The battle to secure the rights of people with mental illness to live in communities has taken place as policy emphasis has shifted from community residential facilities toward personal choice of where, how, and with whom to live.

J. Wolf
"Out of Mind, Out of Sight?"
From Housing Discrimination to
Public Accommodations Legislation
Journal of Disability Policy Studies, Summer 1990

Too often older or disabled people live limited lives or give up their homes and neighborhoods prematurely because standard housing of the past cannot meet their needs....The universal design concept...allows people to remain in their homes as long as they like.

Ron Mace FAIA
Architect and product designer
Universal Design
1994

Living in the community is essential to independence and full participation for people with disabilities. Accessible, available, affordable housing is key to living in the community. Historically, people with disabilities have resided in isolated institutions, segregated from the mainstream and "out of sight, out of mind." Despite progress in deinstitutionalization, freedom of choice in where to live remains an unattained goal for people with disabilities.

The obstacles people with disabilities encounter in attempting to secure adequate housing in the community are multiple. Often low income levels exclude them from access to mortgage loans or render rental payments unaffordable. When people with disabilities do own or rent homes, the cost of modifications to make them fully accessible and usable may be prohibitive. Even if they are able to afford modifications, they may be forced to settle for inadequate ones because designers, contractors and rehabilitation professionals skilled in barrier-free and universal design are unavailable. Even when they gain access to government assistance, their housing needs are often unmet. A recent report by the U.S. Department of Housing and Urban Development (HUD) noted that 47 percent of non-elderly individuals with disabilities had "worst case needs" in housing (HUD 1994). Despite the relatively high rates of assistance reflecting their eligibility for rental programs, they are the group most likely to live in severely inadequate housing.

Federal Programs

All federally subsidized housing serves fewer than one third of all eligible applicants, with and without disabilities. The Federal Government's urban housing programs addressing the housing needs of people with disabilities are administered by HUD. The rural housing programs are administered by the U.S. Department of Agriculture. All public housing agencies are managed by HUD. Since the 1970s they have been required to provide at least 5 percent fully accessible and 2 percent deaf/blind accessible apartments throughout their programs. Many of the accessible apartments have been located in buildings designated for the elderly and people with disabilities. Congress recently authorized public housing authorities to make those buildings available only to people age 62 and older.

Both the Department of Agriculture and HUD administer rental certificate and voucher programs that enable people with disabilities to locate their own housing in the community. The lack of accessible, affordable housing in many communities limits the effectiveness of the vouchers. In addition, HUD administers the "202" and "811" programs. The 202 program is directed toward people aged 62 and older, with and without disabilities. The 811 program is directed specifically to people with disabilities under age 62. HUD recently requested authorization from Congress to spend 25 percent of the 811 funds for vouchers and plans to increase the request to 50 percent in the near future.

Historically, HUD has emphasized providing service-connected housing for people with disabilities and placing people with disabilities into "disability only" or "disability and elderly only" housing. This approach is currently reflected in the McKinney programs, which specifically target homeless people with mental illness and drug and alcohol addiction histories, and in the Housing for People with AIDS Program. This emphasis has resulted in segregated housing and has provided little housing choice to eligible applicants.

Local Innovation

A number of efforts in local communities demonstrate creative financing for housing for people with disabilities that maximizes choice and autonomy. Atlantis Community, an independent living organization in Colorado run by people with disabilities, in conjunction with Northwest Bank, created a Disability Home Ownership Program that assisted more than 100 individuals in buying their own homes while generating more than $6 million in mortgage loans (Svaldi 1995). Experiments are under way in a number of communities exploring affordable housing models such as mutual housing associations and limited equity cooperatives to produce accessible housing in integrated settings. A number of home modification programs are also in operation, using Community Development Block Grants and state funds to support adaptations of homes and rental units for people with disabilities and elders. In 1993, the Administration on Developmental Disabilities in the Department of Health and Human Services funded the National Home of Your Own Alliance to promote home ownership opportunities for people with disabilities. The Alliance is currently working on local demonstrations in 13 states and intends to initiate coalition building among housing and disability advocates in 23 states by the end of the decade.

Support Services

For people with disabilities, the choice of where to live is often limited by program requirements of the government or service providers. Funding for support services is often tied to housing. For example, under the Intermediate Care Facilities for People with Mental Retardation program, Medicaid may pay for a group home and the services needed for a person who lives there. The option of living with a roommate at another location must be forgone because the individual would risk losing needed support services if she or he moved. When eligibility for support services is decoupled from eligibility for a housing subsidy, people with disabilities are not so restricted in where they might live. Developing a community-based support system independent of housing programs would require considerable redirection of funds, and in some communities, the development of an infrastructure where one currently does not exist.

Homelessness

The last decade has witnessed a continued increase in the number of homeless people, many of whom have disabilities such as mental illness or HIV/AIDS. Despite numerous government programs intended to assist them, their numbers continue to grow. Homeless shelters are frequently inaccessible.

Neighborhood Resistance to Group Homes

Resistance in communities to group homes for people with mental illness and mental retardation remains prevalent, despite antidiscrimination laws such as the Fair Housing Act Amendments of 1988. A number of studies indicate that group homes do not affect the value of residential property or the stability of neighborhoods (Lauber 1986), however, discrimination persists.

Accessible Housing Stock

A recent survey found that 7.1 million people were living in homes with accessible features, such as handrails, ramps, extra-wide doors and raised toilets (LaPlante 1995a). However, the availability of homes that are fully accessible to and usable by people with disabilities is inadequate. When people with disabilities seek single-family homes in the private market, they confront a lack of accessible and adaptable housing stock. While there is considerable evidence that home modifications and appropriate design can save service dollars, make caregiving easier and forestall or prevent institutionalization, there is no national policy or service system guiding the funding or delivery of home modifications and repairs or the design of housing that maximizes the independence of people with disabilities (Wilner 1994).

The concept of universal design has evolved during the last decade to mean buildings and items that are usable by most people regardless of their level of ability or disability. For example, round doorknobs are not usable by people with limited use of their hands, but lever handles are usable by almost everyone, including people with no hands. Universal design addresses the scope of accessibility and seeks to make all elements and spaces accessible to and usable by all people to the greatest extent possible. It need not increase costs or result in special or different-looking structures or features (Center for Universal Design n.d.).

Key Legislation in the Past Decade

The Housing and Community Development Act of 1987 (P.L. 100-242) requires the Secretary of HUD to earmark at least 15 percent of Section 202 funds for use in developing housing for non-elderly persons with disabilities and separate housing standards for people with disabilities and people who are elderly.

The Stewart McKinney Homeless Assistance Act of 1987 (P.L. 100-77) provides funds for transitional housing projects, with no less than $15 million for permanent housing for homeless people with disabilities.

The Fair Housing Act Amendments of 1988 (P.L. 100-430) (FHAA) prohibit discrimination against people with disabilities in the sale, rental or buying of private housing. Dwellings having four or more units built for first occupancy after March 13, 1991, must be built in a manner that includes certain features of accessible and adaptable design.

The National Affordable Housing Act of 1990 (P.L. 101-402) authorizes the Home Ownership and Opportunity for People Everywhere program, which assists low-income people in purchasing apartments or single-family homes. The Shelter Plus Care program provides rental assistance and support services to individuals who are homeless and disabled. The legislation also authorizes the HOME Investment Partnerships program, which provides grants to help state and local governments expand the supply of affordable housing through new construction, rehabilitation of existing housing and rent subsidies to low-income families.

Recommendations

Enforcement of Existing Fair Housing and Civil Rights Laws

1. Federal agencies charged with enforcing civil rights laws related to housing, including HUD, the Department of Agriculture, and the Department of Justice, should strengthen enforcement efforts of the Fair Housing Act, Section 504 of the Rehabilitation Act, and Title II of the Americans with Disabilities Act (ADA) by

a) including knowledgeable people with disabilities, disability advocates and advocacy organizations in enforcement activities such as monitoring and testing in the housing, banking, real estate, design and construction industries;

b) including knowledgeable people with disabilities, disability advocates and advocacy organizations in the Notification of Funding Availability process of selecting grantees under the Fair Housing Initiative Program (FHIP) and Fair Housing Administrative Program (FHAP) grant competitions;

c) developing initiatives to ensure that entities controlled by people with disabilities, such as independent living centers, are eligible for funding under the FHIP and FHAP competitions and instituting application incentives, such as the allocation of bonus points on grant applications, for applicants that are organizations run by people with disabilities.

