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.

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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 specific knowledge of possible quality-of-life outcomes for specific disabilities. Statistical information about the frequency of disability under various circumstances should be readily available. Parents who are told that there is a possibility of having a disabled child should be referred to community resources such as Centers for Independent Living and Parent Training Centers. The group noted that laws requiring that all fetuses be treated equally should be strongly enforced.

NATIONAL SUMMIT ON DISABILITY POLICY PARTICIPANTS

Jessica Aaron
Stanford, CA

Laurie Ahern
Lawrence, MA

Zully Alvarado
Chicago, IL

Linda Anthony
Harrisburg, PA

Warren Asher
Washington, DC

Bobbie Atkins
San Diego, CA

Mason Barney
Brunswick, ME

Richard Baron
Philadelphia, PA

Alberto Barrera
Chicago, IL

Betsy Bayha
Oakland, CA

Patricia Beattie
Alexandria, VA

Allan Bergman
Washington, DC

David Bermis
Chattanooga, TN

Barry Bernstein
Marshfield, VA

James Billy
New York, NY

Nancy Bloch
Silver Spring, MD

Mike Boyd
Point Richmond, CA

Barbara Brauer
Washington, DC

Dave Brown
Olympia, WA

Suzanne Bruyere
Ithaca, NY

Gerry Buckley
Rochester, NY

Barbara Burch
Lauderdale By the Sea, FL

Bob Bureau
Brattleboro, VT

H. Thomas Byron
Washington, DC

Belinda Carlton
Austin, TX

Dennis Celorie
Sarasota, FL

Carl Champ
Beckley, WV

Regina Chavez
Boston, MA

Gene Chelberg
Minneapolis, MN

Margaret Chmielewski
East Lansing, MI

Bill Chrisner
Pittsburgh, PA

Julie Clay
Flagstaff, AZ

Diane Coleman
Oak Park, IL

Bob Cooper
Providence, RI

Anthony Cordova
Augusta, GA

Vanessa Coveau
Fremont, CA

Jerry Crum
Carson City, NV

Bruce Curtis
Oakland, CA

Justin Dart
Washington, DC

Robert Davila
White Plains, NY

Lonnie Davis
Seattle, WA

Randy Davis
Washington, DC

Deborah Dee
St. Louis, MO

Gerben DeJong
Washington, DC

Berthy De La Rose-Aponte
Cooper City, FL

Adolfo Diaz
Miami, FL

Jim Dickson
Washington, DC

Kurt Dreschler
Dallas, TX

Yvonne Duffy
Ann Arbor, MI

Ed Duggan
Baltimore, MD

Nancy Duncan
Chamblee, GA

Ethan Ellis
Trenton, NJ

Robert Enteen
New York, NY

Sarah Everhart
Washington, DC

Darrell Farland
Bismarck, ND

Fred Fay
Concord, MA

Ann Ford
Lombard, IL

Duane French
Juneau, AK

Darlene Fust
Baton Rouge, LA

Nellie Kate Gainer
Atlanta, GA

Donald Galloway
Washington, DC

David Gettys
Columbia, SC

Leslie Gilbert
Eugene, OR

Grant Gill
North Bend, OR

Ray Glazier
Cambridge, MA

Penny Godwin-Crawley
East Lansing, MI

Stephen Gold
Philadelphia, PA

Marilyn Golden
Oakland, CA

Harvey Goodstein
Silver Spring, MD

Ed Graves
Arlington, VA

Charlene Green
Chicago, IL

Kelly Greene
Miami, FL

Bob Griss
Washington, DC

Harlan Hahn
Santa Monica, CA

Cynthia Harton
Newton, NC

Steve Harris
Green River, WY

Wilbur Hawke
Marco Island, FL

Marlene Hayes
Covington, KY

Scott Haynes
Austin, TX

Robert Herman
Washington, DC

Iliana Hernandez
Miami, FL

Miriam Hertz
Waltham, MA

Sue Hodges
Oakland, CA

Mike Hoenig
Iowa City, IA

Rachel Holland
Sacramento, CA

Robert Holland
Sacramento, CA

Elizabeth Hollowell
Virginia Beach, VA

Maureen Hollowell
Norfolk, VA

Pamela Holmes
Madison, WI

Marylyn Howe
Boston, MA

Marchell Hunt
Indianapolis, IN

Margot Imdieke
St. Paul, MN

Andy Imparato
Washington, DC

Dorothy Jackson
Miami, FL

Jane Jackson
Oakland, CA

Samuel Jackson
Miami, FL

Shelley Jackson
Washington, DC

Cassie James
Philadelphia, PA

