself for change

Whether you’re considering home care services or relocating to a retirement home, planning your future housing needs often runs hand-in-hand with facing up to some loss in your level of independence. Understandably, the prospect of losing independence can be overwhelming for many older adults. It can bring with it feelings of shame, embarrassment, fear, confusion, and anger.

But it’s important to remember that you’re not alone in this. Most of us over the age of 65 will require some type of long-term care services. And there’s nothing to be ashamed about in admitting you need more help than you used to. After all, we’ve all had to rely on others at some point during our adult lives, be it for help at work, home or vehicle repairs, professional or legal services, or simply moral support. For many of us, independence is recognizing when it’s time to ask for help.

Coming to terms with changes in your level of independence

It’s normal to feel confused, vulnerable, or even angry when you realize you can’t do the things you used to be able to do. You may feel guilty at the prospect of being a burden to family and friends, or yearn for the way things used to be. By acknowledging these feelings and keeping your mind open to new ways to make life easier, you’ll not only cope with your change in situation better but may also be able to prolong other aspects of your independence for longer.

· Communicate your needs with family and loved ones. It’s important to communicate with family members your wishes and plans, and listen to their concerns. For example, long distance family members might think it’s better for you move close by so that they can better coordinate your care. However, you might not want to uproot yourself from your community and friends. Similarly, just because you have family close by does not automatically mean they will be able to help with all your needs. They may also be balancing work, their own children, or other commitments. Clear communication from the outset can help avoid misunderstandings or unrealistic assumptions.

· Be patient with yourself. Losses are a normal part of aging and losing your independence is not a sign of weakness. Allow yourself to feel sad or frustrated about changes in your housing situation or other aspects of your life without beating yourself up or labeling yourself a failure.

· Be open to new possibilities. Your loved ones may offer suggestions about senior housing options or other ways to make your life easier. Rather than dismissing them out of hand, try to keep an open mind and discuss the possibilities. Sometimes, new experiences and situations can lead to you developing new friendships or finding new interests you’d never considered before.

· Find a way of accepting help that makes you comfortable. It can be tough to strike a balance between accepting help and maintaining as much of your independence as possible. But remember that many people will feel good about helping you. If it makes it easier, offer to trade chores. For example, you can sew on buttons in exchange for some heavy lifting or cleaning chores. Or return other people’s help by “paying it forward.” Volunteer your time to help or teach others, while at the same time expanding your own social network.

Helping a loved one cope with a loss of independence

It’s painful to see a loved one struggling to maintain their home or themselves. Maybe clothes are not as clean as they used to be or the house is getting increasingly messy. Or maybe your loved one is experiencing frequent falls or memory lapses such as leaving the stove on or the door unlocked. While you can’t force a loved one to accept help or move home, unless they are a danger to themselves or others, you can provide them with information and reassurance. Don’t take it on alone. Brainstorm with other family and friends and talk with your loved one’s medical team. Sometimes a senior will listen more to a doctor, care manager, or other impartial party.

· Explain how care may prolong independence. Accepting some assistance now may help your loved one remain in his or her home for as long as possible. Or if your loved one considers an assisted living facility now, for example, it may negate the need for a nursing home later on.

· Help your loved one cope with the loss of independence. Encourage your loved one to stay active, maintain relationships with friends and family, and to keep an open mind about new interests, such as trying a day care facility.

· Suggest a trial run for home care services or other changes to give your loved one a greater sense of control over his or her situation. A trial run let’s your loved one have the chance to experience the benefits of assistance or change in living situation before having to commit to anything long-term.

· Don’t expect to handle all care yourself. There are only 24 hours in a day, and you need to be able to balance your own health, family, work, and finances. Caregiving can start with small assistance, and rapidly grow to an all-encompassing task. Getting help is not a sign of weakness. It means you care enough about your loved one’s health and safety to realize when the responsibility is too great. Educate yourself about the resources that can help your loved one, and see if other family members can also help.

What are your senior housing options?

There is a broad array of housing options available to seniors, from staying in your own home to specialized facilities that provide round-the-clock nursing care. The names of the different types of housing options can sometimes be confusing, as the terminology can vary from region to region. For example, the term “assisted living” can mean one thing in one state or country and something slightly different elsewhere. However, in general, the different types of senior housing vary according to the amount of care provided for activities of daily living and for medical care. When researching a senior housing option, make sure it covers your required level of care and that you understand exactly the facilities offered and the costs involved.

Senior housing option 1: Aging in place

Staying at home as you age has the advantage of keeping you in a familiar place where you know your neighbors and the community. There is a wide range of home care services that can help you maintain your independence within the comfort of your own home, from in-home care to day care. You may also be able to make home repairs or modifications to make your life easier and safer, such as installing a wheelchair ramp, bathtub railings, or emergency response system.

Staying at home may be a good option if:

· You have a close network of nearby family, friends, and neighbors

· Transportation is easily accessible, including alternate transportation to driving

· Your neighborhood is safe

· Your home can be modified to reflect your changing needs

· Home and yard maintenance is not overwhelming

· Your physical and medical needs do not require a high level of care

· You have a gregarious personality and are willing and able to reach out for social support

· You fall within the geographical confines of an integrated community, such as a “village” or NORC (Naturally Occurring Retirement Community)

Aging in place is a less effective senior housing option once your mobility is limited. Being unable to leave your home frequently and socialize with others can lead to isolation, loneliness, and depression. So, even if you select to age in place today, it’s important to have a plan for the future when your needs may change and staying at home may no longer be the best option.

Senior housing option 2: The Village concept

The Village solution to aging in place is a relatively new concept, enabling active seniors to remain in their own homes without having to rely on family and friends. Members of a “village” can access specialized programs and services, such as transportation to the grocery store, home health care, or help with household chores, as well as a network of social activities with other village members.

Senior housing option 3: Naturally Occurring Retirement Communities (NORC)

Like the village concept, Naturally Occurring Retirement Communities (NORC) enable seniors to stay in their own homes and access local services, volunteer programs, and social activities, but tend to exist in lower income areas. A NORC may be as small as a single urban high rise, or it may spread out over a larger suburban area. See Related Links for help finding a NORC program in the U.S.

Senior housing option 4: Independent living

Independent living is a general name for any housing arrangement designed exclusively for seniors. Other terms include retirement communities, retirement homes, senior housing, and senior apartments. These may be apartment complexes, condominiums, or even free-standing homes. In general, the housing is friendlier to older adults—it’s more compact, easier to navigate, and includes help with outside maintenance. Sometimes recreational centers or clubhouses are also available on site.

You may want to consider independent living if:

· You see needing minor assistance with activities of daily living

· You’d like a place that does not require a lot of maintenance and upkeep

· You like the idea of socializing with peers and having activity options nearby

If you don’t want to live exclusively with others your own age, there are alternatives to an independent living community. You can consider moving in with a family member, or simply moving to a more accessible apartment or condo. The key is being in an area with good access to transportation, services, and social networks.

Senior housing option 5: Assisted living

Also known as residential care, board and care, congregate care, adult care home, adult group home, alternative care facility, or sheltered housing. In general, assisted living is a housing option for those who need help with some activities of daily living, including minor help with medications. Costs tend to vary according to the level of daily help required, although staff is available 24 hours a day.

Some assisted living facilities provide apartment-style living with scaled-down kitchens, while others provide rooms. In some, you may need to share a room unless you’re willing to pay a higher cost. Most facilities have a group dining area and common areas for social and recreational activities.

An assisted living facility may be a good choice if:

· You need more personal care services than are feasible at home or in an independent living retirement community

· You don’t need the round-the-clock medical care and supervision of a nursing home

What is a Continuing Care Retirement Community ?

Continuing Care Retirement Communities (CCRCs) are facilities that include independent living, assisted living, and nursing home care in one location, so seniors can stay in the same general area as their housing needs change over time. There is normally the cost of buying a unit in the community as well as monthly fees that increase as you require higher levels of care. It also can mean spouses can still be very close to one another even if one requires a higher level of care.

Senior housing option 6: Nursing homes

A nursing home is normally the highest level of care for older adults outside of a hospital. While they do provide assistance in activities of daily living, they differ from other senior housing in that they also provide a high level of medical care. A licensed physician supervises each resident’s care and a nurse or other medical professional is almost always on the premises. Skilled nursing care and medical professionals such as occupational or physical therapists are also available.

A nursing home may be a good choice if:

· Both your medical and personal care needs have become too great to handle at home or in another facility. This may be due to a recent hospitalization, or a chronic illness which has gradually been worsening.

· You need a higher level of care temporarily after a hospitalization, but it’s anticipated you will be able to return to home or another facility after a period of time.

Assessing your senior housing needs

When evaluating your senior housing needs, consider the following issues:

· Level of Care. No one can predict the future. However, if you or a loved one has a chronic medical condition that is expected to worsen over time, it’s especially important to think about how you will handle health and mobility problems. What are common complications of your condition, and how will you handle them? Are you already at the point where you need daily help?

· Location and accessibility. Even if you are completely independent at this time, circumstances can change. It pays to think a little about your current location and accessibility of your current home. For example, how far is your home from shopping, medical facilities, or other services? If you can no longer drive, what kind of transportation access will you have? Can your home be easily modified? Does it have a lot of steps or a steep hill to navigate? Do you have a large yard that needs to be maintained?

· Social support. How easy is it for you to visit friends, neighbors, or engage in hobbies that you enjoy? If it becomes difficult or impossible for you to leave your home, you’ll become isolated and depression can rapidly set in.

· Caregiving Support. You will want to consider housing where both your current and future needs can be met. Even if family members can commit to caregiving, they might not be able to fill in all the gaps if physical and medical needs become extreme. The more thought you put into your future, the better chance your needs will be met.

· Finances. Making a budget with anticipated expenses can help you weigh the pros and cons of your situation. Senior housing options like assisted living can be expensive, but extensive in-home help can also rapidly mount in cost, especially at higher levels of care and live-in or 24-hour coverage. You may be able to purchase insurance to offset some of the costs of long-term care. In the U.S., the Department of Housing and Urban Development (HUD) provides some housing options for seniors under a certain income limit, while Medicaid covers the bulk of nursing home care for those with limited income and assets.

· Need a professional assessment? Geriatric care managers can provide an assessment as well as assistance with managing your situation, including crisis management, interviewing in-home help, or assisting with placement in an assisted living facility or nursing home. See the Resources section below to learn more about geriatric care managers.

Comparison of Senior Housing Options in the U.S.
Feature or Service	Independent Living	Assisted Living	Nursing Home
Approx. Cost per Month	$1,500 – 3,500	$2,500 – 4,000	$4,000 – 8,000
Meals per Day	Meal Plan Options	3+	3+
Medication Management	No	Yes	Yes
Personal Care	No	Yes	Yes
Mobility Assistance	No	Yes	Yes
Accepts Wheelchairs	Yes	Varies	Yes
Alzheimer's/Dementia Care	No	Varies	Varies
On-Site Nurses	No	Varies	Yes
Transportation	Most Yes	Most Yes	Yes
Incontinence Care	No	Yes	Yes
Housekeeping	Varies	Yes	Yes
Source: APlaceforMom.com

More help for senior housing

· Home Care Services for Seniors: Services to Help You Stay at Home

· Assisted Living Facilities: Tips for Choosing a Facility and Making the Transition

· Independent Living for Seniors: Choosing a Retirement Home of Retirement Facility

· A Guide to Nursing Homes: Skilled Nursing Facilities and Convalescent Homes

Resources and references

Choosing senior housing

Key to Choice (PDF) – A guide to help you assess your lifestyle needs and evaluate the many housing and service options available to seniors. Includes samples of budgets and evaluations. (The Metropolitan Area Agency on Aging)

Steps to Choosing Long-Term Care – Guidance for choosing from many types of senior care, starting with in-home services. Includes help determining the right kind of care, how your needs may change over time, your long-term care choices, paying for care, and assessing different facilities. (Medicare.gov)

Senior Citizens: Homes and Communities – A comprehensive look at senior housing from the U.S. government’s Department of Housing and Urban Development. Includes links to HUD-approved housing counselors and related government sites. (HUD)

Types of senior housing

The Village: A Growing Option for Aging in Place (PDF) – Fact sheet about the benefits and challenges of the village model for aging in place. (AARP)

NORCs, an Aging in Place Initiative – Information on Naturally Occurring Retirement Communities with a directory of programs in the U.S. (JFNA)

Eldercare Locator – Offers database of local housing options and community services for older adults and their families. Help is also available by calling 1-800-677-1116. (U.S. Administration on Aging)

National Association of Professional Geriatric Care Managers – Provides information about the geriatric care manager field and a searchable database of care managers. (NAPGCM)

Low-Rent Apartment Search – Searchable database from The Department of Housing and Urban Development. (HUD)

Medicaid Rules – Learn about Medicaid eligibility and spousal protections. (Elder Law Answers)

A Guide to Senior Housing Options – Overview of some of the different types of senior housing options available. (A Place for Mom)

Understanding costs of senior housing

Medicare Coverage of Skilled Nursing Facility Care – Detailed information about Medicare coverage of skilled nursing care, as well as ways to get help paying for skilled care. (Centers for Medicare and Medicaid services)

Guide to Long-Term Care Insurance – Information about policies, how to evaluate them, and questions to ask. (America’s Health Insurance Plans)

Coping with loss of independence

Aging and Loss of Independence (PDF) - Tips on understanding and coping with a loss of independence. (Cornell University)

Authors: Lawrence Robinson, Joanna Saisan, M.S.W., and Monika White, Ph.D. Last updated: November 2014.