Currently most disability rights organizations are ineligible for such competitions because they do not meet the requirement to be "qualified fair housing organizations." The ineligibility of disability rights organizations has precluded the active involvement of the disability rights community in enforcing fair housing laws. It is critical to have a disability perspective represented in these activities and to engage the disability community in the enforcement of housing rights laws.

d) designing mechanisms and strategies to strengthen the protection of complainants with disabilities against retaliation, such as aggressively prosecuting violators and seeking the maximum penalties for retaliation that are available under the law;

e) redirecting housing funding away from separate housing or housing that requires special terms or conditions and toward housing in the most inclusive settings with maximal consumer control, in keeping with the tenets of FHAA, ADA and Section 504 of the Rehabilitation Act;

f) requiring housing to be certified for compliance with accessibility codes and other provisions of law by designers, builders, developers and owners;

In many communities builders and developers call on laypeople with disabilities to advise them as to the accessibility of their buildings. While there is no substitute for an assessment of accessibility by knowledgeable people with disabilities, neither is there any substitute for a professional determination of compliance with accessibility standards. Too often builders and developers believe that because someone with a disability determined that a particular aspect of a building was accessible, the entire building is in compliance with accessibility codes. Likewise, too often builders and developers have little or no knowledge about the extent to which or the manner in which accessible features are used by people with disabilities. While both sets of expertise are critical, it is the builder and designer who are ultimately accountable for compliance.

g) providing policy guidance, clarification, and interpretation of the FHAA by continually clarifying and disseminating information through published material in accessible formats, including the full participation of the disability advocacy community in the process;

h) ensuring that all federal, state and local officials with responsibility for fair housing enforcement are thoroughly trained in the disability provisions of relevant civil rights law and that such training includes components that promote sensitivity to the discrimination experienced by people with disabilities and to the impact of operational, architectural, communications and attitudinal barriers.

Sensitivity training components should be conducted by people with disabilities, including individuals with psychiatric, developmental, sensory and physical disabilities.

Delinking Services from Housing

2. The Congress should enact legislation prohibiting HUD from funding programs that require an individual to live in a particular setting in order to receive services that are not related to housing (e.g., long-term support services).

Housing for people with disabilities should be based on housing needs, not service needs. Requiring people with disabilities to accept services in order to live in a particular unit or to live in a particular unit in order to receive the services they need is inappropriate. Many people with disabilities do need services; however, the choice of services should be their own, not that of the housing provider.

Segregated, Set-Aside and Diagnosis-Specific Housing

3. The Congress should direct HUD and other relevant federal agencies to fund housing programs for people with disabilities on the basis of need, not diagnosis or label, and on the basis of an independent living model of individual control and choice with full integration.

Such an approach would end the funding of segregated or diagnosis-specific housing as well as set-asides for individuals with a specific diagnosis. Group homes, transitional housing for people with alcoholism or substance abuse problems, housing for people with HIV/AIDS, 202 and 811 programs, and apartment buildings for people with mental illness would be replaced by housing programs targeted to individual need and based on individual choice. Section 8 vouchers for people with AIDS, funds for homeless individuals who are "dually diagnosed" with mental illness and substance abuse and "Shelter + Care" money for people with mental illness would also be replaced by programs flexibly designed to accommodate individual needs and choices.

Affordability

4. Congress and the administration should develop initiatives to ensure affordability of housing so that people with disabilities have choice in housing options, including

a) establishing home modification programs, such as tax deductions approved by the Internal Revenue Service, that would enable individuals with all types of disabilities to eliminate barriers and enjoy the full use of their dwellings (e.g., by installing flashing doorbells for people who are deaf, providing ramps and structural modifications for people with mobility disabilities, lowering cabinets and environmental controls for people of short stature and adding soundproofing for people with psychiatric disabilities);

b) giving priority to those most in financial need, for example, allocating 50 percent of the units developed under the affordable housing formula to people whose income is below 30 percent of the federal poverty level;

c) requiring rental agents and building owners to consider housing vouchers as income so that people holding vouchers will be assessed for eligibility in the same manner as applicants without vouchers;

d) requiring banks and mortgage companies to consider housing vouchers as income so that people holding vouchers will be eligible for mortgage funding in the same manner as applicants without vouchers;

e) ensuring that individuals with disabilities have equal opportunity to satisfy equity requirements for sweat equity home ownership programs, including acknowledgment of nonphysical labor;

f) requiring that vouchers and Section 8 certificates be portable across state lines.

Construction Practices

5. The Congress and the President should develop initiatives to promote the universal and accessible design of housing, including

a) replacing the notion of a percentage of set-aside accessible units or houses with a requirement for a basic level of access in all new dwelling units and in all renovations;

b) until universal design can be fully achieved, promoting a level of accessibility which would enable people with disabilities to comfortably visit homes (called "visitability") in all single-family construction, even when no federal funds are involved, through tax credits, code changes, legislation and education;

c) ending federal support, including loans and Federal Housing Administration guarantees, for single-family dwellings that are not accessible;

d) requiring maximum feasible accessibility in renovations of single and multi-family dwellings funded or guaranteed by the Federal Government;

e) increasing the number of two-and three-bedroom units available to people with disabilities in order to support families that include members with disabilities and to accommodate individual needs such as equipment storage, attendants' rooms, home offices, and space to isolate toxic products within dwellings (for people with multiple chemical sensitivities).

Research and Data Collection

6. Congress and the administration should develop initiatives to expand research and data collection about housing for people with disabilities that involve the input and participation of the disability community. Research results and data collected as a result of these initiatives should be routinely disseminated through a variety of accessible communication mediums. Topics for research and data collection should include

a) information necessary to promote the replication of successful models and demonstration projects;

b) ways to expand the effective design of housing for people with multiple chemical sensitivities;

c) research on the relationship of homelessness and disability and effective programmatic responses based on independent living principles;

d) research on compliance and enforcement of building codes;

e) data on the disability related characteristics of housing stock and markets, such as accessibility, ownership and affordability, and consumer satisfaction.

Black people fought for the right to ride in the front of the bus. We are fighting for the right to get on the bus.

Mark Johnson
ADAPT

Accessible transportation is essential if people with disabilities, particularly persons who are severely disabled, are to live independently in the community. The development of transportation services has moved from a focus upon special and separate...programs to an emphasis upon making fixed-route, mainstream systems accessible.

Frank Bowe
"Transportation: Key to Independent Living"
Archives of Physical Medicine and
Rehabilitation, Vol. 60, No. 10

There was a time in this country when I was required to ride in the back of the bus. I could not accept that kind of discrimination then, and I will not accept it now for any American....What disabled Americans seek with this legislation is the dignity which can only come with the full recognition of their civil rights.

Representative Cardiss Collins
House passage of ADA
May 22, 1990

Transportation is a linchpin to independence for people with disabilities. Despite important progress in increased accessibility, transportation remains a major obstacle to employment and participation in the community for people with disabilities.

Transportation policy for people with disabilities is a matter of both civil rights and services. The debate about transportation over the years has often pitted a civil rights view against a services view. Some researchers have concluded that rendering the transit system accessible is simply too costly. Some have argued that a separate system of vans and taxis--paratransit--is most effective, while others have argued for requiring the generic transit system to become accessible as a matter of equal access.

The Americans with Disabilities Act (ADA) resolved the decades-old debate by requiring an accessible fixed-route system with paratransit available for those who, because of their disabilities, are unable to use the fixed-route system. The strategy was to gradually render the fixed-route system more accessible so that more people with disabilities would use it and fewer would use the more expensive paratransit. Such a strategy is long-term and will likely take over a decade to implement.

Increasing Accessibility and Paratransit

Transportation access for people with disabilities includes the removal of physical, structural, communication and environmental barriers. For example, auditory information should be presented in visual formats (e.g., electronic messaging systems) for people with hearing disabilities. While full accessibility remains a long-term goal, the first five years of the implementation of ADA has witnessed an increase in both the accessibility of the generic system and the use of paratransit. In 1989, prior to the enactment of ADA, about one-third of fixed-route vehicles were accessible. In 1996, 60 percent of all buses meet ADA standards. Rural systems lag behind urban systems in accessibility--only 35 percent of rural fixed-route vehicles are accessible. Projections for urban areas indicate that 70 percent will be lift-equipped by 1997 and 100 percent will be lift-equipped by 2003 (Project Action 1995).