Stephen Janick
Long Branch, NJ

Debra Johnson
Boise, IA

Mack Nez Johnson
Reno, NV

Sally Johnston
Syracuse, NY

Henrietta Jordan
Montpelier, VT

Mick Joyce
Madison, WI

Bob Kafka
Austin, TX

June Isaacson Kailes
Playa del Rey, CA

Deborah Kaplan
Oakland, CA

Jerry Kendall
Citga, IL

Dan Kessler
Birmingham, AL

William Kiernan
Boston, MA

Robert Kilbury
Springfield, IL

Carl Kirchner
Burbank, CA

Corrine Kirchner
New York, NY

Kathleen Kleinmann
Washington, PA

Barbara Knowlen
Minneapolis, MN

Tim Kolb
Franklin, NE

Helen Kutz
Oklahoma City, OK

Mary Lamielle
Voorhees, NJ

Kristian Lane
Berkeley, CA

Rebecca Lanett
Chicago, IL

Mitchell LaPlante
San Francisco, CA

Barbara LeRoy
Detroit, MI

Deborah Lisi-Baker
Waterbury, VT

Simi Litvak
Oakland, CA

Jennifer Logan
Rosebud, SD

Pam Lloyd
Decatur, GA

Renee Lumpkin
Homewood, IL

Rene Luna
Chicago, IL

Christopher Luther
New Laguna, NM

Elaine Makas
Lewiston, ME

Paul Marchand
Washington, DC

Melissa Marshall
West Hartford, CT

Douglas Martin
Los Angeles, CA

Kathy Martinez
Oakland, CA

Julie Maury
New York, NY

John McClain
Omaha, NE

Maureen McCloskey
Washington, DC

Steven Mendelsohn
San Francisco, CA

Eileen Mesterhahm
Hammond, IN

Oral Miller
Washington, DC

Steven Mitchell
Tuba City, AZ

Judith Myers
Santa Fe, NM

Karen Myers
Peoria, IL

Katherine Neas
Washington, DC

Shelly Nixon
Newton Square, PA

Becky Ogle
Alexandria, VA

Carolyn Osolinik
Washington, DC

Barbara Otto
Chicago, IL

Chris Palames
Shutesbury, MA

Larry Paradis
Oakland, CA

Rob Park
Lynnfield, MA

Carole Patterson
Eugene, OR

Dorothy Peavey
Anchorage, AK

Darby Penney
Albany, NY

Ray Petty
Lawrence, KS

Richard Petty
Little Rock, AR

David Pfeiffer
Boston, MA

James Piet
Concord, NH

Jorge Pineda
Washington, DC

Juan Pollo
Miami, FL

Stoney Polman
Lansing, MI

Brenda Premo
Sacramento, CA

Steve Prenger
Arlington, TX

Burton Pusch
Springfield, IL

Carmen Ramirez
El Paso, TX

Daniel Ramirez
El Paso, TX

Laura Rauscher
Boston, MA

Juliana Recio
Chicago, IL

Reginald Redding
Rochester, NY

Julie Reiskin
Denver, CO

Curtis Richards
Sacramento, CA

Mary Ridgely
Madison, WI

Virginia Roberts
Austin, TX

Pedro Rodriguez
Hialeah, FL

Joy Rogers
Park Forest, IL

Helen Roth
Logan, UT

Harilyn Rousso
New York, NY

Phyllis Rubenfeld
New York, NY

Lynnae Ruttledge
Salem, OR

Corbett Ryan
Winnetka, IL

John Sanford
Lansing, MI

Bill Scott
Phoenix, AZ

Anne Seggerman
Fairfield, CT

Sieglinda Shapiro
Philadelphia, PA

Ann Siegal
West Hartford, CT

Rosalyn Simon
Washington, DC

Edward Smith
Raleigh, NC

Eleanor Smith
Atlanta, GA

Mark Smith
Jackson, MI

Drew Sommers
Minneapolis, MN

Al Sonnenstrahl
Greenbelt, MD

Thea Spires
Augusta, ME

Arthur Springer
New York, NY

Max Starkloff
St. Louis, MO

Charlotte Stewart
Fort Worth, TX

Ronald Storn
Atlantic Beach, FL

Antonio Suazo
Washington, DC

Al Swain
Lansing, MI

Susan Sygall
Eugene, OR

Clyde Terry
Concord, NH

Peter Thomas
Washington, DC

Stephanie Thomas
Austin, TX

Antoinette Tillman
Washington, DC

Linda Toms-Barker
Oakland, CA

Charlotte Townsend
Honolulu, HI

Angela Traiforos
Upper Marlboro, MD

Mark Trombino
Tempe, AZ

Marcus Tsingine
Tuba City, AZ

Ed Turner
Richmond, VA

Jim Tuscher
St. Louis, MO

Greg Vanderheiden
Madison, WI

Becca Vaughn
Topeka, KS

Michael Volkman
Albany, NY

Kent Waldrep, Jr.
Dallas, TX

Mary Wambach
Boston, MA

Douglas Watson
Little Rock, AR

Susan Webb
Phoenix, AZ

Carol Weber
Oklahoma City, OK

Jackie Wenkman
Whitewater, WI

Janet Whitt
New York, NY

David Williams
Elyria, OH

