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Operation People First:
Toward a National Disability Policy




A REPORT OF
THE PRESIDENT'S COMMITTEE ON EMPLOYMENT OF
PEOPLE WITH DISABILITIES
1993 TELECONFERENCE PROJECT



Published March 1994

All public documents produced by the President's Committee on Employment of People with Disabilities are available in alternative formats.

Table of Contents:





"This election is about putting power back in your hands and putting government back on your side. It's about putting people first."
-- Bill Clinton, Democratic National Convention, 1992.

"We believe that all persons with disabilities must be fully integrated into mainstream society, so they can live fulfilling and rewarding lives. During our years in public office, we have compiled strong records of support for public and private initiatives to enhance the independence and productivity of persons with disabilities. We will bring that commitment to Americans with disabilities to the White House. And we will actively involve people with disabilities in developing a national policy that promotes equality and opportunity for all Americans. People with disabilities are among our nation's greatest untapped resources. We will make sure they have every opportunity to help all of us rebuild America."
-- Clinton/Gore Campaign Position Paper on People with Disabilities 1992.

I. THE EMPOWERMENT PROCESS

According to the U.S. Census Bureau, of the nation's population of 48.9 million citizens with disabilities, an estimated 30.2 percent (14.8 million) are of working age and have a severe disability, one with a severe limitation in a functional activity or in a socially defined role or task. Of these 14.8 million people with severe disabilities over 76 percent (11.3 million) are unemployed. We believe this tremendous loss of human potential in the workplace is caused by the barriers and findings identified in this report.

Over the years members of the disability community have joined other citizens to protest their exclusion from the decision-making processes of a paternalistic and increasingly bureaucratic government. President Clinton has pledged to bring the American people, including people with disabilities, into the decision-making and action processes of government. This is not simply a good thing to do; it is the only way that human society can make the transition from millennia of authoritarian paternalism and labor intensive industry to an era of science and free enterprise democracy consistently utilized for the enhancement of each individual life. The magnificent life-quality potential of an age of information and technology, of increasingly complex interdependency, can only be achieved in a society that empowers each of its members to be a decision maker and a producer -- a society that puts individual people first.

President Clinton has significantly expanded pioneer policies of inclusion established in the Carter, Reagan and Bush administrations. He has appointed disability rights leaders to significant positions. He and his cabinet members have met personally with disability community leaders to discuss policy. Representatives of major disability constituencies have been involved in the development of national policy such as health care reform and the implementation of the Americans with Disabilities Act. Some Governors and Mayors have provided similar leadership for inclusion. However, the vast majority of Americans with disabilities remain outside of the decision-making process.

This message has come to the President's Committee on Employment of People with Disabilities from representatives of Governors, Mayors, state and local agencies, service providers, parents, and especially from disability-rights organizations and individuals with disabilities. People labeled mentally retarded, people with psychiatric disabilities, people with multiple disabilities and very severe disabilities of all types have had problems even finding forums in which to voice their views.

After many years of well-intended but not entirely effective efforts to bridge the gap between the grass roots and government through existing mechanisms, the President's Committee undertook Operation People First: the development of an ongoing communications network that would enhance the power of state and national representatives of major disability community constituencies to engage in meaningful dialogue and cooperative action with the Presidency and the federal administration, with the Congress and with each other.

The final goal of these efforts, of course, is to systematically empower each person to take conscious, effective responsibility for society. Until that happens, the human dream -- the potential of science and democracy fulfilled -- cannot be achieved.

Following is a report of phase one of Operation People First.

In June 1992, after completing face-to-face meetings with disability community leaders in each of the 50 states, Chairman Justin Dart, Executive Director Rick Douglas and Executive Assistant John Lancaster launched Operation People First. Lancaster was designated to head the project team, assisted by Dart, Douglas, States Relations Executive, Maggie Roffee and Administrative Assistant to the Chair, Lori Pressley. In addition, a team of four special project associates with experience in outreach, communications, and political campaign operations were recruited in February 1993 to assist with the project.

Purpose and Goals

Chairman Justin Dart eloquently outlined the purpose of Operation People First in his introductory remarks to each of the teleconference calls with disability community leaders in the 50 states and territories.

"Traditional liberalism and conservatism have reached the limits of their potential. Too many Americans are left out by systems that put political dogma ahead of people. Too many Americans are robbed of responsibility by the illusion of government and free market as magical sources of solutions.... The task of the nineties is to put people first, to put people before process and style.... The task of the nineties is empowerment.... We of the disability community cannot afford to stand apart ... to focus on disability issues only ... to wait for government to act.... We of the disability community must join with our fellow Americans to launch a revolution of empowerment.... We can, as we did with ADA, insist on firm commitments to a blueprint for definitive, comprehensive change...."