In 1989, prior to the enactment of ADA, paratransit was providing 16 million rides per year. By 1995 the number had risen to 37 million, and it is projected to be 48 million in 1997 (Project Action 1995). Some portion of the increase in use is attributable to enhanced services' generating a greater demand by both the disability community and the elderly community. A portion is also attributable to transit authorities' implementation of an expansive definition of eligibility. The disability community, transit authorities and governments are concerned about the increasing use of paratransit, which is projected to cost over $700 million annually at full service in 1997 (Project Action 1995). They are working together to address problems that have arisen.

Rail Systems

Rail systems are increasing in accessibility, though slowly. At the end of 1995, 450 key stations for rail systems were determined to be accessible by the Department of Transportation (DOT). Over 200 were granted varying time extensions up to the year 2020. One hundred and twenty-seven key stations are currently either in litigation or participating in compliance negotiations with the Federal Transit Authority. The ADA requirement that one accessible car be available on every train was met in 1995 (Project Action 1995). Expanded visual access (e.g., signage, electronic message boards) and teletypewriters (TTYs) are required for people with hearing disabilities. Detectable warnings are required next to rails in order to warn people with visual impairments of their proximity to the track. There has been considerable debate as to what constitutes an effective detectable warning.

Curb Cuts

A common transportation obstacle for people with disabilities is lack of curb cuts from sidewalks to streets. Without curb cuts, people who use wheelchairs cannot get from their homes to bus stops or subway stops to use fixed-route transportation. Many state and local governments complained that they were unable to meet the deadline for installation of curb cuts at existing pedestrian walkways. As a result, the Department of Justice (DOJ) has proposed extending the time period for compliance by several years. Without curb cuts, use of accessible fixed-route systems will be limited for many people with mobility impairments, possibly resulting in greater use of the more costly paratransit services.

Other Forms of Transportation

Other forms of transportation, such as private shuttle vans from hotels to airports and taxis, are increasingly accessible; however, a person with a disability certainly cannot take accessibility for granted when traveling. For example, information boards at airports remain visual. Pay phone access at airports remains at minimal levels, making it extremely difficult for people with hearing disabilities to make private transportation arrangements by phone. Cruise ships and other large boats used for recreational purposes have made some progress in becoming accessible.

Airplane accessibility is required by the Air Carriers Access Act of 1986. Over the last decade, accessibility has increased. Today about 20 percent of aircraft are equipped with movable armrests on 50 percent of aisle seats. Cabin wheelchairs are now provided on most planes with more than 59 seats. Accessible lavatories are required on new twin-aisle aircraft. Despite progress, persistent problems remain, including untrained or poorly trained attendants and other airline personnel, lack of accessible public announcement systems on airplanes for people with hearing disabilities, lack of captioning for TV monitors and airport channels at airports, and possible limits on the recovery of attorneys' fees for lawsuits.

The most common form of transportation for Americans is the private automobile, particularly in rural areas. Many people with physical disabilities can drive an automobile if it is adapted to meet their individual needs. Veterans are eligible for a subsidy for automobile adaptations under veterans' benefits programs; however, there is no such subsidy for others with disabilities. Some car manufacturers will subsidize adaptations for customers up to a set amount (such as $1000).

Key Legislation in the Past Decade

The Air Carriers Access Act of 1986 (P.L. 99-435) prohibits discrimination against people with disabilities by air carriers.

The Americans with Disabilities Act of 1990 (P.L. 101-336) sets standards for the design and delivery of accessible bus service, specifies requirements for accessible rail service, establishes accessibility standards for vehicles and extends transportation access to the private sector.

The National Highway System Designation Act of 1995 (P.L. 104-59) amended ADA to change compliance dates to two and three years, respectively, after issuance of final DOT regulations for large and small over-the-road bus operators.

Recommendations

While the accessibility of public transportation has increased considerably in the last decade, numerous barriers remain. People with disabilities are far from being able to assume that the transportation they need will be accessible to and usable by them. Too often lifts on buses do not work or drivers will not operate lifts or call stops for people with visual impairments. Safety restraints for new-model wheelchairs are lacking and contrasts on steps for people with low vision are inadequate. People with hearing disabilities are frustrated by lack of communication access. Many people with disabilities do not live in areas served by public transportation and thus rely on private vehicles. Because of the additional expense of adapting a vehicle and the general low level of income of people with disabilities, buying a car may be difficult. Yet without a car, they are unable to get to a job or otherwise participate in community activities.

People with disabilities continue to confront discrimination on airlines. Lack of awareness of airline staff often contributes to problems. Sometimes people with disabilities are unaware of their rights in relation to airline travel and complain that DOT does little to enforce the Air Carriers Access Act.

General Public Transit Improvements

1. Federal, state and local governments should provide additional funding for public transit systems.

The level of access to public transportation for people with disabilities is directly related to the quality and expansiveness of the public transit system in general. Thus, the first step in enhancing access is improving public transit systems generally. Additional funding from the Federal Government should include both operating and capital funds, including flexible capital, in order to expand public transit in urban, suburban and rural areas, as well as tribal lands.

Enforcement of Current Law

2. DOT and relevant state and local government entities should aggressively enforce existing transportation statutes and regulations related to people with disabilities, by undertaking the following:

a) prompt referral of violators for appropriate action;

b) systematic solicitation and utilization of input from the disability community when making decisions regarding funding, enforcement, paratransit planning and time extensions;

c) ongoing meaningful public participation by people with disabilities in all projects and decisions of local transit agencies;

d) improving fixed-route service through full compliance with ADA requirements such as calling out stops, providing textual/visual (print or electronic) access for people with hearing disabilities, not moving the bus until the person is seated, picking up all disabled people rather than passing them by, clearing priority seating when needed by someone with a disability, curbing the bus so people can get on, improving drivers' attitudes and disciplining drivers who do not comply;

e) improved coordination by relevant entities to make bus stops more accessible, including removal of both permanent barriers and temporary barriers such as snow drifts;

f) ensuring compliance with ADA requirements (including eligibility and service area requirements), even if politically difficult, so that paratransit is available to those users with disabilities who will never be able to use fixed-route services;

g) ensuring that fixed-route information is provided in paratransit plans so these plans will constitute full ADA plans.

Rural Transportation

3. The Congress and the Federal Government should fund more accessible rural transit services for the general public and for people with disabilities, including intercity rail services.

Coordination

4. DOT, in conjunction with other relevant federal agencies such as the Department of Health and Human Services, should develop a mechanism and a process to facilitate coordination of transportation resources at the federal, state and local levels.

Many human services agencies buy vans to transport clients, including those with disabilities, to and from services. These agencies rarely coordinate with transportation entities that provide related transportation services, such as paratransit. Human services vans sometimes sit idly for extended periods of time, while people with disabilities in the same community have difficulty accessing public transportation. In addition, Section 9 and Section 18 transportation providers--generally urban and rural providers--are prohibited from picking up residents outside their designated areas, even though they may drive directly through adjacent areas while transporting someone. Coordination efforts should seek to eliminate inefficiencies such as these in current transportation systems by promoting initiatives such as agreements between urban and rural providers to pick up passengers in each other's areas when logical to do so.

In addition, there are many people residing in "gray areas," or areas served by neither urban nor rural transit. These are most often communities in urbanized areas that have not signed on with the regional transit system. However, the regional transportation provider's funding allocation includes the population residing in the unserved areas. Coordination should ensure that these people are served by some public transit system.