Renee Whaley
Spring Hill, FL

Wendy Wilkinson
Houston, TX

Richard Womack
Washington, DC

Glenn Young
Seattle, WA

Tony Young
Reston, VA

Phyllis Zlotnick
Newington, CT

Hale Zukas
Oakland, CA

REMARKS BY MARCA BRISTO, CHAIRPERSON
National Council on Disability
National Summit on Disability Policy
April 27, 1996, Hyatt Regency Dallas

I look out at all of you and think what an absolutely incredible group of people we have here today. I think it's fitting that we are at Reunion Plaza. For me, this truly is a reunion. Just before I came in here, I was expressing my anxiety about the process, when I remembered that my artist friends tell me that the sloppier the process, the better the final product.

One of the people here turned to me and said, "It reminds me of the old Chinese proverb, 'Out of chaos, brilliance.'" You are the brilliance. We are the chaos. In any case, you are what brought us here. In my view, the greatest accomplishment of the National Council on Disability and its groundbreaking 1986 report, Toward Independence, has been the increased empowerment of people with disabilities--the heightened belief that we ourselves can make a difference. It is that commitment, that belief, and that principle that have gathered us here today.

Putting this summit together has been quite a journey. We started with Toward Independence as our foundation, an active advisory body, and a lot of dedication on the part of the people who have been working behind the scenes. We've looked at where we've been. We've looked at the progress of the last decade. We've looked at our achievements, and we've looked at the gaps and the problems that remain. We've begun to take a look at where we're going. That's why you are here. It requires an enormous leap of faith to take us from where we are today to where we hope we'll be Monday evening when we all go home.

The Council is committed to the principles of the Clinton administration--and we hope of all Americans--empowerment, independence, and inclusion. We challenge you to take those principles, apply them to the areas you'll be working in, and try to bring us closer to the values they represent. As we engage in this process, we need to remember the lessons of history and to consider the context in which we find ourselves today.

The world is changing rapidly. Budget pressures, economic pressures, globalization, the shrinking of the world's community, the change in politics in Washington, a shift in power from the Federal Government to the states, and the vast telecommunications revolution are but a few of the forces surrounding us.

We have changed also. How we in the disability community experience life today is quite different from the way we and our peers did only 15 short years ago. And most important, the attitudes toward our achievements have changed as well.

On the one hand, we see new hope and a new understanding of what our potentials and possibilities are. However, on the other hand, as with other political and social movements, just when we seem to be at the brink of achieving our goals, there is a backlash that comes along to stop us.

Our leaders, such as Ed Roberts, have challenged us to modify outdated attitudes and systems of public policy in order to force a paradigm shift. And as we do so, we cannot rest on our laurels. The post-euphoria period of the ADA has been a deep problem for us. We have not adequately prepared for the resistance we should have expected or the myths about the ADA that have persisted.