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Senior Housing Options

Making the Best Senior Living Choices

What is senior housing?

When deciding on the senior housing plan that’s right for you, it’s important to consider not only the needs you have now but also those you may have in the future:

· Financial needs. Modifying your home and long-term care can both be expensive, so balancing the care you need with where you want to live requires careful evaluation of your budget.

Preparing yourself for change

Coming to terms with changes in your level of independence

Helping a loved one cope with a loss of independence

What are your senior housing options?

Senior housing option 1: Aging in place

Staying at home may be a good option if:

· You have a close network of nearby family, friends, and neighbors

· Transportation is easily accessible, including alternate transportation to driving

· Your neighborhood is safe

· Your home can be modified to reflect your changing needs

· Home and yard maintenance is not overwhelming

· Your physical and medical needs do not require a high level of care

· You have a gregarious personality and are willing and able to reach out for social support

· You fall within the geographical confines of an integrated community, such as a “village” or NORC (Naturally Occurring Retirement Community)

Senior housing option 2: The Village concept

Senior housing option 3: Naturally Occurring Retirement Communities (NORC)

Senior housing option 4: Independent living

You may want to consider independent living if:

· You see needing minor assistance with activities of daily living

· You’d like a place that does not require a lot of maintenance and upkeep

· You like the idea of socializing with peers and having activity options nearby

Senior housing option 5: Assisted living

An assisted living facility may be a good choice if:

· You need more personal care services than are feasible at home or in an independent living retirement community

· You don’t need the round-the-clock medical care and supervision of a nursing home

What is a Continuing Care Retirement Community ?

Senior housing option 6: Nursing homes

A nursing home may be a good choice if:

· You need a higher level of care temporarily after a hospitalization, but it’s anticipated you will be able to return to home or another facility after a period of time.

Assessing your senior housing needs

When evaluating your senior housing needs, consider the following issues:

Comparison of Senior Housing Options in the U.S.
Feature or Service	Independent Living	Assisted Living	Nursing Home
Approx. Cost per Month	$1,500 – 3,500	$2,500 – 4,000	$4,000 – 8,000
Meals per Day	Meal Plan Options	3+	3+
Medication Management	No	Yes	Yes
Personal Care	No	Yes	Yes
Mobility Assistance	No	Yes	Yes
Accepts Wheelchairs	Yes	Varies	Yes
Alzheimer's/Dementia Care	No	Varies	Varies
On-Site Nurses	No	Varies	Yes
Transportation	Most Yes	Most Yes	Yes
Incontinence Care	No	Yes	Yes
Housekeeping	Varies	Yes	Yes
Source: APlaceforMom.com

More help for senior housing

· Home Care Services for Seniors: Services to Help You Stay at Home

· Assisted Living Facilities: Tips for Choosing a Facility and Making the Transition

· Independent Living for Seniors: Choosing a Retirement Home of Retirement Facility

· A Guide to Nursing Homes: Skilled Nursing Facilities and Convalescent Homes

Resources and references

Choosing senior housing

Types of senior housing

The Village: A Growing Option for Aging in Place (PDF) – Fact sheet about the benefits and challenges of the village model for aging in place. (AARP)

NORCs, an Aging in Place Initiative – Information on Naturally Occurring Retirement Communities with a directory of programs in the U.S. (JFNA)

National Association of Professional Geriatric Care Managers – Provides information about the geriatric care manager field and a searchable database of care managers. (NAPGCM)

Low-Rent Apartment Search – Searchable database from The Department of Housing and Urban Development. (HUD)

Medicaid Rules – Learn about Medicaid eligibility and spousal protections. (Elder Law Answers)

A Guide to Senior Housing Options – Overview of some of the different types of senior housing options available. (A Place for Mom)

Understanding costs of senior housing

Guide to Long-Term Care Insurance – Information about policies, how to evaluate them, and questions to ask. (America’s Health Insurance Plans)

Coping with loss of independence

Aging and Loss of Independence (PDF) - Tips on understanding and coping with a loss of independence. (Cornell University)

Authors: Lawrence Robinson, Joanna Saisan, M.S.W., and Monika White, Ph.D. Last updated: November 2014.

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7Assistive and Mainstream Technologies for People with Disabilities

As this story illustrates, people with conditions such as arthritis may encounter the myriad technologies of modern life in somewhat different ways than people without disabilities. Doorknobs, kitchen tools, or shirt buttons that do not produce a second thought for most people can become obstacles for someone with arthritis. In turn, a lever door handle substituted for a doorknob may be a significant aid to that individual—and also be welcomed by many others, such as parents juggling packages and children. A simple buttonhook device, although not useful to most people, can assist someone who finds it difficult to manipulate buttons. Thus, although certain technologies create obstacles to independence for people with disabilities, other technologies—some of which are designed to accommodate impairments and some of which are designed for general use—provide the means to eliminate or overcome environmental barriers. These helpful technologies may work by augmenting individual abilities (e.g., with glasses or hearing aids), by changing the general environment (e.g., with lever door handles or “talking” elevators), or by some combination of these two types of changes (e.g., with computer screen readers).

Many kinds of technologies, such as medical equipment, voting machines, and buses, cannot be purchased or selected individually by consumers and are, in a certain sense, public goods even when they are privately owned. Their development and accessibility often depend on policies that require or encourage public and private organizations to make environments, services, and products more accessible. Other public policies tackle environmental barriers by encouraging consumer awareness of assistive and accessible products or by helping people purchase or otherwise obtain such products. Yet other policies promote research and development to make all sorts of technologies more usable and accessible to people with different abilities.

This chapter examines the role of assistive and mainstream technologies in increasing independence and extending the participation in society of people with disabilities. It also considers how technologies may act as barriers. Many of the topics discussed are themselves worthy of evaluation in separate reports, so the committee’s review has necessarily been limited in scope and depth. The chapter begins with definitions of assistive technology, mainstream technology, and universal design. It then briefly reviews public policies affecting the availability of assistive and accessible technologies, summarizes information on the use of assistive technologies, discusses obstacles to the development of better products and the effective use of existing products, and highlights how mainstream technologies can limit or promote independence and community participation. The chapter concludes with recommendations.

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TYPES OF TECHNOLOGIES USED OR ENCOUNTERED BY PEOPLE WITH DISABILITIES

Though coming from quite different histories, the purpose of universal design and assistive technology is the same: to reduce the physical and attitudinal barriers between people with and without disabilities.

Story et al. (1998, p. 11)

The intersection between technology and disability is a complex topic for a number of reasons. As noted earlier, technology can be a barrier or a means to independence and participation in the community. For some people, technologies, such as mechanical ventilators, allow life itself—as long as systems are in place to protect the users when natural disasters or other events disrupt electrical power, caregiving arrangements, and other essential services.

As the term is used in this chapter, technology generally refers to equipment, devices, and software rather than to medications (e.g., drugs to control the potentially disabling effects of epilepsy), procedures (e.g., physical therapy techniques to restore function), administrative systems (e.g., rules and implementing mechanisms for determining eligibility for disability income benefits), or a body of knowledge (e.g., rehabilitation medicine). In other contexts, the term may be used much more comprehensively to refer to some or all these additional areas.

Assistive technologies and general use or mainstream technologies, as defined below, may serve similar or quite different purposes in people’s lives. Whether a technology is assistive or mainstream may affect how people acquire the technology. For example, certain assistive technologies, such as prostheses, require a physician’s prescription and expert training in safe and effective use. The distinction may also affect what health plans pay for, as discussed in Chapter 9. In addition, for any given product category, a mainstream or general use technology is likely to have larger prospective markets and thus may be more likely than an assistive technology to attract private-sector innovation and investment without government incentives or rules.

Assistive Technology Defined

The Technology-Related Assistance for Individuals with Disabilities Act of 1988 and the Assistive Technology Act of 1998, which replaced the 1988 legislation, define an assistive technology device as “[a]ny item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities” (29 U.S.C. 3002).¹ This policy definition is extremely broad and can be interpreted to cover a very large range of products—such as Velcro and microwave ovens—that are useful to people with disabilities but that are not specifically designed or adapted to assist them.

The broad legislative language intentionally permitted the information and funding programs created by the legislation to cover general use or mainstream products if, for a given individual, such a product worked as well as or better than a specially designed product. Nonetheless, as noted in a report developed for the American Academy of Physical Medicine and Rehabilitation and the Foundation for Physical Medicine and Rehabilitation, “a health plan or program could never include coverage [for assistive technology as defined in the Act] … because the benefit would be completely open-ended” (AAPM&R/The Foundation for PM&R, 2003, p. 9). For similar reasons, most discussions of assistive technology, at least implicitly, focus more specifically on items “designed for and used by individuals with the intent of eliminating, ameliorating, or compensating for” individual functional limitations (OTA, 1982, p. 51, emphasis added).²

Environmental modifications, for example, the widening of a bathroom doorway, are not explicitly covered by the Assistive Technology Act, although equipment (e.g., grab bars) installed during modifications is included. Building modifications are sometimes referred to as “fixed assistive technology,” not all of which involves equipment installations (see, e.g., Tinker et al. [2004]).

Assistive technologies can be subdivided to distinguish many kinds of products. For example, personal assistive devices—such as canes, scooters, hearing aids, and magnifying glasses—act, essentially, as extensions of a person’s physical capacities. They often move with the person from place to place. Adaptive assistive devices make an inaccessible mainstream or general use device usable by a person with a disability, although usually at additional cost. One example is the computer screen reader, which allows people with low vision to hear what is shown on a computer screen, for example, text documents. To operate effectively, computer screen readers require appropriate design of what appears on the screen (e.g., text labels for graphics or photos) (Tedeschi, 2006; see also Vascellaro [2006] and http://www.w3.org). Other examples of adaptive assistive technologies are the hand controls that operate braking and acceleration systems for automobiles.

Certain assistive technologies qualify as durable medical equipment under the Medicare statute and regulations. That is, they can withstand repeated use, are primarily and customarily used to serve medical purposes, are generally not useful to individuals in the absence of an illness or injury, and are appropriate for use in the home (42 CFR 414.202). The Medicare statute also mentions certain other categories of assistive products, such as prosthetics and orthotics. In general, insurance plans do not cover assistive technologies, as broadly defined by the Assistive Technology Act. (See Chapter 9 for a discussion of financing for assistive technologies under Medicare, Medicaid, private health plans, and other programs.) In some situations, health plans may pay for a more expensive assistive technology when a less expensive mainstream technology would serve as well.³

For children, assistive devices include adapted or specially designed toys that not only are entertaining and usable but that also make a contribution to their physical and emotional development (see, e.g., Robitaille [2001]). Continued implementation of the Individuals with Disabilities Education Act has focused attention on a range of educational assistive technologies for children with learning and other disabilities (see Chapters 4 and 9). Some of these technologies may also benefit adults with learning or cognitive limitations, increasing their ability to live independently, work, and otherwise participate more fully in community life.