Communications Accessibility

5. DOT and DOJ should enhance enforcement of ADA and the Air Carriers Access Act and develop additional initiatives to ensure communications accessibility in transportation facilities, services and vehicles, as well as on streets and highways, including

a) improved signage for people with visual impairments;

b) calling out bus stops for people with visual impairments;

c) identifying which bus is on which route for people with visual impairments;

d) ensuring the provision of way-finding information in transit stations, such as detectable warnings;

e) ensuring the provision of visual (text) public announcement/paging systems that provide information on changes in times of departures or gates, seating upgrades, and weather or mechanical problems, and that call out bus or train stops;

f) ensuring captioning of TV/video programming in areas such as airplanes, cruise ships and terminal waiting areas;

g) ensuring accessible public phones (voice and TTY) that accept all forms of payment (including coins) in every phone bank within each concourse at airports, at highway stops, on street corners, and on airplanes and trains, and that connect with other phone systems, including providing access to 411, relay services and emergency numbers;

h) ensuring accessible courtesy/emergency phones (voice and TTY) for vans, hotels, car rentals, in-transit facilities, satellite parking, call boxes, etc.;

i) ensuring flashing and audible emergency alarms in facilities and vehicles;

j) ensuring that radio-based advisories have equivalent text-form communication;

k) providing for research into color contrast needs of people with visual impairments.

Training

6. DOT should require and fund training of transit agencies, people who provide transit services and people with disabilities about laws and practices affecting accessible transit.

Training for service providers should include disability awareness and should be standardized across the country but also tailored to the unique needs of the community. People with disabilities, including those with mobility, vision and hearing disabilities, should be involved in the design and delivery of the training. Training for people with disabilities should include training in their rights under the law, empowerment strategies to assist them in exercising their full rights, and orientation on how to use public transportation and making the most appropriate use of the modes of transit that are available to them.

Paratransit

7. DOT should enforce the paratransit provisions of ADA and local transit agencies should ensure that

a) eligibility for paratransit is uniform across all states and cities, including reciprocity from one locale to another;

b) eligibility is determined by a functional model, not a medical model;

c) trip-by-trip eligibility determination on the basis of comparable accessible public transit is an aspect of the process.

Motor Vehicle and Transit Design

8. The Society of Automotive Engineers and relevant federal agencies should incorporate accessibility features in safety and design standards and ensure compliance with ADA and Section 504 of the Rehabilitation Act for

a) automobiles, in order to promote usability by people with disabilities;

b) advanced car designs, such as electric cars, in order to provide audible and visual safety cues;

c) new "intelligent transportation systems" currently under development.

Highways and Streets

9. The Federal Highway Administration and other appropriate state and local agencies should ensure that highway call boxes are accessible and that traffic signals and poles show flashing lights when emergency vehicles are approaching.

Air Travel

10. DOT should improve access to air travel, particularly accessibility on airplanes, and, toward this end, should conduct research on ways to improve wheelchair storage, loading and service.

Issuance of Regulations and Standards

11. DOT and the Access Board should issue all pending disability civil rights regulations and standards in final form.

Let me note that Americans have never shied away from challenges. The fight for full participation by the world's 500 million people with disabilities is one we accept willingly and with enthusiasm....

Senator Robert Dole
Testimony before the Commission
on Security and Cooperation in Europe
September 21, 1994

[O]ur foreign aid dollars...should go toward building accessible, not inaccessible, structures and our technical assistance and bilateral aid should be inclusive of disabled persons. Foreign disability policy should reflect the American way.

Judith Heumann
Assistant Secretary
Department of Education
Testimony before the Commission
on Security and Cooperation in Europe
September 21, 1994

In all societies of the world there are still obstacles preventing persons with disabilities from exercising their rights and freedoms, making it difficult for them to participate fully in the activities of their societies. It is the responsibility of states to take appropriate action to remove such obstacles.

Standard Rules on the Equalization of
Opportunities for Persons with Disabilities
United Nations
1994

The world community should be as galvanized into working to see justice done for the disabled as it was to see apartheid ended. It is as much a moral issue as the struggle against apartheid ever was, and we must all take it up as a matter of religious and political conviction.

Desmond Tutu
Archbishop of Capetown, South Africa
Keynote address
Disabled Persons International World Assembly,
1994
Sydney, Australia

If ever an event should have provided full access for persons with disabilities, it is a UN conference in a forum devoted to human rights. There is no excuse for what happened here. And if I have any say in the matter, it will never happen again.

Madeleine Albright
U.S. Ambassador to the United Nations
Speaking at the Fourth World Conference on Women,
1995

There are about 500 million people with disabilities in the world, two-thirds of whom live in developing countries. Spurred by the growth of organizations founded and run by people with disabilities throughout the world, disability issues have continued to gain international momentum in the last decade. Organizations of people with disabilities have successfully influenced the way the international community views people with disabilities, shifting away from a medical orientation and toward an independent living orientation of personal empowerment.

The United States has one of the most progressive domestic disability rights policies in the world, yet it has not incorporated the goals and principles of that policy into its international role as the leader of the free world. U.S. participation in UN events related to disability rights has been perfunctory rather than dynamic. Other countries, such as those in Scandinavia, have adopted progressive resolutions inserting full participation and independent living for people with disabilities into their foreign policy.

The world was captivated by our country's adoption of the Americans with Disabilities Act (ADA). The law continues to serve as a model in countries everywhere. Ironically, the United States too often ignores the very tenets of the law in its international leadership role.

U.S. Foreign Policy

NCD has been designated by the Department of State as the contact point within the U.S. government for disability issues. U.S. foreign policy is administered primarily through three agencies: the Department of State, the Agency for International Development (AID) and the U.S. Information Agency (USIA). The U.S. government spends about $22 billion annually on thousands of international programs. However, people with disabilities are often excluded from participation in such programs by barriers or lack of outreach (NCD 1996).

The manner in which U.S. disability rights laws apply outside the United States is still being determined. Some applications, such as the employment provisions of ADA in relation to U.S. citizens working for U.S. companies abroad, clearly apply directly. Courts have yet to rule on the applicability of the Rehabilitation Act abroad. The manner in which the antidiscrimination mandate that applies to Federal Government activities in the U.S. applies to federally sponsored activities abroad continues to evolve. (NCD 1996).

Ensuring accessibility and accommodations in American embassies is important so that people with disabilities can work in them and use their services. People with disabilities seeking to enter the Foreign Service continue to encounter considerable barriers, including an extensive medical screening that may result in limitations on career opportunities.

AID distributes about $1.6 billion per year for economic assistance overseas, targeted to those at the lowest socioeconomic levels. Recent persistent efforts of the disability groups to ensure that people with disabilities benefit from AID programs have yielded a greater commitment by the agency to ensure that the principles of full participation and empowerment serve as underpinnings for AID programs. While some progress is evident, it has been slow and uneven and much remains to be done.

USIA operates educational and cultural foreign exchange programs, such as the Fulbright program. There is increasing evidence of the inclusion of people with disabilities in USIA programs, which is documented in annual reports by the agency. The agency is in the process of creating an accommodation policy.

The Peace Corps is the only U.S. international agency with a disability program area--special education. While the Peace Corps does place some volunteers with disabilities in other countries, there are limits on the extent to which it has accepted volunteers with disabilities.

Other countries have been more progressive than the United States in their international disability policies. For example, the Development Ministers of the Nordic Nations met in 1991 in Hanaholmen, Denmark, and adopted a resolution, known as the Hanaholmen Resolution, calling for the inclusion of disability issues as a core of the development activities of Nordic countries. Canada and the Nordic nations have funded disabled-directed organizations for years to conduct international development projects.

People with disabilities are rarely represented in official United States delegations to other countries. However, just recently this practice appears to be changing. The first official delegate with a disability was Marca Bristo, chair of NCD, to the World Summit on Social Development. The recent UN Conference on Women in Beijing, China, offered another notable exception. Judith Heumann, Assistant Secretary for Special Education and Rehabilitative Services of the Department of Education, was a delegate. In 1996, Marca Bristo was a U.S. delegate to Habitat II, the United Nations Conference on Human Settlements held in Istanbul, Turkey.

Recent increases in citizen diplomacy efforts by U.S. disability organizations to promote disability rights in other countries are having positive results.

Human Rights

The international disability community has had limited success in influencing the UN to ensure that people with disabilities are protected against human rights abuses. One significant event was the United Nations appointment of a Special Rapporteur on Human Rights and Disability by the Sub-commission on Prevention of Discrimination and Protection of Disability in 1984. The final report of the Rapporteur in 1991 clearly reflects the input of the disability community and documents the pervasive and persistent violations of the human rights of people with disabilities all over the world. Violations are civil and political in nature, as well as economic, social and cultural. The report recommended the establishment of an ombudsman's position to monitor human rights implementation for disabled persons; however, the recommendation has not been followed (Degener 1995).