Leaders from other movements have taught us the lessons of backlash. Susan Faludi, a feminist author, refers to its subtle disguises. If we do not recognize them, they will divide and conquer us, breaking us up, pitting us against each other, isolating one disability group only to attack the next. We see that happening today: rewarding people who play the game and follow the rules of the good-old-boy network and punishing those who stand up for the new order.

Old myths are remarketed as if they were new truths, and we return again and again to face the very attitudes we have been working so hard to dispel. Backlash is at its worst when it goes within, challenging the sense of self that we, as individuals and as a group, have worked so hard to achieve. When we turn the backlash against ourselves and begin to accept those discriminatory patterns, when we begin to believe that maybe we're asking just a little too much, we have to take a good, hard look at ourselves and each other.

Your presence here today strengthens our vision of a new world order that brings people with disabilities into the whole circle of life. It is also a testimony to your belief that we ourselves can be a significant force for change. Gloria Steinem calls this the "revolution from within."

That is your challenge today: to begin to paint a picture of where you want to be and to insist that, no matter what the odds, you will not give up. Ten years ago, who would have thought that the Berlin Wall would fall, that Nelson Mandela would be released from prison, or that the Soviet Union would break apart? Only those involved in these visions and struggles would have believed that such outcomes could be possible. We stand at a critical juncture where there are two paths: one embraces life, the other leads toward death. And folks, let me emphasize, these choices exist right now.

Consider the issue of health reform, the drive toward rationing and its potential impact on people with disabilities. We can only counteract this trend if we act together. Remember what happened in Oregon when the community used the ADA to reject the Oregon Medicaid waiver. Reflect on what happened in New York City where again the ADA was used to achieve similar ends. Recall the case of the young person who was denied a heart-lung transplant simply because he had a disability. In each case, the ADA and other tools we have fought so hard to win were used and the needs of the disabled community were not compromised.

My good friend Hugh Gallagher recently wrote a book that compares the priorities of the American health care system to the extermination of people with disabilities in pre-Nazi Germany. I share with you one section of that book to remind us of the stakes before us.

In Germany, treatment decisions regarding disabled patients were not made by attending physicians. Their roles were simply to provide information detailing the extent of disability, length of treatment, and the prognosis for recovery and return to useful employment. Completed questionnaires went to a committee of respected physicians who determined whether the patient was worthy of further medical treatment. These decisions were based on economic, social, and medical criteria.

Only when a majority of the committee favored "final medical treatment" was a patient's questionnaire forwarded for higher review. When the appeal board confirmed the original decision, the patient was sent to a euthanasia center.

At each stage of the process, responsibility was denied. "I simply filled out a form." "I only gave an opinion." "I only helped draft the guidelines." "I just carried out the order." "The decision was made by someone far senior than me."

Who is making such decisions for us today? The stakes are enormous. Therefore, I ask you today to accept the challenges we have put before you: to latch onto your vision, to test the limits, to believe in yourself. The Council believes in you. We have learned from our heroes in the civil rights movement that our goal must be not only to end segregation but to create and foster integration within a truly supportive community.

Martin Luther King reminded us of this when he said:

Desegregation will break down the legal barriers and bring men together physically. But something must touch the hearts and souls of men so that they will come together spiritually, because it is natural and right. A vigorous enforcement of civil rights laws will bring an end to segregated public facilities which are barriers to a truly desegregated society, but it cannot bring an end to fears, prejudice, pride, and irrationality. Those dark and demonic responses will be removed only as men are possessed of the invisible inner law which etches on their hearts the conviction that all men are brothers and that love is mankind's most potent weapon for personal and social transformation.

A few years ago, I had the opportunity to introduce Gloria Steinhem at a meeting. She expressed these thoughts in a different way. She said, "We can go nowhere until you can go everywhere." My dear friend Justin Dart, who has been my inspiration through this process, has joined many others in reminding us that disability is a normal part of the human condition that is to be embraced and celebrated.

Let us dedicate our work today to the belief in ourselves and to our heroes Ed Roberts, Wade Blanck, Irv Zola, Tim Cook, Elizabeth Boggs, and many others who have given their lives to promoting changes in outdated attitudes and to charting a path that will alter world history. Let us also embrace the 25 young people who are here today to share and learn with us. They represent our future. You have a tremendous opportunity and responsibility to help pass on this vision. Thank you very much for being here.