Examples of cognitive assistive technologies include visual or auditory prompting devices that provide simple cues to help people perform a task (e.g., prepare food) or remember things that they need to do (e.g., take medications). Other examples include alarm devices that help warn caregivers that someone with dementia or some other cognitive condition may be in danger, tracking devices that use Global Positioning System technology to determine the location of an individual, and simplified versions of e-mail.

In addition, although they may be financially out of reach for many potential beneficiaries, a range of new assistive technologies are being developed to take advantage of advances in electronics and computing power that have stimulated innovation throughout the economy. Examples of these technologies include communications devices based on the tracking of individual eye movement (e.g., for people with severe speech and movement impairments because of a stroke), complex prosthetic devices that respond to neural impulses, and stair-climbing wheelchairs. As with all technologies, individual and environmental circumstances will influence the usefulness and the availability of specific technologies.

Mainstream Technology and Universal Design Defined

The term mainstream technology has no statutory definition or precise technical meaning. As the term is used here, it refers to any technology that is intended for general use rather than for use entirely or primarily by people with disabilities. The setting in which a technology is used may determine the classification of a technology. For example, a handrail in a place where one is normally found (e.g., beside steps in a school building) would be mainstream device, whereas a handrail installed along the hallway in the home of someone with mobility limitations would be an assistive device and an environmental modification.

Mainstream technologies include such disparate items as pens and pencils, personal computers, kitchen gadgets and appliances, cash machines, automobiles, cell phones, alarm clocks, trains, microwave ovens, and elevators. Some mainstream products, for example, Velcro, were not developed for people with disabilities but have come to have a variety of assistive uses. In some cases, the inclusion of accessibility features in general use products is required under Section 508 of the Rehabilitation Act or other legislation, as described below.

Universal design is the process of designing environments, services, and products to be usable, insofar as possible and practical, by people with a wide range of abilities without the need for special adaptation.⁴ Other common terms for this process are “design for all,” “inclusive design,” and “accessible design.”⁵ Although “accessible design” might be considered a more inclusive term that encompasses mainstream products or environments with certain adaptations (e.g., wheelchair ramps), the term is often used interchangeably with universal design.

Among the most widely known examples of accessible mainstream products cited by proponents of universal or accessible design is a popular brand of kitchen tools and other gadgets that were designed from the start both to be attractive and generally useful and to be easily used by people with limited hand strength or dexterity (Mueller, 2000). In some cases, accessible design may mean the creation of a product or a building that is compatible with assistive technologies (e.g., wide doorways or ramps that accommodate wheelchairs) or that can be easily adjusted for different user characteristics. (See Box 6-1 in the preceding chapter for a list of selected universal design features for health care facilities.)

Another path to safer and more useful products is human factors engineering, which considers how people use products and how human capacities and expectations interact with the characteristics of products in different environments. As is also true of universal design, one focus of human factors engineering is the design of products and processes to reduce the opportunity for human error.

Human factors engineering often does not consider the capacities of people with visual, hearing, mobility, or other impairments. Nonetheless, its principles and methods can be applied to the design of mainstream and assistive technologies to take into account how people with different kinds of impairments interact with such technologies. Unfortunately, Wiklund (2007) concludes that although the application of human factors standards appears to have made some medical equipment more accessible, “a disturbing proportion of new devices still have significant shortcomings” (p. 273).

A recent edited work on accessible medical instrumentation proposed a number of design principles to improve accessibility and safety for a wide range of equipment users, including health care professionals as well as consumers and informal caregivers (Winters and Story, 2007a).⁶ Desirable product features include easily located device controls with “on” and “stop” buttons that have common, distinctive designs and colors.

It must be kept in mind, however, that universal design is a process and not an outcome. In practice, a product or environment that can be used without adaptation by people with every possible kind of physical or mental impairment will rarely if ever be possible. Nevertheless, the process of universal design can significantly extend the range of users for many products and environments. It can also make the use of adaptive assistive technologies much simpler and less obtrusive. A web page designed so that it can easily be used with computer screen readers is an example.

Box 7-1 lists widely cited principles of universal design that may be applied to the planning of products, services, buildings, and environments such as parks and pedestrian spaces. (Story et al. [2003] have prepared a set of performance measures that can be used to assess how well products meet these principles.) Most of these principles are also useful reference points for those designing an assistive device, for example, to make its use simple and intuitive, to limit the physical effort required to use it, and to minimize the opportunity for error or unsafe use. Another principle that appears to guide much accessible design relates to style or attractiveness, that is, giving products pleasing designs that do not invite stigma.

BOX 7-1

Principles of Universal Design. Equitable use. The design is useful and marketable to people with diverse abilities. Flexibility in use. The design accommodates a wide range of individual preferences and abilities. (more...)

In general, the broader the application of universal design principles to products, services, and environments is, the less the need for assistive or adaptive technologies will be. For public technologies, such as voting machines or buses, accessible design is the only method that works, because individuals cannot purchase or choose accessible versions of these kinds of devices on their own.

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KEY POLICIES THAT PROMOTE ASSISTIVE TECHNOLOGY AND UNIVERSAL DESIGN OF MAINSTREAM TECHNOLOGIES

Both before and since the publication of the 1991 and 1997 IOM reports, the U.S. Congress has taken steps to promote assistive and accessible technologies for people with disabilities. Some policies—notably, the Assistive Technology Act—aim to make different kinds of technologies more available, more useful, and more affordable. Other policies, such as coverage provisions of health insurance programs such as Medicare and Medicaid, do not focus on assistive technology as such but significantly affect access to it (see Chapter 9).

Section 508 of the Rehabilitation Act

In 1986, responding to the proliferation of copiers, computers, and other electronic and information technologies, the U.S. Congress added the Electronic Equipment Accessibility amendment to the Rehabilitation Act of 1973 (U.S. Department of Justice, 2000b). The amendment directed the General Services Administration and the National Institute on Disability and Rehabilitation Research (NIDRR) to develop guidelines for federal agency procurement of accessible electronic equipment. As described in Appendix F, the Congress responded to lax enforcement of the 1986 provisions with the Workforce Investment Act of 1998.

The 1998 legislation requires the electronic and information technologies acquired by federal agencies to be accessible to federal workers and members of the public with disabilities and to do so on the basis of standards developed by the Architectural and Transportation Barriers Compliance Board (known as the Access Board; see the description of the board in Chapter 6). The standards, which were issued in December 2001, establish technical criteria for making electronic technology accessible to people with sensory and mobility limitations. They cover telephones and other telecommunications, computers, software applications, video and multimedia products and applications, World Wide Web-based intranet and Internet information and applications, information kiosks, and office equipment such as copiers and fax machines.⁷

As described by the U.S. Department of Justice, the standards “cannot—and do not pretend to—ensure that all [electronic and information technology] will be universally accessible to all people with disabilities” (U.S. Department of Justice, 2000b, unpaged). Reasonable accommoda tions will still be necessary in some situations, but more attentiveness to accessibility will limit the need for accommodations.

Under Section 508, the U.S. Department of Justice is supposed to oversee federal agencies in conducting evaluations of their activities to assess the extent to which their electronic and information technologies are accessible to people with disabilities. The agency published its last such evaluation in 2000 (U.S. Department of Justice, 2000b). That report noted that Section 508 is “technology centered” and focuses on whether mainstream products meet regulations, whereas other provisions of the Rehabilitation Act (Sections 501 and 504) are “person centered” and focus on accommodations related to individual needs.

The National Council on Disability has recommended extending the provisions of Section 508 so that organizations receiving federal funds would be “prohibited from utilizing federal dollars to develop or procure technology that is inaccessible” (NCD, 2000b npaged). The council criticizes, in particular, the One-Stop employment centers (funded under the Workforce Investment Act) for not reliably providing or employing accessible information and telecommunications services. In addition, the council suggests that federal and state officials involved in acquiring electronic and information technology need more training in the evaluation of products for accessibility. This committee agrees that these enhancements to Section 508 would contribute to the expansion of accessible electronic and information technologies.

Assistive Technology Act of 1998

The Assistive Technology Act of 1998, which replaced a 1988 law and which was reauthorized in 2004 to continue through 2010, is the legislation most directly supportive of assistive technology. It authorizes federal support to states to promote access to assistive technology for individuals with disabilities. For fiscal year (FY) 2006, the U.S. Congress appropriated $26 million for the program. At this level of federal spending, most state programs are funded at levels below the $410,000 minimum grant award specified in the law (ATAP, 2006). Overall, the level of funding is quite low.

The 2004 reauthorization shifted the focus of the policy from infrastructure development to direct support for technology access by people with disabilities through financing assistance (loans), device exchange or reuse, and device loan programs. Funds can also be used for training, public awareness, and other programs. Programs cannot pay directly for devices for individuals.

Other Policies

In addition to the Rehabilitation Act and the Assistive Technology Act, a number of other policies affect the availability of assistive and accessible technologies. As described in more detail in Appendix F, these include policies on the compatibility of telecommunications equipment with hearing aids and the captioning of television programs. For example, the Telecommunications Act of 1996 requires that new video programming, including cable as well as broadcast television, provide closed captions that make programs accessible to people with hearing loss.

Although it does not fund the development of assistive technologies and implementation has been disappointing in many areas (see Appendixes D and E), the ADA potentially creates demand for certain assistive and accessible technologies as public and private organizations remove environmental barriers, as required by the law. For example, workplace accommodations may involve the purchase or rental of a variety of aids that allow the use of computers and other electronic equipment.

As mentioned earlier in this chapter, education policies and health care financing programs—notably, the Individuals with Disabilities Education Act, Medicare, and Medicaid—also affect access to assistive technology. In addition, the New Freedom Initiative, which was announced in a 2001 Executive Order proposed a number of steps to remove barriers to equal participation in society by people with disabilities (Executive Order 13217).⁸

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EXTENT OF ASSISTIVE TECHNOLOGY USE

Assistive technologies have been developed to meet a wide range of needs. A database (ABLEDATA) developed by NIDRR includes information on more than 21,000 currently available assistive devices, up from about 6,000 devices listed in the early 1980s (OTA, 1985; ABLEDATA, 2006).⁹ The database also includes some useful items that were not designed as assistive devices.¹⁰ In addition, the database provides links to organizations that offer services or assistance, companies, publications, conferences, and consumer reviews of products. (The database service does not itself sell products.) According to a report by the U.S. Commerce Department, worldwide sales of American assistive technology products and services exceeded $2.85 billion in 1999 (Baker et al., 2003).

In a review of data from six national population surveys, Cornman and colleagues (2005) estimated that 14 to 18 percent of people age 65 and over used assistive technology. The authors noted that such surveys may underestimate assistive device use if they restrict questions about such use to people who have already reported that they have difficulty with daily activities and, thereby, exclude respondents who report device use but no difficulty. People may, for example, use a device but report no difficulty because the device is so successful and so familiar to them that they do not think of their underlying impairment when responding to survey questions.

Not surprisingly, when questions are limited to people with disabilities rather than the general population, surveys show much higher levels of assistive device use. A Kaiser Family Foundation survey found that 45 percent of nonelderly adults who reported having a physical disability said that they relied on equipment to help them with basic needs at home or work (Hanson et al., 2003).

A 2001 University of Michigan survey sponsored by NIDRR also focused on people with disabilities (Carlson and Ehrlich, 2005). On the basis of the survey responses, the researchers coded 75 different types of assistive devices. The four most commonly used technologies were canes or walking sticks, wheelchairs, hearing aids, and walkers. Other commonly used devices were scooters (often those provided at grocery and other stores rather than personally owned equipment), back braces, oxygen tanks, and crutches. Other surveys also find that mobility devices are the most common type of assistive equipment reported to be used (see, e.g., Russell et al. [1997] and Cornman et al. [2005]).