Despite the fact that people with disabilities constitute the largest minority in the world with serious human rights violations, they are not acknowledged by the UN as a minority. Without such acknowledgment, there is no binding human rights instrument explicitly protecting their rights. A draft convention intended to eliminate discrimination against disabled people was rejected by the UN in 1987. However, in 1993 the General Assembly adopted the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (Standard Rules) intended to achieve full inclusion of people with disabilities in all aspects of society. The difference between the convention and the Standard Rules is that the Standard Rules are not legally binding (Degener 1995). The UN appointed Bengt Lindqvist as Special Rapporteur to monitor the implementation of the Standard Rules.

Over the years, the United Nations and other international entities (such as the International Labour Organization, the World Health Organization [WHO] and the United Nations Educational, Scientific, and Cultural Organization) have adopted numerous conventions, recommendations, declarations, principles and guidelines that relate to the rights of people with disabilities (Degener and Koster-Dreese 1995). The impact of these activities on the lives of people with disabilities throughout the world is not known.

In the early 1990s, the U.S. Congress directed the Secretary of State to expand human rights monitoring to include people with disabilities. To date, two reports, called Country Practice Reports on Human Rights, have been issued that include people with disabilities.

The World Bank

The World Bank recently developed a new methodology to assist ministers of health and development around the world to "better" determine how to allocate scarce health care and development dollars. "Disability-adjusted life years" (DALYs) statistically establish a measurement for the value of life lived with a disability. This methodology was devised with virtually no input from the disability community. DALYs appear to equate disability with lack of productivity and assume that investments in people with disabilities are poor investments (Groce 1996). Such methodologies are troubling to the disability community and fly in the face of the principles of ADA.

The International Classification of Impairments, Disabilities and Handicaps

In 1980, WHO developed a system called International Classification of Impairments, Disabilities and Handicaps (ICIDH) to classify and track disabilities and their impacts on people's lives. The system is used by many countries to gather data and plan for service delivery programs. WHO has undertaken a revision of ICIDH, in which the United States is actively participating. People with disabilities are participating in meetings and workshops all over the world to discuss the revision and promote a focus on social, physical and communications barriers that impede full participation. The revision of ICIDH is likely to be completed by the turn of the century. If used by the United States, the revised ICIDH will allow for comparative international data analysis.

Key Legislation in the Past Decade

The International Security and Development Cooperation Act of 1981 (P.L. 97-113) directs the Peace Corps to give particular attention to programs, projects and activities that integrate people with disabilities into national economies.

In 1993 and 1994 a number of legislative directives were included in various foreign aid and foreign operations bills with provisions such as requiring the Secretary of State to include reporting on people with disabilities in County Practice Reports on Human Rights.

The Foreign Relations Authorization Act for FY 94 and FY 95 (P.L. 103-236) directs USIA to issue an annual report on agency efforts to promote the inclusion of people with disabilities in the general exchange activities of the agency and also requires exchanges specific to people with disabilities.

Recommendations

The accomplishments of the United States in the international disability policy arena are modest to date. The size of the population of people with disabilities throughout the world--500 million people--warrants a more substantial response from the United States. Indeed, we lag behind some other industrialized democracies in our outreach, development and international leadership. Developing the capacity of people with disabilities as leaders in their communities is vital to U.S. global interests.

Human and Civil Rights

1. The President and the Congress should ensure that all aspects of U.S. foreign policy and assistance recognize the individual human rights and civil rights of people with disabilities, reflecting current U.S. policy as articulated in ADA by

a) requiring full accessibility of all programs, activities, services and facilities of governmental and nongovernmental entities involved with international activities;

b) promoting the principles of ADA throughout all aspects of international operations of U.S. companies;

c) enforcing full accessibility as required by ADA and Section 504 of the Rehabilitation Act in U.S. embassies, consular offices and U.S. AID missions;

d) prohibiting the exclusion of people on the basis of disability in immigration policy;

e) collecting and reporting data on the demographics and the status of people with disabilities in U.S. government-generated country reports.

Foreign Assistance

2. The President and the Congress should develop initiatives to provide U.S. foreign assistance for programs that will strengthen and empower disability-directed organizations in other countries through exchanges, technical assistance, in-depth training, networking and funding, including the following:

a) technical assistance that enables people with disabilities to share information, resources and strategies, including, as appropriate, technology and in-depth training through bilateral and multilateral programs provided by disability-directed organizations;

b) translation of ADA and other disability rights legislation in a range of languages and accessible formats;

c) a directory of consultants with expertise in international disability programs and policies;

d) a comprehensive resource directory of disability-directed organizations in countries throughout the world.

Social and Economic Development

3. As a part of global economic and social development policy, the Congress and the President should develop initiatives to encourage the International Monetary Fund, the World Bank and other international entities to promote activities such as microenterprise development, business development credit, business development loans, inclusive education for children with disabilities, and public health initiatives for people with disabilities.

Inclusion of People with Disabilities

4. The President and the Congress should develop initiatives to ensure the inclusion of people with disabilities in all aspects of U.S. foreign policy and assistance, including

a) the participation of people with disabilities in the design, implementation and evaluation of program areas, utilizing participatory action research methodology;

b) requiring federal grantees to demonstrate how projects and activities will include people with disabilities as beneficiaries;

c) use of the extent to which people with disabilities are included in federal grants as a basis for evaluation of grants;

d) access to and inclusion of women and girls with disabilities in development projects serving women and girls;

e) hiring of people with disabilities at all levels of domestic and international operations by U.S. government agencies and nongovernmental organizations handling international activities;

f) hiring of people with disabilities by subcontractors assisting the U.S. government in international development projects;

g) internships sponsored by governmental, nonprofit and profit-making sectors to train people with disabilities in international issues;

h) presidential appointments of people with disabilities in foreign assistance and foreign policy arenas.

International Exchange Programs

5. The Congress and the administration should develop initiatives to increase the number of people with disabilities in all types of international educational exchange programs sponsored by the government and the for-profit and nonprofit private sectors, including

a) the Peace Corps;

b) international delegations such as international visitor programs, the world affairs council, and escort programs;

c) cultural exchange programs;

d) sports exchanges;

e) exchanges by U.S. independent living programs with similar disability-directed groups in other countries, with particular attention to developing countries;

f) leadership training;

g) youth, high school and university exchanges;

h) volunteer, intern and work-related exchanges;

i) family-to-family exchanges;

j) teacher and other disability-related professional exchanges;

k) international conferences;

l) business development exchanges for youth, such as Junior Achievement;

m) professional business delegation exchanges, such as those sponsored by the Department of Commerce.

I wish I could say that America has come to appreciate diversity and to see and accept similarity. But as I look around, I see not a nation of unity, but of division....We cannot play ostrich. Democracy cannot flourish amid fear. Liberty cannot bloom amid hate. Justice cannot take root amid rage. We must go against the prevailing wind. We must dissent from indifference. We must dissent from apathy....We must dissent because America can do better, because America has no choice but to do better.

Thurgood Marshall
Supreme Court Justice
July 4, 1992

Human progress is neither automatic nor inevitable. Even a superficial look at history reveals that no social advance rolls in on the wheels of inevitability. Every step toward the goal of justice requires sacrifice, suffering, and struggle, the tireless exertions and passionate concern of dedicated individuals.

Dr. Martin Luther King, Jr.

The recommendations in this report are intended to provide direction for public policy in order to facilitate the achievement of independence by people with disabilities. Many recommendations are long-term and will require a sustained collaborative effort by federal agencies and the Congress. The achievement of independence demands concerted efforts by virtually all sectors of society--state and local governments, the nonprofit and for-profit private sectors, the disability community, and others. NCD is committed to working with all relevant parties to implement these recommendations in a timely and effective manner.

American Association of Retired Persons (AARP) Public Policy Institute. 1994. The Cost of Long Term Care. Washington, DC: Author.

American Association of Retired Persons (AARP) Public Policy Institute. 1995. Long Term Care. Washington, DC: Author.

Blanck, P. 1991. The emerging work force: Empirical study of the Americans with Disabilities Act. Journal of Corporation Law, 16:693-801.

Blanck, P. 1994a. Communicating the Americans with Disabilities Act Transcending Compliance: A Case Report on Sears, Roebuck and Co. Washington, DC: The Annenberg Washington Program.