REMARKS BY JUSTIN DART
National Council on Disability
National Summit on Disability Policy
April 27, 1996, Hyatt Regency Dallas

Our movement, our culture, stand at an historic crossroads.

Angry about a runaway national debt and other growing pains of democracy, well-meaning Americans are tempted by a politics of blame and retreat. The ADA and the IDEA are under attack. The public services that empower people with and without disabilities are under attack. Our very right to live is under attack.

On the positive side, science and democracy offer a golden age of human culture in the 21st century, if we, as a people, have the courage to act.

Frustrated by a dream so close, and yet so far, Americans cry out for a vision based on shared values, common sense and a record of practical solutions. You have created that record, that vision.

I propose a revolution of empowerment. A revolution that will empower every 21st century American to live his or her God-given potential for self-determination, productivity and quality of life. I propose a new vision of free enterprise--free enterprise that systematically includes all, in its process, in its fruits.

I congratulate Marca Bristo, Audrey McCrimon and all the members and staff of the National Council. At a time when others are retreating or defending, Marca is calling us forward, to create disability policy that fulfills the American dream.

How do we approach our task? An initial thought.

Common wisdom: Accept political reality. Don't suggest visionary changes. You might be accused of radicalism. You might not get anything. Don't rock the boat.

No. If you have no vision of your destination, how in the world are you going to get there? Fear of rocking the boat has killed great companies and great cultures. Thomas Jefferson, Thomas Edison, Ed Roberts, all the pioneers of 504, independent living, IDEA and the ADA were all radicals who rocked the boat to victory. Practical politics, of course. Practical first steps, of course. Transcending vision, absolutely.

Before we create the policy, we've got to define the problem. And the potential. What is America's problem?

The politicians of retreat say socially responsible national government hasn't worked. They say go back to the good old days. They say pass social responsibility from the Federal Government to the states and cities, to the businesses, the charities and the families. They say the marketplace will provide rights, services and prosperity. They say ADA, IDEA, mainstreaming people with disabilities is too expensive, they say people with disabilities are a small minority of tragic victims that can be taken care of through minimal welfare and charity.

We say no!

Our vision: Socially responsible government is the heart, the soul, the success of America. We founded a new nation on a revolutionary new principle--all people are created equal--each human life is sacred.

All people are endowed by their creator with certain unalienable rights...life, liberty and the pursuit of happiness, that to secure these rights governments are instituted among men.

With government protecting, empowering wave after wave of oppressed people, America produced the greatest prosperity, the greatest quality of life in human history.

When people with disabilities are empowered America will be enriched again.

There's nothing wrong with responsible government. America's problems with debt, poverty, hostility, crime, the family, are the natural growing pains of our astounding success.

But however deserving they may be, are not people with disabilities, after all, a tragic minority that is only marginally relevant to the mainstream of culture? This monstrous fallacy is the foundation of most barriers.

We are not a tragic minority. We are a magnificent, triumphant majority.

Vision: Science and democracy have created a new human. The majority of Americans will triumph over death to live with a disability at some point in their lives. Every single American family will experience disability. Disability is a normal characteristic of the new human. Policy that does not meet the needs of people with disabilities does not meet the needs of anyone.

Vision: Science gives all the new humans, with and without disabilities, a new potential to be a hundred times more productive, to live immeasurably better than our strongest, smartest, richest ancestors of only 200 years ago. But we are not allowing old attitudes, old systems to limit the magnificent potential.

Vision: America's task now is not to go back, not to defend the adolescent status quo. Our task is to go vigorously forward, to focus the full force of science and free enterprise on creating a new culture that will enable the new humans to live their new potential.

We must learn the lesson of democracy in every nation: Success has resulted not from an unbridled free market, not from well-meaning socialism, but from government promoting and protecting the empowerment of the individual to exploit the power of free enterprise, and science, to produce and to live the good life.

We must eliminate the residue of pre-science, pre-democratic paternalistic culture that blocks progress, and complete the culture of empowerment.

Empowerment is when we say no to the primitive illusion that society, government, the free market, the public media, are some sort of paternalistic supergods that can give us truth, equality, and prosperity.