The initial goals of Operation People First were:

  • to identify 20-40 authentic representatives of the major disability community agencies and constituencies in every state -- a group small enough to engage in meaningful personal dialogue with each other and with federal leaders, but large enough to represent most of the major disability constituencies;

  • to hold at least one teleconference in every state to discuss the network process and issues of concern to the disability community at this time; and

  • to create a structure for national and intrastate leadership forums for the development of national disability policy recommendations.

The long-range goal of Operation People First is to create a communications network through which all who impact employment of people with disabilities can be represented in an economical, timely and democratic process of information sharing and decision making.

This will require participation by the disability community, the White House, relevant federal agencies, the Congress, state and local government, business, labor, service providers, educators, media representatives and others.

Because the President's Committee lacks the resources to accomplish the entire project at one time, and because empowerment must by its very nature start with those who would be empowered, the first phase of Operation People First included only representatives of the disability community. It represents a modest but significant movement away from paternalistic authority, and toward government that empowers. In addition, it has served as a forum for immediate, meaningful dialogue about historic policy decisions of the day such as the budget and health care reform.

Methodology of Project

1. The project team conducted a series of 60 telephone conference calls, each lasting between 90 and 120 minutes. During the period March-September, 1993, telephone meetings were held in every state, the District of Columbia, Puerto Rico, the Virgin Islands, Guam and the Pacific territories; two teleconferences were conducted in some of the larger states: New York, California, Texas, Florida, and Pennsylvania. Many persons not able to participate in the teleconferences were talked to separately. More than 1,200 disability constituency leaders participated in the process.

The teleconference agenda was designed to ensure people first participation. After brief introductions by Justin Dart and staff, each participant spoke for 2-3 minutes on issues of their choice. This was followed by free discussion of the issues. Finally, participants were asked to discuss ADA implementation in their states, cooperative action on the part of the disability community, and how the Presidency could better serve them.

Participants were not required to speak officially for their groups. This enabled them to communicate more frankly and to engage more freely in creative interaction.

2. On November 22, 1993 an expanded staff team held a national two hour teleconference on President Clinton's health care plan. Several thousand leaders of the disability community participated at 131 sites covering all 50 states. Questions were directed to a distinguished panel of experts gathered at studios of Atlantic Video in Washington, DC. Executive Director Rick Douglas acted as the moderator, and Chairman Justin Dart the keynoter. The panel featured former Ohio Governor Richard Celeste, Director of the President's Health Care Campaign, Sue Daniels of the Department of Health and Human Services, Gina McDonald of the National Council of Independent Living and Janet O'Keeffe, Marty Ford and Tony Young of the Consortium of Citizens with Disabilities. There was very substantial dialogue on the major health care concerns of the disability community. America's Disability Channel video-taped the meeting at the central Washington site; it was aired later.

The Network Participants

Participants for the Operation People First network were identified and contacted by the project team with the assistance of national constituency groups, representatives of state Governor's Committees and disability-community leaders. In all cases, a careful effort was made to identify and include persons who were democratically selected representatives of the major disability community constituencies, or who were recommended by their colleagues in their communities to be representatives at large. When designated representatives were unable to participate due to scheduling conflicts, they were encouraged to chose a proxy to participate in their place. While the project team attempted to ensure representation of the major constituencies in each state, this was not possible in every instance due to technical and logistical problems.

However, more than 1,200 leaders of every major disability constituency in every state participated in Operation People First. Most participants were the democratically selected representatives of thousands of other people. Each person spoke. Unlike opinion polls that limit responses to one version of one issue, all participants expressed their opinions about issues of their choosing. All participants had the opportunity to advise and question their government on a wide range of policies. All had the benefit of immediate feedback from their state level colleagues, as well as national officials. Many leaders who were not able to participate in the scheduled call were interviewed separately by staff members of the project. An unprecedented sampling of informed opinion occurred. An unprecedented experiment in empowerment was begun.

Wherever possible, at least one representative from each of the following numbered groupings of major disability constituencies, agencies and organizations was included in every teleconference.