Blanck, P. 1994b. Employment integration, economic opportunity and the ADA: Empirical Study 1990-1993. Iowa Law Review; 79(4).

Bowe, F. 1992. Adults with Disabilities: A Portrait. Washington, DC: President's Committee on Employment of People with Disabilities.

Braddock, D. and Bachelder, L. 1994. The Glass Ceiling and Persons with Disabilities. Washington, DC: U.S. Department of Labor.

Braddock, D.; Hemp, R.; Bachelder, L.; and Fujiura, G. 1995. The State of the States in Developmental Disabilities. Washington, DC: American Association on Mental Retardation.

Burkhauser, R., Butler, J. S.; and Kim, Y. W. 1994. The Importance of Employer Accommodation on the Job Duration of Health Impaired Workers: A Hazard Model Approach. Syracuse, NY: Syracuse University.

Center for Universal Design, North Carolina State University, n.d. Definitions: Accessible, Adaptable, and Universal Design. Raleigh, NC: Author.

Cooley, S. 1995. (November 22). Suspension/Expulsion of Regular and Special Education Students in Kansas: A Report to the Kansas State Board of Education. Topeka: Kansas State Board of Education.

Daly, M. C., and Bound, J. 1994. Worker Adaptation and Employer Accommodation Following the Onset of a Health Impairment. Syracuse, NY: Syracuse University.

Degener, T. 1995. Disabled persons and human rights: The legal framework. In T. Degener and Y. Koster-Dreese, eds. Human Rights and Disabled Persons: Essays and Relevant Human Rights Instruments. Dordrecht: Martinus Nijhoff Publishers.

Degener, T., and Koster-Dreese, Y., eds. 1995. Human Rights and Disabled Persons: Essays and Relevant Human Rights Instruments. Dordrecht: Martinus Nijhoff Publishers.

DeJong, G. 1979. The Movement for Independent Living: Origins, Ideology and Implications for Disability Research. East Lansing, MI. Michigan State University.

DeJong, G. 1995. Income Assistance, Cash Benefits and Work: The Vital Role of Health Care and Personal Assistance. Washington, DC: National Academy of Social Insurance.

Disability Rights Education Defense Fund (DREDF). 1981. Disability Rights: From Caste to Class--the Humanization of Disabled People. Berkeley, CA: Author.

Gallagher, H. G. 1995. (September 7). Can we afford disabled people? The 14th Annual James C. Hemphill Lecture. Chicago: Rehabilitation Institute of Chicago.

Galvin, J. 1995. Consumer-responsiveness in assistive technology service delivery. In Technology and People with Disabilities (draft). Washington, DC: U.S. Congress, Office of Technology Assessment.

Gill, C. 1995. A psychological view of disability culture. Disability Studies Quarterly, 15(4):16-19.

Gostin, L., Beyer, H. 1993. Implementing the Americans with Disabilities Act: Rights and Responsibilities for All Americans. Baltimore, MD: Paul H. Brookes Publishing Co.

Groce, N. 1996. Emerging issues in disability studies: Monitoring the World Bank. Disability Studies Quarterly, 16(1):14-18.

Lachat, M. 1988. The Independent Living Service Model: Historical Roots, Core Elements and Current Practices. Hampton, NH: Center for Resource Management.

LaPlante, M. 1991. The Demographics of disability. Milbank Quarterly, 69(Suppl. 1):55-77.

LaPlante, M. 1995a. Disability Demographics. In Technology and People with Disabilities (draft). Washington, DC: U.S. Congress, Office of Technology Assessment.

LaPlante, M. 1995b. Disability in the United States: Prevalence and Causes, 1992. Washington, DC: National Institute on Disability and Rehabilitation Research.

LaPlante, M. and Carlson, D. 1995. Disability in the United States: Prevalence and Causes, 1992 (draft). Washington, DC: National Institute on Disability and Rehabilitation Research, Disability Statistics Rehabilitation Research and Training Center.

LaPlante, M.; Kennedy, J.; Kaye, H.; and Wenger, B. 1996. Disability and Employment. Disability Statistics Abstract No. 11. Washington, DC: National Institute on Disability and Rehabilitation Research.

Lauber, D. 1986. Impacts on the Surrounding Neighborhood of Group Homes for Persons with Developmental Disabilities. Chicago, IL: Governor's Planning Council on Developmental Disabilities.

Lewin-VHI, Inc. 1995. An Exploratory Study of Barriers and Incentives to Improving Labor Force Participation Among Persons with Significant Disabilities. Washington, DC: U.S. Department of Health and Human Services.

Litvak, S. 1991a. Size and Characteristics of the PAS User Population. Oakland, CA: World Institute on Disability.

Litvak, S. 1991b. State and federal funding sources for PAS. In Personal Assistance Services: A Guide to Policy and Action. Oakland, CA: World Institute on Disability.

Litvak, S., Heumann, J., and Zukas, H. 1987. Attending to America: Personal Assistance for Independent Living: a Report of the National Survey of Attendant Services Programs in the United States. Oakland, CA: World Institute on Disability.

Lou Harris and Associates. 1986a. Harris Survey on Employment of People with Disabilities. New York: Author.

Lou Harris and Associates. 1986b. ICD Survey of Americans with Disabilities. New York: Author.

Lou Harris and Associates. 1994. N.O.D./Harris Survey of Americans with Disabilities. New York: Author.

Lou Harris and Associates. 1995. The NOD/Harris Survey on Employment of People with Disabilities. New York: Author.

Educators find data hard to come by in discipline debate. 1995. LRP Publications, 11(3):7-8.

Mank, D. In press. The underachievement of supported employment: A call for reinvestment. Journal of Disability Policy Studies, 5(2).

Mayerson, A. 1982. Brief of Amicus Curiae, Consolidated Rail Corporation vs. Lee Ann LeStrange Darrone. Berkeley, CA: Disability Rights Education Defense Fund.

McNeil, J. 1993. Americans with Disabilities: 1991-92. Data From the Survey of Income and Program Participation. Washington, DC: U.S. Department of Commerce, Bureau of the Census.

McNeil, J. 1995. (May 10) Memo. Washington, DC: U.S. Department of Commerce, Bureau of the Census.

Minnesota Department of Children, Families and Learning. 1996. Report on Suspensions and Expulsions. Minneapolis: Author.

National Council on Disability (NCD). 1993a. Assistive Technology Devices and Services for Individuals with Disabilities. Washington, DC: Author.

National Council on Disability (NCD). 1993b. Meeting the Unique Needs of Minorities with Disabilities. Washington, DC: Author.

National Council on Disability. 1995a. Disability Perspectives and Recommendations on Proposals to Reform the Medicaid and Medicare Programs. Washington, DC: Author.

National Council on Disability. 1995b. Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America's Children. Washington, DC: Author.

National Council on Disability (NCD). 1995c. Voices of Freedom: America Speaks Out on the ADA. A Report to the President and Congress. Washington, DC: Author.

National Council on Disability. 1996a. Access to the NII and Emerging Information Technologies by People with Disabilities. Washington, DC: Author.

National Council on Disability. 1996b. Foreign Policy and Disability. Washington, DC: Author.

National Early Childhood Technical Assistance System. 1995a. Assisting Our Nation's Preschool Children with Disabilities and Their Families: A Briefing Paper on Section 619 of Part B of the Individuals with Disabilities Education Act, 1986-1995. Washington, DC: U.S. Department of Education, Office of Special Education Programs.

National Early Childhood Technical Assistance System. 1995b. Helping Our Nation's Infants and Toddlers with Disabilities and Their Families. A Briefing Paper on Part H of the Individuals with Disabilities Education Act 1986-1995. Washington, DC: U.S. Department of Education, Office of Special Education Programs.

National Organization on Disability. 1996. Disability Vote Over 35 Million Americans Change Election Outcome. Washington, DC: Author.

President's Committee on Employment of People with Disabilities (PCEPD). 1994. Operation People First. Washington, DC: Author.

President's Committee on Employment of People with Disabilities (PCEPD). 1995. ADA Survey by Global Strategy Group, Inc. Washington DC: Author.

Project Action. 1995. 1995 ADA Paratransit Updates. Washington, DC: National Easter Seal Society.

Prouty, R., and Lakin, C. 1995. (June) Residential Service for Persons with Developmental Disabilities: Status and Trends Through 1994. Report No. 46. Minneapolis: University of Minnesota, Research and Training Center on Community Living.