The University of Michigan survey found that 64 percent of the respondents used some form of assistive technology (Carlson and Berland, 2002; Carlson and Ehrlich, 2005). More than 85 percent reported the need for equipment or personal assistance, or both. Respondents under age 40 were more likely than older respondents to report that they have unmet needs for assistive technology. People with unmet needs were also more likely to be nonwhite, to have low levels of education and personal and family income, and to not be working. The majority of respondents reported that they had received little or no information about assistive technologies or about where to obtain them. They also thought that public awareness of the need for these technologies had increased in the preceding decade. The great majority (approximately 90 percent) agreed that changes in laws or program policies in the previous decade had helped people with disabilities get access to assistive technologies. As reported below, the survey asked respondents some questions about their use of other technologies and environmental access features.

Other surveys have also identified unmet needs for assistive technologies. For example, in a national survey of people with a spinal cord injury, multiple sclerosis, or cerebral palsy, Bingham and Beatty (2003) found that half of those surveyed reported that they needed assistive technology during the preceding year and that one-third of this group did not receive it every time that it was needed.

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OUTCOMES OF ASSISTIVE TECHNOLOGY USE

Today, AT [assistive technology] provides alternate ways of providing transportation for those who cannot walk, communicating for those who cannot speak, reading for those who cannot see or read print, using the telephone for those who cannot hear and remembering for those who forget.

NTFTD (2004)

Assistive technologies may meet the needs of users in different ways. They may allow people to do something that they could not do before (e.g., use a computer or drive a car) or to do it more safely, more easily, or more independently. The ability to perform a discrete task, such as using an appliance, driving a car, or putting on socks, may translate directly or indirectly into better general functioning in daily life (e.g., getting dressed and preparing meals); more independence (e.g., traveling outside the home); or improved abilities to perform social roles, such as attending school, working, or taking care of one’s children. These outcomes may, in turn, translate into a better quality of life. They may also reduce demands on family or paid caregivers.

In general, the usefulness of an assistive technology will depend on interactions involving several factors (see, e.g., Batavia and Hammer [1990], Thorkildsen [1994], and Scherer [2005]). These factors include

· characteristics of the individual user, such as a person’s particular impairment, income, education level, and adherence to therapy regimens, as well as his or her preferences and goals;

· characteristics of the technology itself, including ease of use (with respect to both physical and cognitive demands), ease of maintenance, need for training in use, reliability, safety, durability, portability, cost, and obtrusiveness; and

· environmental circumstances, including characteristics of an individual’s home or workplace, family relationships, social attitudes, the knowledge and attentiveness of health care professionals, and supportive public policies.

In various ways that reflect their personal characteristics and environments, users (and those who advise them) balance the various pluses and minuses of specific devices or categories of devices. This balance helps determine what devices they will seek to use, what they will actually use (once a device is obtained), and when they will consider using a new device.

Despite the increasing use of assistive technologies and the creation of a number of federal programs to promote the development and availability of these technologies, the amount of information on the effectiveness of these technologies in improving function and, in particular, increasing independence and community participation appears to be relatively sparse across the range of available technologies and users (AAPM&R/The Foundation for PM&R, 2003; Carlson and Ehrlich, 2005).¹¹ As discussed in Chapter 10, government funding for disability-related research is, in general, very small in relation to the personal and societal impact of disability. More research to assess the effectiveness of existing and emerging technologies is important to guide consumer, clinician, and health plan decision making. The development of health outcomes measures as part of the National Institutes of Health’s Patient-Reported Outcomes Measurement Information System (PROMIS) initiative (see Chapter 10) should improve the use of such measures in clinical studies, including studies that evaluate assistive technologies.

Some privately funded research is undertaken to support approval by the U.S. Food and Drug Administration (FDA) for certain complex devices. FDA makes the submission of clinical data demonstrating safety or efficacy in humans a condition of approval for only a small percentage of medical devices (FDA, 1999; IOM, 2005b).¹² Manufacturers must supply FDA with nonclinical safety and other technical data for a larger group of devices; and they must register a very much larger group of relatively simple devices, such as manual wheelchairs, canes, and braces. FDA also regulates the claims that manufacturers may make about devices. For example, in 1993, the agency warned hearing aid manufacturers to stop making misleading claims and to supply clinical data to justify certain claims (FDA, 1993).

Since publication of the 1991 IOM report, researchers have continued to work on outcome assessment tools that are suitable for testing the effects of technology use on different dimensions of functioning and disability.¹³ NIDRR has funded research centers and projects to improve the measurement of outcomes from the use of assistive technologies and to promote the use of valid measures (NARIC, 2006a). It has also supported assessments of specific assistive technologies and funded several engineering research centers that focus on various types of technologies or technology needs (see Box 7-2 later in this chapter). Many of these activities involve other agencies, including the U.S. Department of Veterans Affairs and the National Center for Medical Rehabilitation Research. These agencies and a number of others also independently fund evaluations of technologies.

BOX 7-2

Focus of NIDRR-Supported Rehabilitation Engineering Research Centers. Condition, impairment, or group characteristic Spinal cord injuries

The committee identified a few controlled studies that compared assistive technologies or that compared the use of an assistive technology with no use. For example, several studies have compared hearing aids and other devices used to enhance hearing (see, e.g., Cohen et al. [2004], Mo et al. [2004], and Morera et al. [2005]). A number of studies have also focused on different features of wheelchairs or other aspects of wheelchair use (see, e.g., Cooper et al. [2002], Fitzgerald et al. [2003], Levy et al. [2004], Trefler et al. [2004], and Holliday et al. [2005]; see also Consortium for Spinal Cord Medicine [2005a]).¹⁴

Most controlled studies appear to involve technologies related to mobility or sensory impairments, although a number of studies have investigated the use of computer-based and other assistive technologies for children and adults with learning or cognitive disabilities. Controlled studies of equipment typically cannot use “blinding” strategies that limit researcher or participant awareness of which group is receiving a test product. For equipment essential to basic functioning (e.g., mobility equipment), the use of a no-treatment or placebo control group might be unethical.

Studies of outcomes may include functional assessments, but most research relies on self-reports of satisfaction or usefulness rather than direct assessments of functional outcomes. In the University of Michigan survey cited earlier, more than 90 percent of respondents reported being satisfied or very satisfied with their assistive technology (Carlson and Ehrlich, 2005). Approximately half reported that assistive technology reduced their need for personal assistance somewhat or a lot; less than 30 percent said that it had no effect. In addition, the majority of respondents reported that universally designed products, better-designed products, or environmental access features reduced their need for assistive technology and services a lot or some. Only about one-quarter reported no effect. Other mostly small, mostly European studies of several kinds of assistive technologies have also found that the majority of users report positive experiences (see, e.g., Sonn et al. [1996], Hammel et al. [2002], Roelands et al. [2002], Thyberg et al. [2004], and Veehof et al. [2006]).

Several population-based studies suggest that assistive technologies may substitute for or supplement personal care (Manton et al., 1993; Agree, 1999; Agree and Freedman, 2000; Allen, 2001; Hoenig et al., 2003; Agree et al., 2005). Some of this research suggests more specifically that the use of simple devices may substitute for informal care, whereas the use of complex devices may supplement the use of formal or paid care (Agree and Freedman, 2000; Allen, 2001; Agree et al., 2005). As might be expected, those whose difficulties are not resolved by the use of a technology are more likely than others to use personal assistance (Taylor and Hoenig, 2004). Using responses from the 1994–1995 National Health Interview Survey, Verbrugge and Sevak (2002) concluded that “controlling for factors that route people to different types of assistance, equipment is more efficacious than personal assistance” (p. S366). They also noted that their conclusions needed to be tested with longitudinal studies.

At least one controlled trial (Mann et al., 1999) found cost savings with the substitution of assistive technology for some personal care.¹⁵ Using a variety of outcome measurement tools, the investigators also found that the group that used the technology experienced slower rates of functional decline and less pain than the control group.¹⁶

As is evident from this discussion, the availability of assistive and accessible mainstream technologies may have consequences that reach beyond individual users to affect formal and informal caregivers, including family members. Family member caregivers may, for example, find that a new assistive technology reduces physical and emotional stress. In some cases, it may reduce the caregiving requirements sufficiently that family members can work outside the home or be more productive in their paid work. Assistive technologies that allow children to perform better at school and adults to work or to work more productively will also likely benefit others, including teachers, employers, and coworkers. Overall, then, the effective use of assistive technologies may benefit society as a whole to the extent that such use reduces dependency and increases productivity (per worker and per member of society). The committee found little empirical research on these kinds of outcomes (however, see, e.g., Pettersson et al. [2005]). Evaluations of outcomes involving family members and others would permit a fuller understanding of the effects of an assistive or accessible technology.

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ENHANCING ACCESSIBILITY THROUGH UNIVERSAL DESIGN OF MAINSTREAM TECHNOLOGIES: PROMISES AND PROBLEMS

When technology and disability are discussed, assistive technologies are usually the first things that come to mind. As emphasized earlier in this chapter, however, people with disabilities encounter and must use—or be disadvantaged by an inability to use—a very wide range of mainstream technologies in their daily lives. Standard alarm clocks, microwaves, ovens, washing machines, thermostats, computers, and a host of other products may not be accessible (either directly or with adaptive technologies). In that case, then, people must do without, accept products with significant shortcomings, or buy special products, often at a higher cost. The nation’s aging population should spur the growth of a market to support—and demand—the development and availability of more accessible mainstream products, although the larger part of this market will be people with milder impairments. Table 7-1 summarizes some key mainstream technologies and the barriers that they can present to people who have various kinds of physical or cognitive impairments.

TABLE 7-1

Examples of Barriers Created by Mainstream Technologies.

With electronic technology being integrated into products and services in education, employment, health care, and many other aspects of daily life, the inability to use these electronic features can itself be disabling. For example, a person with vision loss who could work a traditional stove with knobs that click through the heat settings may not be able to use a replacement that relies entirely on touchpad controls with no audible or tactile cues.

In addition, electronic devices are increasingly replacing human agents for transacting business—whether the business is getting cash, checking out groceries, or purchasing tickets. Often, these devices and their specific features are designed without attention to people with vision, hearing, manual dexterity, or other impairments.

Progress, albeit slow, is being made in some areas to counter some of these barrier-creating developments. For example, in 2004, the Access Board published final guidelines advising that automated teller machine (ATM) instructions and other user information be accessible to people with vision impairments (Access Board, 2004). In the preamble to the guidelines, the Access Board noted that it was not extending the guidelines to other types of interactive transaction machines and that it would monitor application of the existing standards under Section 508 of the Rehabilitation Act for federal agencies purchasing such machines. (These guidelines have not yet been formally adopted as regulations by the U.S. Department of Justice, although a notice of proposed rule making was published in 2005 [Department of Justice, 2005a].)

Although ATMs were mentioned explicitly in the ADA, the Internet was a thing of the future in 1990, when the ADA legislation was passed. Now, the Internet is becoming the primary or least expensive place to obtain certain types of goods, particularly specialty items that may not be available in many smaller communities. If computer technologies in general and websites in particular are not accessible, people with disabilities may face serious limits in their ability to find and purchase these less common products, including certain assistive technologies.

The accessibility of computers generally and the Internet specifically is a particular concern of many policy makers, consumer advocates, researchers, and software and hardware producers (see, e.g., Novak [2001], Kirkpatrick et al. [2006], and W3C [2006]; see also Appendix F to this report). A report from the U.S. Department of Commerce, which used data from the September 2001 supplement to the Current Population Survey, reported that “with the exception of those individuals with severe hearing impairment, those who have [one of several categories of] disabilities are less likely than those without a disability to live in a home with a personal computer. And even in homes with a computer, people who have at least one of these disabilities are less likely to use the computer or the Internet” (NTIA/ESA, 2002, unpaged). Some access problems may relate to the economic disadvantages of people with disabilities and their lack of financial resources to buy a computer or Internet access. Inadequate design remains a factor, particularly for people with visual impairments who may find, for example, that web pages are not compatible with computer screen readers.

Sometimes designing mainstream devices so that they are compatible with an assistive technology—as is done by designing computer screen readers—is the only practical strategy for achieving access. Often, however, the most economical and effective approach is to have the mainstream device designed so that no additional adaptive equipment is needed, as happens when buildings are designed without steps or when elevators “announce” their arrival and their stop status.