Empowerment is when we understand that society is nothing more than what we as individuals think and do every day. We are society. Only when we govern ourselves is there government. Only when we produce is there production. The legitimate purpose of society and its governments, therefore, is not to govern people and to provide the good life for them, but to empower them to govern themselves and to provide the good life for themselves.

Empowerment is when we understand that inalienable rights are inseparable from inalienable responsibilities. Each one of us is inescapably responsible to participate in democratic government, to invest all of our abilities and resources in producing lives of quality for ourselves and for all. Family values, absolutely! In interdependent modern society you cannot be responsible for the members of your own family without being responsible for the society in which they live and the air that they breathe.

This is not a philosophy, it is a fact. It is not a new fact. It was clearly stated by Abraham, Jesus, Buddha and Mohammed.

Empowerment is when we understand that policy for an age of science and democracy cannot provide packaged solutions; it must provide a framework of principles and goals through which the trial and error of the scientific method can flow; it must enable all individuals to make the decisions, indeed to make the so-called mistakes, which are essential to the success of science and democracy.

Empowerment means choices.

These are some of the foundational concepts of a culture that empowers.

But what specific form will empowerment policies take? That is up to you, and to the trial and error of science.

Let me give you some random focuses. You will create more and better ones.

Vision: Our task is not to weaken government, it is to strengthen government. Our task is to cut the massive fat and the oppressive paternalism out of government, to eliminate the deadly domination of government by special interests. Our task is to greatly strengthen the ability of government to systematically empower all people to govern themselves and to produce the good life for themselves and for society. Our task is to infuse government with the best methods of independent living and free enterprise.

Vision: ADA and IDEA are cornerstones of the empowerment culture. They empower all Americans to participate, to produce. ADA and IDEA and other disability rights laws must not be weakened. They must be vigorously implemented.

Vision: No more billion-dollar Band-Aids on ghettoes and obsolete, high-overhead infrastructure. Government joins with free enterprise to create new communities where clogged highways, ghettoes, pollution and high taxes are replaced by compact, accessible, affordable environments. Accessible, affordable housing, commerce and recreation. Comprehensive systems of public transportation that take you where you need to go. Free enterprise gave us the shopping center. Now give us the shopping-living-working center.

Vision: All new technology for public use, required by law to be accessible and affordable to all. Accessible telecommunications makes every home, office, farm, hospital room and prison cell, into a university, a place of work, a shopping and commercial center.

Vision: Traditional public and private services, completely recreated, completely integrated, completely individualized, to foster empowerment. A computerized, one-stop, one-file continuum of services--from personal assistance, health care and employment, to economic aid and individualized counseling--available 24 hours a day to every person from birth to death. Guaranteed and coordinated by government, but with individuals making final choices from among the full spectrum of options provided by all levels of government and free enterprise. No forms. No waiting for offices to open. No bureaucrats telling you to call another number.

Vision: Lifetime education, a universal supermarket of educational choices, including higher education, guaranteed to every citizen. An educational Internet which opens the resources of Harvard, the Library of Congress, and the private sector to every person. A portable computer for every primary school child. Public service and private industry internships for all.

Vision: Comprehensive, quality, lifetime health care guaranteed to all. With complete choices for consumers. Including long-term, consumer-controlled personal assistance devices. Patient's rights, including the right to live, protected by law.

Vision: International policy characterized by a strong but reduced, streamlined military, and America as the world's most articulate voice for the rights and the empowerment of the individual. The disability community should be funded to play a leading role.

Vision: Balance the budget. Absolutely! And pay the national debt. In a bankrupt America, people with disabilities will be the first to suffer and die. The 225 billion dollar annual interest on the national debt will pay for the empowerment culture.

If every American carries his or her fair share of the load, we can balance the budget without depriving one single American of his or her federally guaranteed right to Medicaid, Medicare or any of the basic services that are essential to a life of productivity, dignity, and quality.

Vision: No tax cuts for anyone until we balance the budget, pay the debt and every person is receiving quality health care and empowerment services. Cutting investments in productivity to provide short-term benefits for the wealthy violates the most fundamental principles of good business.