Schaffer, D. 1991. Tax incentives. In J. West, ed. The Americans with Disabilities Act: From Policy to Practice. New York: Milbank Memorial Fund.

Scully, D.; Snow, K.; Riley, T. 1995. Coordinating Services with and for Persons with Disabilities: A Challenge for State Government. Portland, ME: National Academy for State Health Policy.

Seelman, K. 1993. Assistive technology policy: a road to independence for individuals with disabilities. Journal of Social Issues, 49(2):115-136.

Shapiro, J. 1993a. No Pity. New York: Random House.

Shapiro, J. 1993b. Separate and unequal. Newsweek, December 13, 46-60.

Smith, G., and Gettings, R. 1994. (October) The HCB Waiver and CSLA Programs: An Update on Medicaid's Role in Supporting People with Developmental Disabilities in the Community. Alexandria, VA: National Association of State Directors of Developmental Disabilities Services.

Smith, Q.; Frieden, L.; and Richards, L. 1995. Independent living, In Encyclopedia of Disability and Rehabilitation, (pp. 399-406). New York: MacMillan Publishing Co.

SRI International. 1993. (December 9) The Transition Experiences of Young People with Disabilities: Implications for Policy and Programs. Menlo Park, CA: Author.

Svaldi, A. Program for disabled nets bank honors. Denver Business Journal, May 19-25 1995, 5A.

U.S. Department of Education (DOED) 1993. The Transition Experiences of Young People with Disabilities. Washington, DC: Author.

U.S. Department of Education (DOED). 1994. Sixteenth Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act. Washington, DC: Author.

U.S. Department of Education (DOED). 1995a. Individuals with Disabilities Education Act Amendments of 1995: Reauthorization of the Individuals with Disabilities Education Act. Washington, DC: Author.

U.S. Department of Education (DOED). 1995b. Seventeenth Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act. Washington, DC: Author.

U.S. Department of Housing and Urban Development (HUD). 1994. Worst Case Needs for Housing Assistance in the United States in 1990 and 1991: A Report to Congress. Washington, DC: Author.

U.S. General Accounting Office. 1994. (June) Americans with Disabilities Act: Effects of the Law on Access to Goods and Services. Washington, DC: Author.

West, J., ed. 1991. The Americans with Disabilities Act From Policy to Practice. New York: Milbank Memorial Fund.

West, J. 1995a. The Americans with Disabilities Act: Taking stock and looking to the future In Civil Rights Journal of the U.S. Commission on Civil Rights, 1(1):42-47.

West, J. 1995b. Federal Implementation of the Americans with Disabilities Act, 1991-1994. New York: Milbank Memorial Fund.

West, J., ed. 1996. Implementing the Americans with Disabilities Act. Boston: Blackwell Publishers and Milbank Memorial Fund.

Whyte, J. 1995. Participatory Action Research. Paper presented at the NIDRR Director's Meeting. Washington, DC: National Institute on Disability and Rehabilitation Research.

Wilner, M. A. 1994. Fix It. Raleigh, NC: Center for Accessible Housing.

World Institute on Disability and Rutgers University Bureau of Economic Research. 1990. The Need for Personal Assistance. Oakland, CA: World Institute on Disability.

Yelin, E. 1991. The recent history and immediate future of employment among persons with disabilities. In J. West, ed. The Americans with Disabilities Act: From policy to practice, (pp. 129-149). New York: Milbank Memorial Fund.

Yelin, E. 1993. Personal correspondence cited in Lewin-VHI, Inc. 1995. An Exploratory Study of Barriers and Incentives to Improving Labor Force Participation among

Persons with Significant Disabilities. Washington, DC:U.S. Department of Health and Human Services.

Yelin, E. 1996. Personal communication. Analysis of 1995 Current Population Survey--March Supplement.

Yelin, E., and Katz P. 1994. Labor force trends among persons with and without disabilities. Monthly Labor Review, 17(10):36-42.

RECOMMENDATIONS FOR THE NATIONAL COUNCIL ON DISABILITY

The following are recommendations provided by the policy working groups at the National Summit on Disability Policy in Dallas in April 1996. They are recommendations for activities that Summit participants would like to see undertaken by NCD.

Policy and Program Coordination

1. With appropriate funding from the Congress, NCD should continue to develop initiatives to identify and work toward elimination of contradictory and conflicting laws, regulations and programs. NCD should promote coordination and commonality of goals across agencies, both those that are specifically targeted to people with disabilities and those that are not specifically so targeted.

2. With adequate funding from the Congress, NCD should work with other relevant federal agencies to develop strategies will result in greater enforcement of existing laws that affect people with disabilities that are consistent with the philosophy of ADA. These laws include Section 504 of the Rehabilitation Act, the Air Carriers Access Act, the Fair Housing Act Amendments and the Motor Voter Act.

3. NCD should develop and propose to Congress a model to achieve a seamless delivery system of benefits, supports and services for people with disabilities. The principles for the model include

a) full participation by people with disabilities as program designers, qualified employees and service recipients;

b) maximal opportunities for choice and control by people with disabilities;

c) service eligibility based on individual need;

d) provision of services regardless of age, ethnicity, type of disability or geographic region;

e) recognition of individuals' changing needs over time;

f) regular evaluation of the services, ensured by obtaining consumer opinion and measuring outcomes;

g) confidentiality;

h) common data, definitions and forms;

i) reduction of resources spent on intake and eligibility determination;

j) clear delineation of federal, state, local and tribal roles and responsibilities;

k) provisions requiring all levels of government to abide by these responsibilities.

4. NCD should develop principles to guide Congress in a) establishing a policy that people with disabilities and their families will control the resources necessary to obtain services/supports of their choice and b) hold states accountable for implementing policy.

5. NCD should hold a summit/conference to identify methods to alter federal funding mechanisms to reward excellence and innovation in programs that affect people with disabilities.

These methods should build on connections with existing quality improvement/reinventing government initiatives and focus on consumer satisfaction.

6. NCD should continue to promote and facilitate communication across disabilities and between policy makers and the grass roots.

These efforts should be coordinated with other national leaders from entities such as the National Council on Independent Living (NCIL), the President's Committee of People with Disabilities (PCEPD) and state governors' committees. NCD should hold annual or biannual policy summits to continuously refine our national policies and have an opportunity to take up emerging issues in a timely manner. Existing and emerging computer technology should be used to promote timely sharing of information to broad audiences.

7. NCD should develop and implement a strategy to educate the philanthropic community about the disability rights philosophy and goals and work to shift their funding to support that philosophy and those goals.

8. NCD should continue to invest in developing the next generation of leaders with disabilities by

a) compiling resources;

b) including youth events in national conferences;

c) developing a task force to develop a plan for coordination with national organizations, exploring mentorship opportunities and coordinating with youth organizations;

d) reinstituting NCD fellowship programs; and

e) encouraging federal agencies, international exchange organizations and other agencies and organizations to include youth with disabilities in their internship programs and events.

9. NCD should provide an exemplary model of accommodating people with disabilities to the rest of the nation in the ways in which it conducts its own business.

In cooperation with the PCEPD and NCIL, NCD could develop the capacity needed to run truly universally accessible conferences. With this capacity, NCD could provide training and technical assistance to other organizations on conducting universally accessible conferences and events.

In order to make conferences truly accessible, new technology will likely need to be developed. For example, without a braille printer available it is not possible for blind participants to have the same access to recently developed or up-to-date conference materials.

Civil Rights

10. NCD should seek to develop additional enforcement strategies for ADA beyond litigation and other current strategies.

11. NCD should regularly convene national forums to develop strategies to guide enforcement of civil rights laws.

12. NCD should work with the American Bar Association to encourage attorneys to undertake pro bono disability rights cases.

13. NCD should work with other relevant federal agencies to develop mechanisms to ensure that regulations and proposed regulations that affect people with disabilities are communicated to the communities that will be affected by them.

14. NCD, or a consumers-controlled task force, should develop standards for required education and training of all federal agencies and recipients of federal funds. NCD, or the task force, should monitor compliance with the training requirement.

15. NCD should celebrate the anniversary of the enactment of ADA by launching a "Barrier Buster Campaign" that would yield a report card on the status of America's accessibility.