Although the desirability of having mainstream products accessible to a wide range of individuals is clear, product research and development incentives in this area follow the same principles identified below for assistive technologies. Unless there is the prospect of a market and significant additional revenues, companies have little motivation—other than the need to comply with regulations—to include any particular accessibility features in a product. Regulatory approaches do not, however, work well if enforcement is lax or if the perceived real or opportunity costs of complying are higher than the costs (e.g., fines) of not complying.

Even accessibility features that are known or expected to increase revenues must compete with other features for engineering and marketing time. If another feature appears to have a significantly greater profit potential, then the accessibility feature is likely to get a lower priority (Tobias and Vanderheiden, 1998; Vanderheiden and Tobias, 2000). As a result, access features may sit fairly near the top of a list of proposed features for a product and yet never make it into new releases of the product.

As discussed earlier, the U.S. Congress has adopted policies to require accessibility for certain services or products, primarily in the area of telecommunications. One significant challenge to policy makers and regulators is keeping up with technological advances. An example is the development of wireless and Internet-based telephone services (see Appendix F).

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CHALLENGES TO DEVELOPMENT AND EFFECTIVE PROVISION AND USE OF ASSISTIVE TECHNOLOGIES

As illustrated in the discussion to this point, assistive technologies constitute a quite broad and varied array of products that are directed toward a very diverse population of device users. Encouraging private firms and individuals to imagine, develop, and produce useful technologies presents many challenges and obstacles. Even when a good product is available, a number of barriers—such as a lack of consumer awareness of technologies and a lack of financial access—may lie in the path that leads to its successful, continued use by people with disabilities.

Viewed broadly, the process of creating, providing, and supporting technologies for use by people with disabilities has several stages. They stretch from the earliest glimmerings of a product or process idea through the end of a product’s useful life or its replacement by an improved product. These stages, which also characterize many—if not most—mainstream consumer products, include

· product research and development;

· commercial application and production;

· consumer and professional awareness;

· guidance and product selection;

· financial access to equipment and related services;

· personal adaptation, training, and use; and

· product maintenance, repair, and replacement.

The characteristics of these stages vary considerably for different kinds of products and companies. Some products, such as advanced prosthetic limbs, may be characterized by complexity at every stage, requiring substantial investment in applied research and commercial development as well as major financial, technical, and other support for users. After their initial conceptualization and development, other products, such as the shower chair or the button hook, may see little continued innovation, minimal user training (even when advice about the product’s safe use might be advisable), and a limited risk of obsolescence, even though competitive products may emerge (e.g., Velcro and other fastening options for clothing). Lack of consumer awareness may be the biggest challenge for such established products.

Nonetheless, even for relatively simple devices, human factors engineers and others may see ways to improve the safety and functionality of the devices, for example, by changing the dimensions or the shape so that a device is more easily gripped or manipulated. As the next section describes, that a device can be improved does not necessarily mean that a manufacturer will be motivated to invest in bringing the improved device to market, particularly if the likelihood of a reasonable return on its investment appears to be low.

Many of the challenges or problems reviewed below relate to weaknesses in the market for assistive technologies, including prescribed medical devices of various sorts. On the demand side of the market, sales may be limited by the small numbers of prospective purchasers for many products, the lower-than-average incomes of many people with disabilities (see Chapter 3), and health plan coverage of assistive technologies that is more restrictive than coverage of medical and surgical services (see Chapter 9). In addition, consumers, their families, and the health care professionals who advise them may not even be aware of relevant product options or may find them difficult to evaluate. On the supply side, innovators and entrepreneurs may, depending on the product, face high capitalization costs for manufacturing facilities and distribution networks, as well as significant research and development costs, particularly if the product requires the submission of data on safety and efficacy to the FDA. In comparison to the pharmaceutical industry, the medical device industry is characterized by a greater presence of small firms, a lesser reliance on patents as a source of competitive advantage, and a more continuous process of product refinement and innovation (Gelijns et al., 2005).

The following discussion first examines the stages of research, development, and commercial application for assistive technologies. It then considers the use of technologies by consumers.

Product Research and Development

It’s mind boggling when you think of the things [assistive technologies] they’re coming up with. What higher-level quads like me couldn’t do before, we can do now. What a big incentive to keep going. There are so many advantages … I mean I’m glad I broke my neck in this century.

Brian, as quoted by Scherer (2005)

This enthusiastic, if somewhat startling, view of what technology can do to increase functioning and independence for people with disabilities was offered not in 2005 but in 1986. By that time, innovations in materials and in electronic and computer technologies had brought significant improvements in technologies for people with spinal cord injuries and other mobility-limiting conditions. The next two decades have seen many further technological advances and benefits, including lighter and more effectively controlled wheelchairs and prosthetic limbs and better knowledge of how to fit and maintain such devices to minimize the development of pressure ulcers and other secondary health conditions.

A number of analyses have, however, identified an array of obstacles to technological development and innovation in assistive technologies (see, e.g., IOM [1997], NCD [2000b, 2004a, 2006] and Baker et al. [2003]). Most relate to the relatively small market for many products, but product affordability is also an issue. Obstacles may also include a continuing legacy of discrimination and inattention to people with disabilities in medical research and engineering (Seelman, 2007).

Role of the Private Sector in Research and Development

In the private sector, the development and production of assistive technologies involve a diverse population of organizations (Baker et al., 2003). These organizations range from relatively large companies that produce wheelchairs or hearing devices to niche firms that produce products for small and dispersed populations (e.g., adults and children who are both blind and deaf).¹⁷ In addition, the assistive technology industry includes individual professionals who custom produce items such as adapted vans, braces, and orthotics. In general, small firms play a much bigger role in the medical device and assistive technology sector than they do in the pharmaceutical sector.

For products for which the potential for profit is good, private companies will typically take the lead in product research and development and continuing improvement. For many assistive products, however, the potential for sales and profits will appear low. For example, among people who could potentially benefit from electronic augmented communications devices, the range of abilities and communications needs is quite varied. Thus actual core technologies may likewise be quite varied. For example, several device control options are available (keyboard, infrared head pointer, hand gestures) (see, e.g., Bauer [2003]). As a result, the market for the general product category is quite fragmented, which tends to increase costs and limit profit potential.

Restrictive insurance coverage exacerbates the disincentive for product development for these and other product categories (see Chapter 9). For example, in a controversial and disappointing decision, the Centers for Medicare and Medicaid Services has determined that the iBOT (described earlier in ^footnote
12) meets the definition of durable medical equipment and qualifies as reasonable and necessary for people with certain mobility limitations; but it further determined that several integrated functions of the device, such as those that allow it to climb stairs, do not offer clinically significant benefits (CMS, 2006d). The agency also declined to create a new coverage category for the device, which critics argue effectively denies coverage since Medicare covers only the least costly device in a category, which in this case is the category for a standard power wheelchair (see the critique from the ITEM Coalition [2006]). (The iBOT sells for more than $25,000, and the company sold approximately 1,000 of the devices in its first 3 years on the market [Young, 2006].)

A 2003 report by the U.S. Department of Commerce cited a number of difficulties facing the assistive technology industry. They include “the prevalence of small firms [who lack resources for sophisticated product de velopment] … ; problems in hiring and retaining a trained workforce; … and the disconnect between … industry and the resources of the federal laboratory system” (Baker et al., 2003, unpaged). The report cited survey data indicating that research and development was a significant activity for less than half of the firms surveyed, and only 15 percent of the firms surveyed cited activity in basic research.

The 1997 IOM report Enabling America suggested that the situation for assistive technologies is similar to that for so-called orphan drugs for people with rare medical conditions.¹⁸ Unfortunately, it has proved difficult for the U.S. Congress to identify incentives for the development of medical equipment for small user populations similar to those identified for the development of orphan drugs (IOM, 2005b). In language accompanying the 2002 appropriation for the U.S. Department of Education and other agencies, the Senate Committee on Appropriations stated that “priority for grants [under the Assistive Technology Development Fund] should be given to the development of technology that has a limited number of users, or orphan technology” (U.S. Senate, Committee on Appropriations, 2001).

Role of Government in Research and Development

If private industry finds investment in product development activity in a particular area unattractive, the primary alternative is government-supported research and development or, occasionally, research supported by private foundations. As described in Chapter 10, government investment in disability and rehabilitation research of all kinds—including most kinds of product innovation and development—is limited relative to the population that could benefit. One exception is investment in prosthetic research, which has received substantial support from the U.S. Department of Veterans Affairs and the U.S. Department of Defense and which has become a particular focus with the return of military personnel who have lost limbs in Iraq or Afghanistan (Perlin, 2006; see also Chapter 10).

NIDRR funds a number of Rehabilitation Engineering Research Centers that conduct research and development related to specific populations, technologies, or strategic issues (Box 7-2).¹⁹ The centers may work on accessible mainstream technologies (e.g., household products and computers) as well as assistive technologies. Some centers focus on conditions (e.g., spinal cord injuries), some focus on technologies (e.g., wheelchairs), and some focus on environments (e.g., workplaces). Intensive consideration of assistive technologies in different environments may bring new and useful perspectives on environmental barriers to work and social life and on engineering strategies for removing or mitigating these barriers.

Total funding for the centers program was relatively steady at about $11 million in the late 1990s, but in FY 2000, the funding increased to more than $15 million and increased again in FY 2001 to more than $20 million as additional centers were funded (Arthur Sherwood, Science and Technology Advisor, NIDRR, personal communication, November 16, 2006). It has declined slightly since then. The funding for each center is modest, however, averaging less than $1 million per center per year.

Government support for research is not restricted to government and academic researchers. The U.S. Congress has specified that a portion of certain government agency budgets for assistive technology, science, or engineering research be allocated to support technological innovation in the small business community and to encourage commercial applications of technologies developed through government-supported research (SBA, 2001).

Involvement of Consumers at the Research and Development Stage

Although discussions of research and development focus on the roles of public- and private-sector organizations and funding, the development of a successful product—one that works and that is commercially feasible—often depends on consumer involvement, for example, through focus groups and evaluation of prototypes (see, e.g., Lane [1998] and Scherer [2005]). The 1997 IOM report Enabling America called for consumers with potentially disabling conditions to be involved in research and technology development and dissemination.

For certain products, the ability of companies to assess market demand and profit potential may be restricted by the limited market data on people with disabilities, including their numbers, their perceived needs and preferences for assistive and accessible products or services, and other characteristics. A recent national task force report recommended—and this committee endorses—government support for surveys and market research to help reduce the knowledge gap (NTFTD, 2004).

In some cases, companies could also benefit from information on the broader market, for example, how people without mobility or sensory limitations view various accessibility features for mainstream products. Even with a rapidly growing older population, companies may be concerned that people may avoid products that suggest disability, and firms may be unaware of universal design principles that include the attractiveness of a product to a broad range of users (Vanderheiden and Tobias, 2000).

A rather different way of involving consumers has to do with the development of technical standards that are appropriate for different populations. As noted in Chapter 6, the U.S. Department of Veterans Affairs—citing the average age of its population—has developed standards for its facilities that differ somewhat from the standards developed by the Access Board. Many of the data on human performance standards and guidelines were derived from studies that relied heavily on young male participants (Gardner-Bonneau, 2007). If the average user of, for example, home medical equipment is an older woman with mobility or sensory limitations, or both, then the development of equipment using standards derived from data based on a population that is quite different is not appropriate. Data on older populations and children are available but are not necessarily widely known. Designers and standard setters are, however, beginning to take note, as evidenced by the publication by the Access Board of ADA building accessibility guidelines relevant for children (Access Board, 1998; see also ISO [2001], Fisk et al. [2004], and Kroemer [2006]). (The U.S. Department of Justice has not yet adopted these guidelines as standards.)