Vision: Government, the private sector and the disability community initiate a major campaign to educate America about the rights and the potential of people with disabilities, about the concepts and methods of empowerment. This will require presidential leadership and bipartisan leadership at every level of government. It will require substantial funding, including funding which empowers the disability community, business, education and the media to participate meaningfully.

This is an ambitious agenda with a magnificent potential. It is within our power to create a golden age of science for life, a quality of life for all Americans that exceeds the imagination of utopian fiction.

But can we afford to create the empowerment culture--to expand public services, to build new communities. We can't afford not to do it. The status quo is bankrupting us. Investment in empowerment will dramatically lower the overhead and increase the productivity and the quality of American life. It will create millions of new jobs. There will be an explosion of small business when guaranteed, portable, empowerment services liberate people to work where they choose. There will be an economic boom that will dwarf the industrial revolution. America will renew its economic and moral leadership of the world.

Nothing could be more Republican, nothing could be more Democratic, nothing could be more in harmony with family values, with reforming welfare, reducing the deficit and with the American heritage than empowering all Americans to participate in free enterprise democracy.

Empowerment in America is possible. We have the money. We have the technology. But do we as a nation have the will and the courage to change?

How can we possibly overcome the powerful lobbies for retreat--and for the status quo?

Even our oldest, strongest friends in government seem to be overcome by a tidal wave of hostile, escapist politics. Credible people are leaving public service.

Who will save the dream? Who will make the dream live?

Look around the room. The buck stops here.

We are responsible. We of the disability community are responsible to every American family, present and future, because every family will experience disability. We are responsible to every family in the world, because the world is watching the ADA and the IDEA. The world is watching American democracy.

The world will follow what we do. Failure is unthinkable.

No soldier ever died in a better cause.

You who have done so much--we together--have got to do more. We've got to win. Where do we start?

We start by getting off the defense and onto the offense.

Create the vision. Shout the vision. Build the new culture. Many of you are already doing it. But for every one of us, we've got to empower a thousand new leaders.

The elections of 1996 give us a once in a century opportunity to communicate our vision.

I believe this is the most important time of decision for America since the Civil War.

Will the United States of America maintain the authority to guarantee its citizens the basic rights and services of civilized society, or will that authority be passed to a confederacy of local governments, special interests and charities?

Get into politics as if your life depended upon it. It does.

We of the disability community must be represented, our message must be shouted in all campaigns. Yoshiko and I have made a decision of conscience--you will make yours. But whatever campaign we as individuals support--Clinton, Dole, Republican, Democrat, independent--we must not attack each other. We must remain united in the foundational values of the disability community--ADA, IDEA, empowerment.

United we win. Divided we lose.

Beloved colleagues, I've made a long speech. My words are inadequate. Listen to the heart of this old soldier.

As I face the defining battles in 1996--maybe the last great battles of my life--I agonize over my responsibility to you and to the life in the future. I raise my passionate prayer for the will and the wisdom to transcend my weaknesses and give all that I am.

And thank God for you. You have proved that the American dream can live. You have made miracles in thousands of lives like mine. I owe you so much. I love you so much.

My beloved mentors and peers in justice: Marca, Liz, Gina, Bob, Bruce, Michael, Howard, John, Rae, Nancy, Debbie, Marilyn, Max, Colleen, Gerben. My beloved colleagues in Justice for All, Becky, Fred, Mark.

I thank God for each and every one of you here today. I love you.

I reach out to each and every one of you. I ask your guidance and your inspiration. I ask for the privilege of fighting at your side once again.

Let us embrace and lift each other. Let us go forward in the great tradition of Washington, Lincoln, Martin Luther King, Wade Blank, Ed Roberts and Elizabeth Boggs. Let us greet intimidation with courage, hate with love, demagoguery with simple truth.

Let us overwhelm fear and fallacy with our vision of an America that includes all, that empowers all.

Let us embrace America, from sea to shining sea. Let us bring America together, men and women, young and old, people with and without disabilities, Republicans, Democrats, and Independents, business, labor, rich, poor, and middle class. Let us bring America together, Blacks, Whites, Browns, gays and lesbians, Christians, Muslims, and Jews, pro-lifers and pro-choicers. Every American has a valuable and unique contribution to make.