16. NCD should develop a task force to consider and determine strategies to address managed care as it affects people with disabilities.

17. NCD should undertake research on the development and management of sign language interpreter resources.

Health Insurance and Health Care

18. NCD should assemble an advisory committee to work with DOJ to develop regulations for ADA and the Rehabilitation Act that clarify how disability discrimination laws apply to private health insurance companies and health plans as public accommodations (Title III), instrumentalities of state and local governments (Title II), federal contractors (Section 503), and recipients of federal funds (Section 504).

19. NCD should develop a direct working relationship with the disability-related institutes at the National Institutes of Health to ensure that the views of Americans with disabilities guide and support NIH policies and funding.

International Issues

20. NCD should explore ways to utilize the expertise, resources and skills that have been developed in the context of international development and technical assistance to persons with disabilities and make them available to Native American populations.

21. NCD should promote the development of a curriculum on international disability policy issues which should be an integral part of postsecondary programs with an international focus.

22. NCD should provide leadership to enforce full accessibility as defined by Section 504 of the Rehabilitation Act in U.S. embassies, consular offices and U.S. AID missions.

Multiple Chemical Sensitivities

23. NCD should catalyze action on multiple chemical sensitivities in the appropriate federal agencies to expand and enhance the rights of those with these disabilities.

24. NCD should engage in and urge Congressional authorization and funding for a comprehensive education, research and policy development agenda to address multiple chemical sensitivities and related disabilities.

EMERGING ISSUES

The following are brief summaries of the "emerging issues" group meetings held during the National Summit on Disability Policy. Issues that were beyond the scope of the 11 policy areas or that required further exploration were identified by Summit participants who then formed groups to discuss them. Summit participants were free to attend any group meeting they chose.

Multiple Chemical Sensitivities
Discussion led by Mary Lamielle

Decision makers are generally unaware of the disability called multiple chemical sensitivities and lack information about the chemical and environmental barriers that preclude access and accommodations for people with this disability. Most people with this disability find it difficult to achieve a reasonable quality of life because, owing to environmental exposures, they are frequently denied access and accommodations in the most basic and essential areas of their lives, including housing, employment, and education, and in their efforts to secure basic goods and services. The nature of these barriers and their impact on this population must be integrated into any policy response to this disability.

Complementary Medicine
Discussion led by Anne Seggerman

Complementary medicine and therapies include centuries-old treatments such as acupuncture, herbal medicine, chiropractic treatment, homeopathy, and European and Asian traditional medicine. A 1993 study reported that one in three U.S. citizens use complementary therapies, and a majority of these people do not inform their primary care physician.

The value of complementary medicine is widely known in the prevention of secondary disabilities. As the availability and benefits of complementary medicine become more widely known, more people will become advocates and users of these therapies. Complementary medicine has the potential to enhance the quality of life and, according to people who use these therapies, can save lives when orthodox medicine is not effective.

Native Americans
Discussion led by Ela Yazzie-King

Representatives from different tribal nations attended this meeting. Each tribal government has its own unique structure and there is no uniformity in attitudes toward Native Americans with disabilities, their treatment or their rights. It appears that the ADA does not cover Native Americans if they choose to live in tribal lands. Each tribal government has its own rules and regulations. Services provided by the Indian Health Service are frequently minimal. However, the climate is generally positive toward more inclusive services for Native Americans with disabilities.

Cross-over Between Health Care and Long-Term Services
Discussion led by Bob Griss

Cost containment strategies of managed care plans may be based on reducing utilization or increasing economies of scale, both of which are incompatible with consumer-directed services. The danger is that managed care plans will be attracted to combining acute and long-term services by the higher capitation payment that long-term services would bring. Some advocates of specialized managed care believe that nonprofit specialized providers might be more sensitive to the ideology of consumer-directed services. Critics of managed care believe equally strongly that nonprofit providers will be forced to resort to reductions in utilization or increases in economies of scale by the competitive process or the shrinking of public payments, especially in specialized Medicaid-only managed care plans. There are very few managed care plans that currently combine acute and long-term services. In states where this is being tried (as in Minnesota) the managed care plan has attempted to replace consumer-directed personal assistance services with a contract to a Medicare-certified home health agency. If long-term services are combined with acute care, both may be overly medicalized; if they remain separate, coordination problems will remain. Ideally, long-term services should be structured to wrap around the limitations of the acute care benefit. Both the problem of overmedicalization and the problem of coordination have been overshadowed by political strategies to protect existing Medicaid dollars for persons who have been benefiting from them.

Targeted vs. Integrated Managed Care
Discussion led by Peter Thomas

One of the most contentious disability issues in the health policy arena concerns the manner in which managed care plans, particularly capitated arrangements, should be compensated for high users of care (e.g., people with disabilities who are ill and have chronic conditions). Because capitation relies on a set payment for a person's entire care, people with disabilities often experience underservice in these types of managed care plans. Risk adjustment mechanisms would resolve much of this problem but reliable risk adjustment is still in its infancy. An alternative, which has begun to appear in Medicaid programs across the country, is to "carveout" certain populations that have frequent or ongoing specialized health care needs. Other alternatives include carveouts in which health plans would be responsible for all of the specialized health needs of a population but would receive extra payments for such care.

Targeted approaches to the care of people with disabilities may lead to further segmentation of the market. Such targeting is dangerous because, over the long-term, it could damage cross-subsidization, which enables high users of care to have their needs met. On the other hand, capitated systems were not designed for people with extensive or ongoing specialized services; therefore, targeted approaches offer the promise of ensuring appropriate health care for people with disabilities. People with disabilities must study the existing programs that utilize targeted approaches and take a position before these programs proliferate. The U.S. Health Care Financing Administration should consider the potential implications of targeted managed care programs, before investing in such programs, which could have a long-term detrimental impact on people with disabilities.

Research
Discussion led by Mitch LaPlante

Disability-related research and data collection have yet to be driven by the values of the ADA. Questions asked on surveys often reflect a medical model rather than an independent living model. Data collection and analysis efforts of the Federal Government are lacking in comparison to other protected groups, such as women and African-Americans. The economic assumptions that are implied in typical cost-benefit analysis need to be re-evaluated in light of the new disability paradigm embodied by ADA. There are too few researchers who are people with disabilities.

Disability Culture
Discussion led by Bruce Curtis

People with disabilities...share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives, our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities.

Steve Brown
Institute on Disability Culture
1996

People who attended this session were interested in exploring the existence and nature of disability culture. They began by affirming that the concept of a disability culture is a positive, proactive proclamation of pride. The arts and culture are crucial to the identity of all humans. Participants concluded that pursuit of mainstream inclusion and development of a unique disability culture were not incompatible.

Disability culture exists because people with disabilities share common experiences, such as physical and mental rehabilitation, oppression, discrimination, and civil rights demonstrations. Disability culture has artifacts, rituals, humor, and history, as well as shared experience. It can foster self-pride, self-advocacy, and community organizing.

People who share disability culture also belong to other affinity groups or cultures. Women, gay men and lesbians and people with religious and ethnic affiliations enrich disability culture with their diverse experiences. Parents of children with disabilities also share part of a disability cultural identity.

Disability art adds the particular life experience of the disabled person to the artistic statement, taking the art form in a new direction and redefining it. Disability culture is a direct reflection of the life struggle of disabled people.

It is important to collect, archive and disseminate information about the history of the disability community and the development of disability culture. People with disabilities, particularly young persons with disabilities, will benefit from knowing about the struggles and successes of the disability community, including the identity of role models. Disability history and culture should be part of high school and university curricula.

Physician-Assisted Suicide
Discussion led by Diane Coleman

Physician-assisted suicide has recently been declared a constitutional right in the second and sixth Court Circuits--thereby affecting 12 states. Some participants in this discussion believed that individuals should have a right to assisted suicide, such as by lethal injection. Others, however, felt that the risk of abuse against people with disabilities is too great to condone such a practice.

Genetics Issues
Discussion led by Gina McDonald

The group expressed serious concern that many professional genetics counselors do not have enough knowledge about disability rights and pride to counteract the negative public reaction to the possibility of a baby's being born with a disability. Many counselors are overly cautious, tending to err on the side of telling prospective parents that they are likely to have a child with a disability.

The group called for training for all genetics counselors about disability rights, disability pride, and