Challenge of Technology Transfer and Commercial Application

A good product idea, design, or prototype is of little value to consumers if it does not lead to commercial production and distribution. Even when the federal government supports research and development in the area of assistive and accessible products, this support may not extend far enough into the next stage, that is, technology transfer for the purposes of commercial application (Wessner, 2006). One definition of technology transfer is the “process of converting scientific findings from [government or academic] research laboratories into useful products by the commercial sector” (NLM, 2006, unpaged). One of the recommendations (Recommendation 8.1) in the 1997 IOM report Enabling America implicitly defined technology transfer more broadly to include what this report characterizes as steps to increase consumer and professional awareness of the available technologies.

The gap between long-term, government-supported basic research and short-term product development by industry has been characterized as the “valley of death” (see, e.g., Fong [2001]). For example, in 1998, a congressional committee used that term to label a “widening gap between federally funded basic research and industry-funded applied research and development” (U.S. House of Representatives, Committee on Science, 1998, unpaged).

The U.S. Congress and federal agencies have taken some steps to promote and monitor technology transfer from government research agencies to the private sector through research and development partnerships; the implementation of patenting, information disclosure, and licensing procedures; the provision of technical assistance; standards development; and other means (see, e.g., U.S. Department of Commerce [2006]). Unfortunately, the effectiveness of these steps in the area of assistive technology has been limited by the industry and market characteristics described above (Bauer, 2003). To encourage technology transfer, each of the previously mentioned Rehabilitation Engineering Research Centers is expected to pro duce some transfer of technology to the private sector. NIDRR has also funded a center (at the State University of New York at Buffalo) specifically to promote transfer for assistive technologies.

Even with government support for product development and applied research, product developers, governmental agencies, and advocates may have to invest considerable effort to identify and attract a private company that is prepared to manufacture and market a product. In the U.S. Department of Commerce survey cited earlier, almost two-thirds of the companies surveyed indicated that they were “passive in their pursuit of new ideas—or not interested at all” (Baker et al., 2003, unpaged). More positively, almost 60 percent said that they would be interested in working with government research and development agencies, although their lack of knowledge of these agencies and their procedures may impede collaboration.

Awareness, Adoption, and Maintenance of Available Technologies

Consumer Awareness

When suitable assistive or accessible products are commercially available, other barriers may still stand in the way of their effective use. At the most basic level, people with disabilities (and their family members) may not be aware of the availability of useful products. In addition, particularly in the case of older people who have gradually developed functional limitations, people may not recognize that they could benefit from assistance (Gitlin, 1995; NTFTD, 2004; Carlson et al., 2005). Also, people who acquire disabilities later in life and who have trouble accepting their situation may see some assistive technologies as stigmatizing, which points to an advantage of accessible mainstream products (NTFTD, 2004). As Caust and Davis (2006, unpaged) have observed, “[p]eople want to believe they are competent and capable and they are happy to ignore the safety risks associated with not using assistive technology, for the sake of appearing competent.”

The University of Michigan survey of people with disabilities discussed earlier in this chapter reported that roughly half of the respondents reported that they had received little or no information about assistive technologies. This finding suggests that the needs for information about assistive technologies are going unmet. Among the respondents who did obtain information, about half mentioned health care professionals (e.g., occupational or physical therapists) as the source (Ehrlich et al., 2003). (Many of the technologies reported by respondents, e.g., wheelchairs and hearing aids, require a medical prescription or guidance.) About 15 percent mentioned family and friends as sources of information, and 13 percent mentioned vocational rehabilitation counselors.

At the time of the survey in 2001, less than 10 percent of the respondents mentioned the Internet as a source of information. With the explosion of Internet resources and increased computer use by older individuals and their family networks, the Internet would likely be cited more frequently today. Internet searches may lead people to resources such as ABLEDATA, Technology for Long-Term Care (www.techforltc.org, which was originally funded by the U.S. Department of Health and Human Services), and other information resources developed by governmental agencies, nonprofit organizations, and manufacturers.

Although NIDRR, which administers the Assistive Technology Act of 1998, supports activities to help increase consumer awareness of useful technologies, the agency’s website is (in the committee’s view) not easy to use as a resource to find information about assistive or accessible technologies. Government and support group websites are especially important resources for developing consumer awareness because company advertising and other promotional activities may be very limited for small markets.²⁰

More can be done to ensure that people with disabilities and their families become aware of and educated about the range of technologies that are available to them to meet many of their specific needs. A national task force recently proposed a broad-ranging public awareness campaign “to communicate the existence and benefits of [assistive and accessible technologies], provide mechanisms for consumers to find accessibility features in [other] products, and showcase best practices” in universal design (NTFTD, 2004, p. 43). The committee offers a similar recommendation below.

In addition, further investigation of the extent and quality of Internet and other information resources (including support group and industry websites) would be helpful in developing strategies to improve the availability, reliability, and usefulness of the information available online. To the extent that the Internet is the focus of public education and information programs, it is important that policy makers and advocates be alert to gaps in Internet access and use among low-income and other consumers and that they investigate additional strategies that can be used to reach these groups.

Guidance for Health Professionals

The move from awareness to the acquisition and application of a technology may be as simple as going to a store, buying a new household gadget, and using it, possibly without the need for even simple instructions (e.g., as with an accessibly designed utensil that replaces a similar but less user-friendly device). In the case of advanced prosthetic devices and other technologies, the process may be complex, involving the expertise and guidance of highly trained medical and other specialists in the selection and individual fitting of equipment, the training of the consumer in its safe and effective use and ongoing maintenance, and periodic reevaluation of equipment performance and use.

Physicians who specialize in care for people with particular disabilities may be aware of products that require medical assessment and prescription, but they may not always be well informed about household and other products that could benefit their patients. For both simpler and more complex technologies, physicians and other health care professionals should be alert to their patients’ ability to benefit from assistive technologies and be prepared to provide guidance and information or to refer them as appropriate to other information sources.

However, even with products requiring medical assessment and prescription, the rapid changes in some kinds of technologies and the introduction or disappearance of products or product models from the market may make it difficult for physicians to track and evaluate specific products. Thus, for example, instead of recommending a particular device, a clinician may determine that a consumer has impaired manual dexterity; evaluate what product features may be relevant, given the individual’s fine motor skills; identify the need for products with features such as large control buttons; and then focus on products with the relevant features. For products that do not require a medical prescription, such as household products, the consumer or a family member may then take the lead in searching for products with the appropriate features.

For some types of assistive technologies, personnel who are trained and knowledgeable about product options and selection may be in short supply, as may be the physical locations where products can be viewed and tried. For example, the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) has stated that there are not enough occupational and physical therapists certified as assistive technology practitioners or certified suppliers with the expertise needed to serve people who need powered mobility devices (RESNA, 2005). Likewise the American Foundation for the Blind has stated that a “critical shortage of professionals who are qualified to provide specialized computer skills training to blind and visually impaired people significantly affects their viability in today’s job market” (AFB, 2001, unpaged). In yet another arena, the National Council on Disability has observed that it means little to recommend that the role of assistive technologies be considered more fully in the development of individual education plans (under the Individuals with Disabilities Education Act) if no member of the team developing such plans “is familiar with the range of [technologies] available to address desired goals (NCD, 2000b npaged).

Some consumers find information through state programs that have been funded under the Assistive Technology Act to aid consumers in learning about and acquiring technologies. For example, in a report on state activities funded under the Assistive Technology Act, RESNA (2003) found that the 34 states that provided data reported that they supported or operated 109 assistive technology demonstration centers. States also reported providing information to consumers through the Internet, e-mail, regular telephone and text telephone, and regular mail.

Financial Access

Particularly for the more expensive assistive technologies, a lack of financial resources can be a significant barrier to the acquisition of an effective, recommended technology. According to the University of Michigan survey of people with disabilities, the percentage of respondents for whom assistive technologies were paid for through public or private insurance (38 percent) was about equal to those for whom their equipment was paid for personally or through family members (37 percent) (Carlson and Ehrlich, 2005). Six percent received their equipment at no cost to themselves. People with low incomes were far more likely than people with higher incomes to report unmet needs for technology.

About 23 percent of the survey respondents sought help from an agency in selecting or purchasing equipment, and about 19 percent reported receiving help from an agency (Carlson and Ehrlich, 2005). Most people believed that they did not need agency help, but some said that they did not know an agency to contact. This again suggests the need for a more intensive public awareness effort.

As discussed further in Chapter 9, Medicare and private insurance coverage of assistive technologies is limited and often complex. Medicaid programs, for those who qualify, tend to cover a wider range of assistive technologies. This coverage is sometimes provided under waiver programs that do not extend to all parts of a state or to all categories of Medicaid recipients. The rules are often complex for consumers, family members, and even professionals.

One option for improving access to assistive technologies is through innovative practices in leasing or rental arrangements. One example is a leas ing arrangement developed by the Center for Assistive Technology at the University of Pittsburgh Medical Center (UPMC) in conjunction with the UPMC Health Plan, a manufacturer of costly power wheelchairs, and a local network of suppliers (Schmeler et al., 2003). The program is specifically designed to make the equipment quickly available to people with rapidly advancing health conditions (e.g., amyotrophic lateral sclerosis) whose use of the equipment may be limited to a period of months. Rather than the Health Plan purchasing a $25,000 power wheelchair for a consumer, the chair can be leased on a monthly basis for a reasonable fee. The fee includes the provision of all maintenance and upgrades as the person’s condition changes. Once that person no longer uses the equipment, it is recycled and re-leased. With the program, people with these conditions have access to equipment much sooner and the health plan claims significant cost savings. The suppliers and the manufacturer do not consider the program to have interfered with their profit objectives because the equipment can be leased repeatedly over several years.

A particularly weak point in the chain of effective technology use is coverage for maintaining, repairing, and replacing an assistive technology when necessary. Some users may have the knowledge and physical abilities to repair simple products, but expert assistance will often be required, especially for complex and expensive equipment. In addition, when an effective product is prescribed and is then used and wears out, people often find that their insurance does not provide for replacement or does not provide for replacement frequently enough. Chapter 9 recommends revisions in health plan policies to increase access to assistive technologies and support their maintenance, replacement, and repair.

Although the committee did not locate specific documentation, committee members working in rehabilitation reported decreasing numbers of assistive technology clinics and programs within hospitals and reductions in the scope of programs related to reduced rates of reimbursement and other onerous provider payment policies. (See ^footnote
2 in Chapter 9 on the controversy about restrictions on reimbursements to inpatient rehabilitation facilities.) An analysis of the complex issues of payment for rehabilitation services was beyond the committee’s resources. Still, without mechanisms in place to fit equipment and adapt or train individuals in its proper use, even a potentially very effective assistive technology can fail.

Through the Consumer’s Eyes

One challenge for health care professionals, family members, and others who may be involved in discussions of assistive technologies is to consider outcomes “through the consumer’s eyes” (see, e.g., Taugher [2004] and Lilja et al. [2003]). Each of these parties may have priorities different from those of the individual considering or using an assistive technology (Scherer, 2005).²¹

For example, from a user’s perspective, a seemingly inferior device may be more practical to use and maintain, may be less obtrusive in social situations, or may otherwise be more acceptable, and thus more effective than a more sophisticated device. Seigle cites the case of a man who had lost both arms in an accident.

Robotic arms were created and fitted to the man, but because they were heavy and uncomfortable they stayed on the floor of his closet. When the man asked what he most wanted to do on his own, he answered that he just wanted to be able to go out to a restaurant and drink a beverage without someone having to hold the cup…. In this case, the best assistive technology solution was a long straw.

Seigle (2001, unpaged)

In reality, although this anecdote highlights the mismatch between a technology and the user, a better solution for this individual would be prostheses that were lighter, more comfortable, and more functional. As described earlier, prostheses are the focus of considerable advanced research that has been given added impetus because of the wars in Iraq and Afghanistan, although cost will limit access to the more advanced devices for many individuals with limited or no insurance.

Research and experience suggest that consumer involvement in the selection process (rather than an essentially one-sided prescription by a health care professional) helps avoid later rejection or abandonment of the technology (see, e.g., Phillips and Zhao [1993], Gitlin [1995], and Riemer-Reiss and Wacker [2000]). Abandonment or nonuse of a technology, particularly an expensive one, is a costly and wasteful outcome that contributes to policy maker and insurer concerns about the provision of coverage for assistive technologies and to the adoption of restrictive coverage policies and practices. The committee found no evidence, however, that the rate of abandonment of assistive technologies is higher or even equal to the rate at which people fail to complete or maintain complex medication regimens.