  • Governor's Committees on Disability (or equivalent entity)
  • AIDS community - AIDS Coalition, ACT-UP, other
  • American Council of the Blind affiliate, or equivalent representative of the community of persons with visual impairments
  • ADA state coordinating entity, Disability Rights Education and Defense Fund (DREDF) trainer, regional Disability and Business Technology Access Centers (DBTAC) and other entities related to ADA implementation.
  • AFL-CIO
  • American Disabled for Attendant Programs Today (ADAPT)
  • Consortium for Citizens with Disabilities (CCD) -- State liaison
  • Developmental Disabilities Planning Council
  • The Arc (formerly Association for Retarded Citizens), TASH, Parent Network, United Cerebral Palsy affiliates
  • Brain Injury Survivors, National Head Injury Foundation
  • Epilepsy, learning disabilities and other "hidden" disabilities
  • Independent Living
  • National Alliance for the Mentally Ill, Mental Health Association affiliates
  • National Association of the Deaf affiliate, or equivalent representative of persons who are deaf
  • National Association of Psychiatric Survivors, National Mental Health Consumers Association, National Mental Health Consumer Self-Help Clearing House (people with psychiatric disabilities advocating for themselves).
  • Paralyzed Veterans of America, Disabled American Veterans affiliates, other veterans groups.
  • People First, Self-Advocates, Speaking for Ourselves (people labeled mentally retarded advocating for themselves)
  • Protection and Advocacy entities
  • State Coalitions for People with Disabilities
  • State Vocational Rehabilitation Agency and other rehabilitation agencies for persons with blindness and deafness, where those exist
  • Representatives at large -- individuals whose historic contributions have qualified them for participation in meaningful policy dialogue

Representatives from many other groups were included in states where such groups were recommended as being particularly active in disability community affairs.

State representatives of the National Federation of the Blind participated in the early phase of the project. However, the leadership of the organization requested that President's Committee solicit input exclusively from their national office. This request was honored.

There is no illusion that this list includes all constituencies of the vast, diverse disability community, or that impact disability policy. It does reflect a sincere effort to include as many of the real players in the disability movement as could reasonably speak on one state teleconference, and that could reasonably be in ongoing personal contact with President's Committee staff at this time.

Staff will continue to update and expand the list of people and organizations active in the ongoing disability community network.

II. PRIMARY RECOMMENDATION

As a result of initiating Operation People First and conferring with the network of disability-community leaders identified, we have reached an overriding conclusion and recommendation beyond the more specific findings and recommendations enumerated below. The nation lacks a coordinated and comprehensive policy that is consistent with and supportive of the purposes of the Americans with Disabilities Act (ADA) so eloquently stated by Congress in Section 2. Findings and Purposes of the Act. The United States lacks coordinated, comprehensive programs and laws that empower people with disabilities in the political, economic and social mainstream of our culture.

Thus, we recommend the development of a coordinated, comprehensive national disability policy that is driven by and consistent with the ADA. This policy should be developed over the next several years, complete with legislative language, regulatory and programmatic change, and budget recommendations. Every government program, specific to individuals with disabilities and generic, should be considered -- from employment and training to income supports, rehabilitation, education, housing, transportation, health care, personal supports, recreation, etc. It should then be presented to the President and the Congress. This policy planning process should be undertaken with the complete cooperation of all federal government agencies, including financial and personnel resources as necessary, to complete the task in a timely manner.

The President's Committee on Employment of People with Disabilities advises the President and the federal government on policy and programs to develop maximum employment opportunities for people with disabilities, and provides the nation with public education and cooperation among organizations and agencies to achieve this end. Consistent with this role the President's Committee is prepared to work with the National Council on Disability and other government agencies in carrying out the primary recommendation of this report.

III. EXECUTIVE SUMMARY

The following 11 points represent the major findings of Operation People First. These points were repeatedly stressed by participants as the crucial building blocks for progress by people with disabilities. These issues are the principal remaining barriers to employment for people with disabilities.

For racial, ethnic, and Native American minorities with disabilities, these issues are even more problematic. Special initiatives need to be developed to ensure that minority groups, including African-Americans, Asian- Americans, Hispanics, and Native Americans, receive equal access to information, treatment and services for people with disabilities.

Among them, three stood out as top priority. Nearly unanimous support was expressed for (1) health care reform, (2) ADA enforcement, and (3) empowerment.

1. Health Care. Reform of the nation's health care system was cited as a major concern by almost all 1,200 teleconference participants. Fair, effective reform of the health care system is clearly the number-one priority of the disability community. For real empowerment to occur, a health care system must be established guaranteeing universal coverage, a comprehensive package of services to include long-term care, and affordable delivery of services in a manner that meets the needs of consumers.

2. ADA Enforcement and Implementation. The legal framework to assure full equality and equal opportunity for people with disabilities has been created with ADA's passage. A vigorous implementation and enforcement program must be pursued to ensure that the goals of ADA are met. Such a program should include broad educational measures for employers, government officials, media, and people with disabilities. It should also include effective enforcement tools and real sanctions for non-compliance.

3. Advocacy and Empowerment. The ADA is a means to an end, not an end in itself. To take advantage of the opportunities for change presented by the law, people with disabilities must become educated about their rights, must assume the responsibility of self-advocacy, and must seek ways to cooperate in order to make their presence felt at all levels of decision making.