Let us shout together, each in our own way. President Clinton, Speaker Gingrich, Senator Dole, America, join us in creating empowerment USA. Free our people. Free enterprise for all.

America, join us in keeping the sacred pledge: One nation under God, indivisible, with liberty and justice for all.

Colleagues, I do love you. Together, we shall overcome.

DESCRIPTION OF THE NATIONAL COUNCIL ON DISABILITY

Overview and Purpose

NCD is an independent federal agency led by 15 members appointed by the President of the United States and confirmed by the U.S. Senate.

The overall purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

Specific Duties

The current statutory mandate of NCD includes the following:

• Reviewing and evaluating, on a continuing basis, policies, programs, practices, and procedures concerning individuals with disabilities conducted or assisted by federal departments and agencies, including programs established or assisted under the Rehabilitation Act of 1973, as amended, or under the Developmental Disabilities Assistance and Bill of Rights Act; as well as all statutes and regulations pertaining to federal programs that assist such individuals with disabilities, in order to assess the effectiveness of such policies, programs, practices, procedures, statutes, and regulations in meeting the needs of individuals with disabilities.
  
  
• Reviewing and evaluating, on a continuing basis, new and emerging disability policy issues affecting individuals with disabilities at the federal, state, and local levels, and in the private sector, including the need for and coordination of adult services, access to personal assistance services, school reform efforts and the impact of such efforts on individuals with disabilities, access to health care, and policies that operate as disincentives for individuals to seek and retain employment.
  
  
• Making recommendations to the President, the Congress, the Secretary of Education, the Director of the National Institute on Disability and Rehabilitation Research, and other officials of federal agencies respecting ways to better promote equal opportunity, economic self-sufficiency, independent living, and inclusion and integration into all aspects of society for Americans with disabilities.
  
  
• Providing the Congress, on a continuing basis, advice, recommendations, legislative proposals, and any additional information that NCD or the Congress deems appropriate.
  
  
• Gathering information about the implementation, effectiveness, and impact of the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.).
  
  
• Advising the President, the Congress, the Commissioner of the Rehabilitation Services Administration, the Assistant Secretary for Special Education and Rehabilitative Services within the Department of Education, and the Director of the National Institute on Disability and Rehabilitation Research on the development of the programs to be carried out under the Rehabilitation Act of 1973, as amended.
  
  
• Providing advice to the Commissioner with respect to the policies and conduct of the Rehabilitation Services Administration.
  
  
• Making recommendations to the Director of the National Institute on Disability and Rehabilitation Research on ways to improve research, service, administration, and the collection, dissemination, and implementation of research findings affecting persons with disabilities.
  
  
• Providing advice regarding priorities for the activities of the Interagency Disability Coordinating Council and reviewing the recommendations of this Council for legislative and administrative changes to ensure that such recommendations are consistent with the purposes of NCD to promote the full integration, independence, and productivity of individuals with disabilities.
  
  
• Preparing and submitting to the President and the Congress an annual report titled National Disability Policy: A Progress Report.
  
  
• Preparing and submitting to the Congress and the President an annual report containing a summary of the activities and accomplishments of NCD.

Consumers Served and Current Activities

While many government agencies deal with issues and programs affecting people with disabilities, NCD is the only federal agency charged with addressing, analyzing, and making recommendations on issues of public policy that affect people with disabilities regardless of age, disability type, perceived employment potential, economic need, specific functional ability, status as a veteran, or other individual circumstance. NCD recognizes its unique opportunity to facilitate independent living, community integration, and employment opportunities for people with disabilities by ensuring an informed and coordinated approach to addressing the concerns of persons with disabilities and eliminating barriers to their active participation in community and family life.

NCD plays a major role in developing disability policy in America. In fact, it was NCD that originally proposed what eventually became ADA. NCD's present list of key issues includes improving personal assistance services, promoting health care reform, including students with disabilities in high-quality programs in typical neighborhood schools, promoting equal employment and community housing opportunities, monitoring the implementation of the Americans with Disabilities Act, improving assistive technology, and ensuring that persons with disabilities who are members of minority groups fully participate in society.

Statutory History

NCD was initially established in 1978 as an advisory board within the Department of Education (Public Law 95-602). The Rehabilitation Act Amendments of 1984 (Public Law 98-221) transformed NCD into an independent agency.