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RECOMMENDATIONS

Creating more accessible environments—whether through the provision of better assistive technologies and improved mainstream products or the removal of barriers in buildings and public spaces—is an important avenue to independence and community participation for people with disabilities. This chapter has identified needs in two broad areas: the development of new or improved technologies and the better use of existing technologies. The discussion below sets forth three recommendations related to these needs. Chapters 6 and 9 identify additional steps related to regulatory and financing policies.

Innovation and Technology Transfer

New and more effective assistive technologies are possible. For products with large markets, a good business case for investment in research, development, and production can often be made, although it may still be useful for consumers, policy makers, and others to become more articulate and persuasive in encouraging investment. Unfortunately, many types of assistive technology do not fit this model, and normal market processes fall short in meeting urgent consumer needs.

Tackling this shortfall is, however, complex. Although government efforts to promote assistive technology development and commercial applications do appear to have had positive results, the committee concluded that a more detailed exploration of obstacles, possible incentives, and even mandates would be useful. This exploration could build on the analyses cited in this chapter and other related work. It should involve a broad range of participants and should use subgroups as appropriate to investigate issues related to particular barriers, incentives, or product categories and to identify priorities for new public investments in the development and evaluation of assistive and accessible technologies. As recommended in Chapter 9, it is also important to undertake research to support coverage decisions for assistive technologies based on evidence of effectiveness.

Recommendation 7.1: Federal agencies that support research on assistive technologies should collaborate on a program of research to improve strategies to identify, develop, and bring to market new or better assistive technologies for people with disabilities. Such research should involve consumers, manufacturers, medical and technical experts, and other relevant agencies and stakeholders.

As noted in this chapter, some helpful steps have been taken to increase government support for technology development and transfer. Funding for the Rehabilitation Engineering Research Centers program, for instance, almost doubled between FY 1999 and FY 2001 but has recently dropped back slightly. Additional research by NIDRR, units of the National Institutes of Health, the National Science Foundation, and other relevant agen cies is needed to identify both new technologies and strategies for getting effective products to consumers.

Research into better methods to develop and bring to market effective new technologies needs to extend beyond “high-tech” technologies. Strategies to promote research and commercial development to improve relatively “low-tech” but common equipment, such as walkers, are also important.

Another topic for research is the role of legislation, including existing policies such as the ADA and Section 508 of the Rehabilitation Act, in providing incentives to industry by enlarging the market for accessible technologies. One study that examined patent applications in an attempt to assess the impact of the ADA on assistive technology development found that although references to civil rights laws were not typical in patent records, applications mentioning the ADA increased after passage of the act (Berven and Blanck, 1999). That study, which examined patent applications from 1976 through 1997, found a substantial increase in the numbers of patents related to various kinds of impairments over the entire period but did not note a particular spike after the passage of the ADA.

Accessible Mainstream Technologies

As described earlier in this chapter, public policies have sought to make some mainstream products more accessible, particularly telecommunications and other electronic and information technologies. Some of these policies apply only to government purchases. The ADA focused on reducing certain kinds of environmental barriers and setting standards for the accessibility of buildings, transportation systems, and other public spaces. Although that law and accompanying regulations covered some products that are often installed in buildings (e.g., ATMs), many other mainstream products that are not covered by the ADA or other policies also present substantial barriers to people with disabilities. With an aging population, inaccessible mainstream products will present increasing burdens and costs to individuals with disabilities in the form of reduced independence and reduced participation in the community. This, in turn, will create costs for family members and other caregivers and for society in general. As with the policies discussed in other chapters, further actions to remove barriers and expand access to helpful technologies will have to be assessed in relation to other pressing demands on public and private resources.

Recommendation 7.2: To extend the benefits of accessibility provided by existing federal statutes and regulations, the U.S. Congress should direct the Architectural and Transportation Barriers Compliance Board (the Access Board) to collaborate with relevant public and private groups to develop a plan for establishing accessibility standards for important mainstream and general use products and technologies. The plan should

· propose criteria and processes for designating high-priority product areas for standard setting;

· identify existing public or private standards or guidelines that might be useful in setting standards; and

· include medical equipment as an initial priority area.

This recommendation proposes a priority-setting process to extend the accessibility policies of the federal government to new product areas. Such a process would take industry concerns as well as consumer and health professional concerns into account and would also consider technical issues in setting standards for different kinds of products. Taking into account the issues discussed in Chapter 6, the committee identified medical equipment as a priority area. It also identified home products and product packaging as particularly important for helping people maintain the most basic levels of independence in activities of daily living. Among the criteria that might be considered in a priority-setting process are the numbers of people likely to be affected by a product and related standards, the potential for standards to improve product accessibility, and the potential for standards to have unwanted effects, such as sharply increasing costs and discouraging innovation.

Increasing Public and Professional Awareness

Discussions of assistive technology generally focus on the development of new and better assistive and accessible technologies and on better insurance coverage. An equal need (also acknowledged in the 1991 IOM report on disabilities) exists to make sure that people with disabilities and those close to them are aware of existing products or product categories, especially products that may not be mentioned or prescribed by health care professionals. Increasing consumer and professional knowledge about assistive technologies should increase the use of the products, which should, in turn, make the market for such products more attractive to private companies, promote greater product diversification, reduce the costs of some products, and generally increase product availability.

The committee believes that a substantial national program to increase the awareness, availability, and acceptability of assistive technologies and accessible mainstream technologies is timely, given the demographic changes in the United States noted earlier in this report. The objectives would be to assist the people with disabilities, family members and friends, and health professionals in learning about (1) the existence and range of potentially beneficial mainstream and assistive technologies and (2) the ways in which consumers and professionals can obtain additional, up-to-date information about available technologies and products. A campaign can build on the information provision efforts already undertaken by NIDRR and other federal agencies and upon the particular expertise of the Centers for Disease Control and Prevention in developing and managing public and professional awareness programs. In addition, state public health programs are natural partners in developing and implementing an awareness campaign. The campaign can also build on ideas suggested by the National Task Force on Technology and Disability in its draft report (NTFTD, 2004).

Recommendation 7.3: The Centers for Disease Control and Prevention, working with the National Institute on Disability and Rehabilitation Research, should launch a major public health campaign to increase public and health care professional awareness and acceptance of assistive technologies and accessible mainstream technologies that can benefit people with different kinds of disabilities.

Increasing Public Awareness

The consumer component of a public awareness campaign would target not only the lack of knowledge about available technologies but would also help people assess whether they have developed functional deficits for which helpful products exist. The campaign would include guidance for people on

· recognizing their potential needs for assistive technology;

· finding useful information about available technologies and their pluses and minuses;

· identifying and evaluating specific products;

· locating sources of financial assistance; and

· working with health care professionals, suppliers, manufacturers, and others to obtain, maintain, adjust, repair, or replace equipment.

In some cases, people are aware of products but consider them unattractive or stigmatizing, which can be a major barrier to their use. A large-scale, long-term, repetitive public media campaign to increase the acceptance of assistive technologies can highlight what products are available to “make life easier” and convey that it is normal to use smart technologies. Promotions might show celebrities using technologies and natural-looking aids. Another strategy might be to persuade the producers of popular television programs to show the unobtrusive, routine use of assistive technologies. The idea is to help people feel more comfortable using technologies that may allow them to live independently longer or to stay with their families longer by reducing the amount of informal caregiving needed. If a public awareness campaign identifies unattractive product design as a problem, then that knowledge can also guide contacts with manufacturers and designers about how to modify the products to reduce this barrier to the use of helpful technologies.

Increasing Professional Awareness

In contrast to medications, getting assistive technologies to those who could benefit from them requires more than a physician’s prescription. The process also involves the broader spectrum of rehabilitation professionals, such as physical and occupational therapists. Current data suggest that the primary source of information regarding assistive technologies is physicians and other medical personnel (Carlson and Ehrlich, 2005). It also suggests that many people are also unaware of their options.

Nonetheless, in the committee’s experience, the lack of awareness by health care professionals (especially those who are not rehabilitation specialists) of the range of assistive technologies and their potential uses is a significant barrier to the wider and more effective use of these technologies. Remedying this lack of awareness will involve efforts on several fronts, including the undergraduate, graduate, and continuing education of health professionals. The committee recognizes that space is at a premium in heavily loaded and tightly structured professional training curricula. Strategies need to be identified to provide quick, interesting, and effective means of injecting information about helpful technologies and methods of assessing consumer needs into education programs.

Health care professionals themselves generally do not need to be experts in the technologies; rather, they need to know, in general, what exists that might help their patients or clients and what basic features of a technology are important for a given patient (e.g., features for people who lack fine motor skills). With this basic knowledge, physicians and other health care professionals may continue their education about particular technologies on their own, designate staff to become resources, or encourage their patients or clients to investigate technologies that do not require a physician prescription or particular professional assistance.

In sum, increasing consumer and professional awareness of useful assistive and accessible technologies should have a positive effect on the use of these technologies and, in turn, on people’s functioning and independence. As noted throughout this chapter, the acquisition of useful technologies may be limited by a lack of insurance coverage or other financial access, particularly for people with modest or low incomes. The next two chapters discuss selected issues related to the financing of health care services for people with disabilities.

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Footnotes

The committee recognizes that all technologies—scissors, wheelchairs, or computers—are assistive in some sense, that is, are tools to serve some human purpose.

The statutory definition of assistive technology could be interpreted to include medications (as an “item”), as well as an array of implanted medical devices, such as cardiac pacemakers, orthopedic rods and plates, electronic neurostimulators, artificial joints, and catheters. Although some implanted devices and certain medications may improve functional capabilities, such as the ability to walk, bend, or reach, this report—consistent with most reports consulted by the committee—generally excludes both implanted devices and medications from the definition of assistive technology.

Health plans with case management or similar programs or policies will sometimes waive usual policy limitations and pay for a mainstream product for an individual when it is clear that the product will perform at least as well as a specialized assistive product and will be less costly. See NHATP (2001) for an extensive discussion of how consumers can use cost-effectiveness arguments to persuade health plans to pay for technologies that are not normally covered; see also RESNA (2002).

The term “universal design” was coined by the late Ron Mace, The Center for Universal Design, North Carolina State University College of Design.

Some suggest reserving the term “accessible design” for design features or processes that meet legal requirements (Erlandson et al., 2007).

In one definition, medical instrumentation is broadly defined to include “any furniture, measuring device, device that comes in contact with or is designed to be manipulated, monitored or read by health care professionals, lay person caregivers or end-user patients themselves as part of the provision or receipt of medical services, interventions or care, and any user-controlled software designed or required to be installed and used in connection with such technology, or any process or control system with which such patients or caregivers must interact in order for medical services, medical information, or treatment results to be achieved, measured or communicated” (Mendelsohn, 2007, p. 65).

The law does not require accessibility for equipment that has embedded information technology, such as heating and ventilation system controls, as long as the principal function of the equipment is not information management, storage, manipulation, or similar activities.

How much has been accomplished under this initiative is difficult to gauge. A New Freedom Initiative website created by the U.S. Department of Health and Human Services does not provide much information specific to the initiative, and most of the specific information dates back to 2003 or earlier (http://www.hhs.gov/newfreedom/links.html).

Beyond supporting research, as discussed in Chapter 10, NIDRR is also charged with providing practical information to professionals, consumers, and others; disseminating the knowledge generated by research; and promoting technology transfer.

For example, some items, including a convection oven, are convenient for people with disabilities but appear to have been neither intended for their specific use nor deliberately designed to be accessible to as wide a range of users as possible. Items designed by applying universal design principles include a vegetable peeler aimed at the mass market but intentionally designed to be easy to use by people with limited hand strength or dexterity. Examples of listed items that are intended primarily for use by people with specific impairments include a vegetable peeler with a clamp that allows use with only one hand and a carbon monoxide detector for use by people with hearing limitations.