4. Personal Assistance Services. The establishment of affordable, accessible and consumer-controlled personal assistance services for people with disabilities ranked among the groups' highest priorities. Access to such services represent to many the basic precondition of independence, equality and dignity.

5. Parity of Coverage for Mental Health. The stigma attached to mental, cognitive and psychiatric disabilities needs to be overcome. A critical first step towards that goal would be to ensure that parity of health care coverage for people with mental-health disabilities is included as a component of any health care reform package.

6. Removal of Work Disincentives. Rules and regulations built into Social Security disability programs, Medicaid, Medicare, and other welfare programs often make work and independence difficult and often impossible for people with disabilities. The entire spectrum of programs for people with disabilities must be reviewed and such disincentives abolished.

7. Inclusive Education. The process of full and meaningful inclusion in the schools for all young people with disabilities is the starting point for real social change and integration in all walks of life. This effort must become a national priority. However, the transition to equal, integrated education must be accompanied by a thoughtful consideration of the special needs and requirements of all people with disabilities, and should not serve as an excuse to withhold necessary services for children who require them.

9. Effective Transition Programs. In order not to lose a vast number of potentially productive, contributing members of society to the trap of post-graduate dependence and isolation, effective transition programs, work-study programs, and vocational training must be made available in schools and after graduation to all young persons with disabilities who need them.

10. Housing. There is a tremendous need nationwide for affordable, accessible, integrated and safe housing for people with all sorts of disabilities. People with mental and physical disabilities account for a high percentage of the homeless.

11. Transportation. Employment, education, health care and many other opportunities are often not available without transportation. In urban areas, there is a tremendous need for additional transportation services for people with disabilities who are unable to use mainline systems. The need for effective paratransit services for people with disabilities is critical throughout rural America.

12. Attitudinal Change. A broad, society-wide effort to change attitudes about disability and about people with disabilities needs to be carried out. Responsibility for this effort extends from members of the electronic and print media, educators, health care professionals, textbook writers and program administrators to employers, and, not least significantly, people with disabilities themselves.

IV. PROJECT FINDINGS

Health Care

Health care reform clearly emerged from the teleconference discussions as the number one concern of people in the disability community. The implementation of a national health care plan with universal coverage for all Americans would do more to help people with disabilities enter the job market than perhaps any other measure. Many people with disabilities on Social Security Administration programs would be freed from worry that taking a job might endanger their Medicaid or Medicare benefits. At the same time, employers would be relieved of the burden of assuming higher health insurance payments for new employees with disabilities. As it currently exists, the employment-based health care system exerts subtle disincentives to businesses, particularly small businesses, to hire people with disabilities.

Many participants listed health care reform as their single greatest concern, and nearly all participants agreed that health care reform was a prerequisite for advancement on issues like employment, quality of life, and independent living. Without access to adequate, affordable care, people with disabilities will continue to face tremendous obstacles integrating into the mainstream of American life.

In general, Operation People First participants were highly supportive of the health care reform plan endorsed by the Consortium For Citizens With Disabilities (CCD). The CCD plan states that any ultimate solution to the health care crisis must be based on the principle of non-discrimination, ensuring that people with disabilities of all ages and their families have the opportunity to fully participate.

The CCD would define a successful health care system as one that offers a comprehensive array of health, personal and support services, a system that ensures that these services are appropriate in that they are provided on the basis of each individual's need, personal choice, and circumstances. Additionally, it holds that any truly effective solution must be equitable, ensuring that no group of people bears a disproportionate burden. Finally, the CCD asserts that an effective and accessible health care system must be efficient, ensuring that system resources are utilized to meet health care needs. The CCD strongly supports the right to health care for all persons regardless of income or health status.

Operation People First participants stressed that any health care reform package should include the following core set of features:

  • Comprehensive, universal coverage
  • Long-term care
  • Coverage for catastrophic illness
  • Personal Assistance Services and assistive technology, including durable medical equipment
  • Ensured access to specialists, drugs, and new medical technologies
  • No pre-existing condition clauses and
  • Parity of coverage for treatment of mental and psychiatric illnesses.

Members of the disability community disagree over the final form that a reformed health plan should take. However, participants expressed a noticeable preference for a single-payer system. "Managed Competition" as a reform model was greeted skeptically. They also detailed several related health maintenance issues.

  • Recreation programs and preventative services for people with disabilities are an often overlooked but important component of a well-rounded mental and physical health care program.

  • Prevention efforts, particularly in such fast-growing disability areas as brain injury and AIDS, need to be intensified. Broad-based education efforts can greatly decrease the rate of disability in these areas.

  • Participants repeatedly stressed the need to break from the traditional "medical model" of disability health care, which emphasizes the treatment of illness through institutional and technological systems dictated by health-care professionals. In its place they advocate the adoption of a "social model" stressing community-based care, independent living, quality of life, and services which are in the control of people with disabilities themselves.

  • Service and health care providers need to expand focus to encompass a "continuum of care" focus on individual needs through better case management, and incorporate new techniques for "futures planning" into services and programs.

  • Training and education of doctors and medical professionals regarding treatment and care of people with disabilities, particularly treatment of people with AIDS or people who are HIV positive, needs to be improved.

Personal Assistance Services

Personal assistance services are a high-priority concern of the disability community. Approximately 17 percent of teleconference participants cited personal assistance services as the single most significant issue facing people with disabilities. As one said, "Equal rights don't mean much if you can't get out of bed."

  • Support is strong among participants for the proposal advocated by the disability rights group American Disabled for Attendant Programs Today (ADAPT). The ADAPT proposal advocates shifting 25 percent of federal Medicaid funds that currently are spent on nursing homes to personal assistance and in-home care programs.

  • Participants stressed that any system of personal assistance services must be community based and consumer driven, providing users of personal assistance services the greatest latitude to choose appropriate and effective programs.

ADA Implementation and Enforcement

An important outcome of the project involved the collection of impressions on the success and effectiveness of the Americans with Disabilities Act and the identification of areas of difficulty in its implementation and enforcement. The consensus among project participants was that not enough resources are being devoted at either state or federal levels to implement and enforce the ADA. A number of general issues related to ADA implementation and enforcement were identified.

  • There is an overwhelming need for wider dissemination of information about ADA to businesses, local and state governments, and individuals with disabilities. Practical and specific information must be provided to employers on how to make reasonable accommodations which address the needs of specific disabilities in a variety of work settings. Such information must be made available in bilingual and alternative formats accessible to non-English speaking Americans and people who are blind and those with cognitive and learning disabilities.

  • Methods need to be developed to identify and sanction responsible and reputable providers of information on ADA compliance. Currently, too much conflicting and inaccurate information is being provided by individuals seeking to make money from well-intentioned but uninformed employers.

  • Too many employers are not taking forceful, proactive steps to comply with ADA and instead are waiting to see if the law will be enforced. Strong encouragement from the highest levels of government is critical to ensure that everyone understands America is committed to the full, speedy implementation of ADA. Additionally, Americans need to be informed that compliance with the law is not only a duty but will deliver many benefits, including an expanded market of consumers and a more productive and higher quality workforce.

  • Across the nation, from New York City to southern Oregon, many small employers and places of public accommodations continue to ignore the law. Special initiatives such as expanded tax credits and educational efforts need to be targeted towards this sector. This is of critical importance in many rural states like Iowa and Vermont, where small businesses provide the vast majority of employment opportunities.

  • Many state and local governments and elected officials have been slow to respond to ADA obligations, essentially the same ones they have ignored since the passage of Section 504 of the Rehabilitation Act of 1973. Many disability leaders are frustrated and exasperated by what they perceive to be foot dragging on compliance with Title II of the ADA.

  • Local governments, frequently strapped for resources, desire federal assistance earmarked for barrier removal.
  • Greater efforts need to be made to educate employers on how to accommodate people who have AIDS or are HIV positive and people who have mental, cognitive or psychiatric disabilities. These groups remain among the most discriminated against in America. Often, simple measures such as the adoption of more flexible work schedules to accommodate particular needs are all reasonable-accommodation standards require.

Jobs and employment issues are at the heart of the ADA and are critical to all people with disabilities. In recognition of this, Title I of the ADA prohibits discrimination in employment against people with disabilities. Disability advocates made it clear that full equality for people with disabilities will not be possible until they are fully integrated in the workplace as equal partners, co-workers, government officials and independent business persons. Work guarantees income and provides the cornerstone of independence and dignity for all people with disabilities. Employment of people with disabilities, furthermore, represents a dramatic enrichment of society in general, as it supplies a new source of qualified, trained workers, enhances workplace diversity, and removes dependents from the welfare roles and places them onto the tax rolls. Participants identified specific issues related to employment.

  • Employer, union, and the worker with a disability must engage in discussions to resolve conflicts between ADA and collective bargaining agreements. Occasionally, the union's responsibility to represent all of its members under collective bargaining procedures--on issues like job-sharing or seniority, for example--can infringe on the rights of individuals under the ADA.

  • States need to review their workers' compensation laws to ensure that they are in harmony with the ADA.

  • Alternative methods of dispute resolution and mediation need to be developed in order to speed the enforcement and implementation of ADA.