Consistent with the definitions used in much clinical and health services research, effectiveness refers to the extent to which an assistive (or mainstream) technology meets the needs of users in everyday life. (It may also refer to the extent to which the technology performs as intended.) Efficacy, in contrast, refers to outcomes in clinical trials or other controlled research settings.

For example, in 2003, the FDA approved the iBOT, a battery-powered wheelchair that can rise to eye level, climb stairs and curbs, and traverse uneven surfaces by using a computer-controlled system of sensors, gyroscopes, and electric motors (FDA, 2003). The agency reviewed test data on the device’s mechanical, electrical, and software systems and also evaluated information from a prospective, nonrandomized study with 18 individuals (of 29 who were initially enrolled). These research participants were trained to use the device and were then observed for 2 weeks in the test device and 2 weeks in their regular wheelchair or scooter. As described in the agency’s approval notice, 12 of the participants could climb up and down stairs alone with the device, whereas 6 required an assistant; but none could climb a single step with their regular device. (The only injuries that occurred involved minor bruising related to a fall out of the chair.) On a test of independence in functioning for a range of tasks (e.g., stair climbing), the participants showed more independent functioning when the task involved the device’s special features but equal functioning when the device offered no advantage over the person’s regular equipment. The device was, however, rated as difficult to maneuver compared with the maneuvering difficulty of the participant’s regular device in the home. As a condition for approval, the device manufacturer agreed to provide data on device failures and adverse events for 2 years following its approval. In 2006, the Centers for Medicare and Medicaid Services concluded that several of the device’s advanced features (e.g., its stair-climbing capacity) did not provide a clinically significant benefit (CMS, 2006d), as discussed later in this chapter.

A recent review of instruments for measuring the outcomes of assistive technology use reported that most published reports about instruments or their use date to the mid-1990s or later (Smith et al., 2005).

For example, one pilot study in a nursing home setting examined functional outcomes and quality of life before and after the provision of individually prescribed seating and mobility systems for 60 users of wheelchairs (Trefler et al., 2004). The investigators concluded that after the new system was provided, the participants “had less difficulty independently propelling their systems and increased forward reach, quality of life for social function and physical role, and satisfaction with the new wheelchair technology” (p. 18).

Another controlled study with older adults with chronic conditions evaluated a package of interventions (e.g., exercise, instruction in problem-solving strategies, home modifications, and related training), most of which did not involve equipment (Gitlin et al., 2006). The investigators reported that participants in the intervention group had fewer difficulties with activities of daily living and instrumental activities of daily living, a greater sense of self-efficacy, and greater use of adaptive strategies.

Assessment instruments included the Functional Independence Measure (motor and cognitive sections), the Older Americans Research and Services Center Instrument, and the Craig Handicap Assessment and Reporting Technique (physical independence, mobility, occupation, and social integration sections).

People with low-incidence disabilities and children with certain disabilities are two examples of populations that may require public-sector support for product development. Even when the number of children with a condition is sizeable, children’s growth and development mean that many different sizes of a product may be required. Unlike a medication, which often can be provided in different doses to people of different ages, many medical devices and assistive technologies cannot be manufactured in one form and then easily “sized” at the time of delivery or use (IOM, 2005b).

For drugs, Congress has defined a rare disease or condition to mean one that either affects less than 200,000 people in the United States or affects more people but for which there is “no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will be recovered from sales in the United States” (PL 97-414, Section 526 [360bb](a)(1)). For medical devices that require FDA approval, Congress created special exemptions from certain regulations for humanitarian use devices, which are “intended to benefit patients in the treatment or diagnosis of a disease or condition that affects or is manifested in fewer than 4,000 individuals in the United States per year” (21 CFR 814.3(n)). For a description of these provisions, see the report of FDA (2006.) These provisions affect very few devices.

The Rehabilitation Act of 1973, which established NIDRR, provided for agency support for these centers, and the program began with five centers.

The direct-to-consumer television advertisements for scooters and power wheelchairs (which prominently mention Medicare coverage) are the exception rather than the rule, but they also contribute to government concerns about fraudulent and abusive marketing. These concerns have provoked various government efforts to curtail abuse; these efforts, in turn, have been criticized by consumer and suppliers as draconian (see, e.g., Jalonick [2006] and RESNA [2006]; see also Chapter 9).

Committee members reported hearing the label “inflictor” applied to professionals who prescribe or select assistive technologies without involving the consumer and considering that person’s views about what will work in his or her own life.

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4 Top Travel Tips for People With Arthritis

By Lynda Shrager

Published Aug 11, 2014

Arthritis doesn’t have to hamper your ability to have a great vacation – and getting away may just make you feel better. Use these tips to organize and plan ahead for a wonderful trip.

1. Pick the Right Destination

Research destinations that accommodate people with mobility restrictions. Travel guides, professional tour operators or travel agents are good resources. Search “travel with disabilities” for lots of ideas.

Be realistic and plan activities within your capabilities. Rock climbing may be too strenuous, but a mountaintop helicopter excursion will afford the same view (maybe better!).

Seek advice from others who have taken similar trips. Plan your itinerary carefully, pace yourself, and leave plenty of time for rest. Before you go, consider talking to your doctor about preventive and self-help measures that are specific to your particular condition.

2. Pick the Right Accommodations

Getting a good night’s sleep can help you control your pain and give your body a chance to rest to prepare for the next day’s activities. Where you sleep is important! All places of lodging built after 1993 must comply with the Americans with Disabilities Act (ADA) but their accessibility levels may vary. Most large chains have an ADA “help desk” with someone who can answer general questions, but I recommend speaking with an on-site representative to confirm that your requests have been met. Features to look for when choosing your room will depend on your level of need, but here are some things to consider:

How close is the room to the restaurant, pool, beach, and elevator?

Are the bathrooms fully accessible, which means they have walk-in showers with grab rails, high toilets, and lever doors and faucets?

Is the room big enough to handle a wheelchair?

Does the facility have handicapped parking and access ramps?

3. Pack Right and Light

I can attest to the fact that packing light decreases stress on your joints – I too have felt the pain of lugging around my own suitcase overstuffed with shoes. Try to find comfortable luggage that is lightweight before you put anything into it. Look for wide, cushioned shoulder straps that you can place across your chest to distribute the bag’s weight if you can’t roll the luggage.

If you have small adaptive equipment such as a folding reacher, special eating utensils, blow-up raised toilet seats or microwave hot packs, consider packing them for your trip.

Check the extended forecast. Plan loose-fitting clothing for maximum freedom of movement, and layer it to adapt to changes in the weather.

4. Pick the Right Mode of Transportation

Try to make reservations well in advance as you will have more opportunities to get special seating on planes, trains, and buses.

Air: The Air Carrier Access Act prohibits discrimination based on disability and has made airlines and terminals much friendlier than in the past. Make an effort to fly nonstop direct. It may cost more, but not having to change planes and deal with a long layover is often worth it. Transportation Security Administration (TSA) rules change depending on the world situation. TSA recommends you call their help line 72 hours ahead of your scheduled travel time to find out what to expect during screening, and how to transport any equipment you may have. Call TSA Cares toll free 1-855-787-2227.

Train: Amtrak offers special accommodations, including accessible bedrooms and bathrooms, but they strongly suggest making reservations far in advance as these are limited. They offer rail discounts to a person travelling with a disability, along with one companion.

Bus: The major carriers are fully accessible and often offer discounted tickets to caregivers.

Ship: Most cruise ships have accessible state rooms that are big enough to accommodate a wheelchair and other needed equipment. You must reserve well in advance and speak with the cruise line’s representative about your specific needs.

Car: Here you will have the most control and freedom. If you are renting a car, treat yourself to one with as many power controls as possible.

Have a great vacation, and share some of your adventures with us!

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What Is an Arthritis Bra?

Specialty Clothing Designed for Women With Limited Range of Motion

By Carol Eustice

Arthritis & Joint Conditions Expert

Psoriatic Arthritis

Rheumatiod Arthritis

Rheumetoid Arthritis

Arthritis Remedies

Knee Arthritis

Yoga for Arthritis

Arthritis & Joint Conditions Categories

Types of Arthritis - Rheumatic Diseases and Conditions

Joint Pain (Ankle to Wrist)

Arthritis Symptoms and Diagnosis

Arthritis Medications - Drug Side Effects

Arthritis Pain Relief

Diet and Exercise - Managing and Preventing Arthritis

Alternative and Natural Treatments for Arthritis

Arthritis Treatment - Joint Surgery - Arthritis Research

Assistive Devices - Mobility Aids

Managing Daily Living Activities With Arthritis

Coping Strategies for Arthritis

Arthritis Doctor - Rheumatologist - Insurance

Working With Arthritis - Disability

Inspiration and Support

Frequently Asked Questions About Arthritis

Arthritis Symptoms / Diagnosis

Arthritis Treatments

Living and Coping With Arthritis

Updated Articles and Resources

Updated June 02, 2014.

Women with arthritis in their upper extremities -- whether it be their shoulders, elbows, hands, wrists, or fingers -- often have difficulty putting on a bra. Putting on a bra is a simple activity of daily living that is taken for granted by healthy people. There is an arthritis bra, as it's called, made with front closures or velcro that makes it not only possible to put on, it's easy to put on.

1 . The Easy-to-Fasten Arthritis Bra

Another front-closing arthritis bra. An easy to grasp, large loop at the front of the bra facilitates closure and the large hook'n'eyes are also easy to manipulate. A Velcro closure along the seam provides added security. More »

2 . Arthritis Bras from Leading Lady

AmericanIntimates sells arthritis bras by Leading Lady. The bra has an easy-to-fasten patented front closure designed for women with limited dexterity. One of the styles is an underwire bra. More »

10 Cooking Tips for People With Arthritis

Velcro Shoes Are Great for Women With Arthritis

Can an Arthritis Glove Help Relieve Pain?

Better Living With Arthritis

Velcro Shoes Are Great Option for Men With Arthritis

Elbow Arthritis

Our Expert Recommends

Dressing Aids for Arthritis Patients

Women Affected by Arthritis More Than Men

Arthritis Aids Make Living With Arthritis Easier

Arthritis Affects Daily Living Activities

Mobility Aids - What You Need to Know

Declare Your Independence

Better Living With Arthritis - Adaptation Is Key

Do You Hate to Ask for Help?

Jealous of Able-Bodied People?

http://arthritis.about.com/od/groomingdressing/tp/arthritis_bra.htm

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http://www.ncbi.nlm.nih.gov/books/NBK11418/

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Original Author: Dr Michelle Wright	Current Version: Dr Naomi Hartree
Document ID: 2065 (v21)	Last Checked: 22/06/2011	Next Review: 20/06/2016

Saturday, December 6, 2014

CANADA MILITARY NEWS- tips 4 DISABLED- seniors-- fire - how 2 make do and some hints- Canada/USA/Aussie/Europe/UK etc. from dressing 2 shopping 2 living- feeeck em all...do it your way...oops sorry Pope.

Assistive and Mainstream Technologies for People with Disabilities

Disability Air Travel Information for Seniors and Disabled

Accessible Housing by Design — Fire Safety for You and Your Home

Universal Design

Meeting Your Needs

Consider Your Needs When Confronted With an Emergency Situation

Fire Safety Planning

Talk to Your Fire Department

Consider Your Abilities

Install Appropriate Warning Devices

Make Your Home Fire-Safe

If You Have Low Vision or Are Blind:

If You Have a Mobility Disability:

If you have a poor memory or a cognitive limitation:

Plan to Communicate

Plan Your Evacuation Routes

Practise Evacuating

Strategies for Evacuating Your Home

The “Buddy System”

Guiding

Using a Wheelchair for Stair Evacuation

Assistive Devices for Evacuation

Transferring and Carrying Techniques

Living in High-Rises

Work With Building Managers

Protect in Place

Areas of Refuge

Elevators

Assistive Devices

Glossary

The Principles of Universal Design

Principle 1: Equitable Use

Principle 2: Flexibility in Use

Principle 3: Simple and Intuitive

Principle 4: Perceptible Information

Principle 5: Tolerance for Error

Principle 6: Low Physical Effort

Principle 7: Size and Space for Approach and Use

Additional Resources

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