  • DOJ and EEOC need larger staffs devoted to ADA enforcement and claims investigation. Also needed: (1) screening mechanisms to quicken the response time for DOJ and EEOC to act on legitimate complaints, and (2) a reduction in paperwork required to file a claim under ADA.

Title II, Subpart B of the ADA requires that transportation programs and services of local, state and other nonfederal government agencies be accessible to people with disabilities. Despite the mandates included in Title II of the ADA, people with disabilities across the country still are finding transportation a significant obstacle to employment, socialization and the economic marketplace. More than 20 percent of Operation People First participants named transportation as one of the most significant issues facing people with disabilities.

  • Transportation issues rank particularly high in rural areas like Iowa, Wyoming, and upstate New York, where long distances and thin population concentrations make convenient and accessible public transportation scarce yet correspondingly critical. Though ADA mandates existing systems to be accessible, the real problem, particularly in rural areas, is that often no transportation systems exist at all.

  • Paratransit systems are not complying with ADA standards. One Tennessean noted that in her area of the state a 14-day lead time was required to schedule a simple ride to the grocery store.

  • As mainline urban transit systems are made accessible according to ADA standards and urban paratransit is only provided to those who cannot use the mainline system, people with disabilities must accept their responsibility to transition from specialized paratransit systems to general mass transit.

Title III of the ADA covers a broad spectrum of entities: places of business and commerce, educational institutions, recreational facilities and social service centers. It requires that readily achievable alterations to existing facilities be made, that all new construction of facilities and most alterations of existing facilities in public and commercial facilities be accessible to people with disabilities, and that places of public accommodation use auxiliary aids and services for effective communications.

  • Compliance with the accessibility requirements for public accommodations continues at a slow, spotty pace. A leader from the deaf community, for example, noted that more than 90 percent of the motel and hotel facilities he visited in Oregon have not provided auxiliary aids and services for people who are deaf.

  • Other participants noted that compliance in public accommodations might approach no better than 20 percent. And some participants indicated that in their states major new construction projects are being erected that do not comply with ADA accessibility guidelines.

  • Greater efforts need to be made to encourage builders and designers to adopt universal design standards.

  • Despite the clear language of ADA, people with disabilities continue to find establishments refusing to allow entry of service animals and guide dogs.

  • The cost of interpreter services was an often cited problem in providing access to public accommodations for people who are deaf.

One of the most significant barriers to the full inclusion of many people with disabilities is the lack of a fully responsive and easily accessible communications network. People with hearing and visual disabilities in particular often find access to information and communication a critical, though unnecessary, obstacle to employment, social interaction, and access to basic services like medical care.

  • While the deployment of a high-technology fiberoptic telecommunications system--featuring high-quality interactive information retrieval and communications, and enabling people to work, shop, socialize and learn at home--promises dramatic improvement for many persons, disabled and non-disabled alike, in the quality of living, the builders of these systems must take note of certain important principles. At minimum, any new interactive communications system must be accessible to people with all kinds of disabilities and must never be used to circumvent accommodation requirements or to keep people with disabilities segregated in their homes.
  • Because of ADA, the demand for interpreter services for people who are deaf or hearing-impaired has greatly increased. This has placed a tremendous strain on interpreter resources in many places, which already are stretched thin due to the scarcity of competent, trained interpreters. Steps need to be taken to resolve this problem. Suggestions include expanded funding for interpreter training, better certification standards to ensure the quality of interpreter services, and encouraging schools and universities to include ASL as a standard part of their language department curricula.

  • The responsibility to provide interpreter services to facilitate interactions between people with hearing disabilities and doctors and other health care professionals needs to be fully understood by the health care industry.

Removal of Barriers to Work from Social Services and Creation of Employment Opportunities

Unfortunately, people with disabilities continue to be unemployed at a shockingly high rate. According to the Census Bureau, 70 percent of all working-age persons with disabilities are unemployed. And the vast majority of those who do have jobs are underemployed. The reasons for this unacceptably high rate of unemployment are multiple and complex. Confusing rules, arcane procedures, and disincentives built into government programs and services like Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), Medicaid, and welfare create tremendous barriers for people with disabilities and must be addressed.

There are myriad regulations and rules built into the complex network of social services programs which have the perverse effect of discouraging otherwise qualified and eager job seekers with disabilities from obtaining employment. These rules must be changed so that people with disabilities can enter the workforce without fear of losing critical health care benefits or supplemental income.

For example, restrictions and regulations of programs such as Vocational Rehabilitation often have the adverse effect of discouraging people qualified and able to work part-time from seeking employment and training. A better understanding and a quicker implementation of the 1992 Amendments to the Vocational Rehabilitation Act would help to alleviate this problem.

Disincentives are a paramount reason behind the stubbornly high rate of unemployment of people with disabilities. Of those participants who indicated that jobs and employment were a primary concern, nearly 30 percent cited disincentives as the most significant obstacle preventing people with disabilities from entering the workforce. Because of their often substantial health care needs, people with disabilities are frequently reluctant to jeopardize their access to government-provided benefits or supplements. Those with mental disabilities are particularly sensitive to the problem, as the costs of necessary medication are high and the earnings threshold for losing Medicaid or Medicare benefits is low.

Disability advocates are united in the belief that by removing disincentives to work, people with disabilities can get off the welfare rolls and onto the tax rolls, and contribute their fair share to the enrichment of society.

  • The fear of losing Medicaid and Medicare benefits constitutes perhaps the single greatest barrier to employment for people with disabilities. Universal coverage for health care regardless of employment status would go a long way towards removing barriers to work and opportunities for career advancement.

  • With SSI and SSDI the regulations governing the proper dispensation of disability benefits under Social Security, especially its Work Incentives program, are so complex and convoluted that even persons working for the Social Security Administration do not understand how to properly administer them.

  • In some states, access to vocational rehabilitation services is restricted to persons capable of working a certain minimum number of hours per week. People with certain disabilities, such as psychiatric disabilities or AIDS, often are only able to work part-time and thus sometimes fail to meet this requirement. Because of their disability, they are unfairly closed out of programs that would make them more employable workers. These program restrictions need to be reviewed on a state-by-state basis.

  • People with disabilities need assistance in all areas of employment, including education and vocational training for proper job skills, increased supported employment opportunities, and a greater effort by employers to make reasonable accommodations for people with both physical and mental disabilities.

  • More focus must be placed on assuring quality employment and real career opportunities for people with disabilities, rather than simple make-work occupations.

  • There is a need for financial assistance for independent businesses owned and operated by people with disabilities. The Small Business Administration should ease access to business loans for people with disabilities under the Handicapped Assistance Loans program.

  • People with disabilities have a right to participate in business entrepreneurship, and must therefore have equal access to business loans and government contracts. An equal share of government contracts should be made available by amending existing minority contracting rules to include people with disabilities (Section 8A Set-Asides).

  • Any government-sponsored jobs program, such as a national job corps, or broad-based worker retraining program should specifically target people with disabilities.

  • The Clinton administration should continue to set an example for states and the private sector by appointing qualified individuals with disabilities to high-ranking administration positions.

Mental Health Issues

People with mental, cognitive, and psychiatric disabilities constitute perhaps the single most persecuted and least understood group of individuals in the disability community. The stigma associated with mental illness remains an oppressive obstacle to employment and integration, hampering the efforts of people with mental disabilities to enter the workforce, attend schools and contribute their talents and energy to society.

The greatest programmatic concern of participants involved with mental health issues was establishing parity in the provision of health care services for treatment of mental and psychiatric illness. Currently, state Medicaid programs cap funding for mental health treatment at levels so low they do not come close to meeting the needs of most persons requiring such treatment. Levels of coverage for treatment of mental disorders are dramatically lower than those for comparable physical disorders. Participants in the project strongly support efforts by Vice President Al Gore's wife, Tipper Gore, and others serving on the White House Health Care Reform Task Force to expand coverage for mental disorders.

  • Many attitudinal barriers towards people with mental disabilities can be overcome by concerted efforts to educate employers and the community at large, and by better integrating people with mental disabilities into the community to increase society's comfort level with and understanding of them.

  • Greater efforts must be made to educate employers about their responsibilities under ADA to develop appropriate reasonable accommodations for people with mental and psychiatric disabilities. Often, this simply means encouraging employers to provide flexible and part-time work schedules for employees who need them.

  • People with all kinds of disabilities are at a disproportionately high risk of alcohol and substance abuse problems. Greater treatment and rehabilitation efforts are required to treat these problems. The frequently encountered bias against inclusion in these programs of persons with disabilities, such as those who have AIDS or are HIV positive, must be overcome.

  • Procedures involving the involuntary institutionalization and treatment of people with mental and psychiatric disabilities must be closely scrutinized, with the presumption that such action is almost always a violation of the civil rights of those persons.

Advocacy, Coalition Building, and Empowerment

Empowerment rests at the heart of the disability-rights movement. People with disabilities seek to free themselves from the chains of a paternalistic social service system and assume the full range of rights and responsibilities that accompany the status of equal citizenship. Participants repeatedly stressed a concern that people in the disability community were not getting sufficient information about their rights under ADA, and thus were not taking proper advantage of the opportunities opened up to them by the law.

  • There is a powerful need to expand efforts to educate and train people with disabilities about their rights and responsibilities provided under ADA.

  • Training and development of self-advocacy skills is also critical to the further empowerment of people with disabilities. In many places across the country, particularly in many rural areas, self-advocacy groups are ineffective or non-existent.

  • Coalition building and increased cooperative efforts must be encouraged among different constituencies in the disability community. As one participant noted, "None of us have the Cadillac of disabilities."

  • Empowerment would be strongly bolstered by the formation of a broad, national organization for people with disabilities,

    similar to AARP, NOW and the NAACP, that would provide a focus for united advocacy efforts on a national basis and support full-time lobbyists in Washington to represent to Congress and the federal administration the needs of all people with disabilities.
  • People with disabilities must be recruited to oversee and implement programs and services, like state Vocational Rehabilitation agencies and special-education programs, targeted towards the disability community.

  • A greater emphasis must be placed on consumer choice and satisfaction in the delivery of services to people with disabilities. It was suggested that government undertake a nationwide research project designed to measure consumer satisfaction with disability programs and services.

Education and the Schools

High quality education and vocational training from pre-school to post-graduate levels is the best way to ensure that people with disabilities integrate effectively into the economic marketplace and become full citizens and active, productive members of society. This can be most effectively achieved through the inclusion of people with disabilities into mainstream education.

Currently, the national drop-out rate for children with disabilities hovers near 35 percent, and literacy rates for students with disabilities are well below their peers without disabilities. Aggressive measures must be developed and implemented by professional educators to reverse the unacceptably high drop-out and illiteracy rates and prepare young adults with disabilities to enter the workforce, get post-graduate vocational training, or go to college.

The main aim of persons concerned with education issues and of parents, is to facilitate full integration of children with disabilities to the greatest extent possible into the classroom. Most participants stressed that integration, or "inclusion," is the best way to raise the self-esteem and self-expectations of children with disabilities, and to accustom their peers to work and live with them side by side throughout their lives.

  • Efforts to achieve full inclusion require a better understanding of the principles behind meaningful mainstreaming, and should be expanded beyond the traditional classroom to include participation in music and gym classes, recreation programs, and the whole range of extracurricular activities that are a fundamental part of a child's educational experience.

  • Full inclusion requires the provision of trained specialists to assist teachers in the classroom. As New York State has demonstrated, it is possible to take great strides towards integration of special education students into the mainstream by abolishing special education classes and reassigning special education teachers to provide schoolwide assistance, training, and consulting.

  • The special concerns of particular disability constituencies, such as people who are deaf and hearing-impaired, learning disabled, blind and sight impaired, and severely disabled, must be taken into account as the mainstreaming process is carried forward. Many representatives of the deaf community, for example, are concerned that education programs designed for persons with hearing will inevitably disadvantage those without hearing. In such circumstances, some fear, inclusion of children who are deaf in mainstream programs will result in a loss of the mastery of American Sign Language and of the unique culture in the deaf community.

  • Similarly, some participants were concerned that an overemphasis on mainstreaming will disadvantage students with highly specialized needs, like children with severe retardation, who may not receive the focused attention in the regular classroom that they would in specially designed programs.

  • Transition programs must be developed and implemented for graduating students with disabilities. Too often, these students graduate from a social environment in which they received a great deal of attention and counseling, only to be thrust into the world at age 18, unprepared to work and cut off from any vocational aid, counseling, or assistance.
  • High school students must be better prepared to enter the job market after graduation. Internship programs, work-study programs, vocational training programs, and business partnerships with schools have proven highly successful where they have been implemented and need to be expanded to serve all students with disabilities.
  • Adult education and vocational training programs need to be expanded to allow more persons with disabilities to acquire the skills necessary to take advantage of their right to compete for jobs as guaranteed by the ADA's employment provisions.

Attitudinal Change

Stigma and discrimination are being fought by all people with disabilities. This is the key to effecting a transformation of the role of people with disabilities in the community and society.

  • The media can become a powerful and effective tool to change attitudes towards people with disabilities. Coverage should emphasize the empowerment of individuals, rather than focus on the human-interest side of disability, or overstate the costs and problems of disability and the implementation of ADA. It is primarily the responsibility of activists and advocates in the disability community to lead the campaign for effective, truthful, and positive coverage of the issues affecting people with disabilities.

  • Employers must be educated that people with disabilities have skills and alternative methods of accomplishing job tasks effectively. For example, people who are blind can often work just as effectively as sighted persons by taking advantage of voice and braille communication techniques.

  • In discussions of health care reform, such as took place recently over Oregon's new health care plan, it is often assumed that people with disabilities are "unhealthy," and thus deserve a low-priority for treatment. However, people with disabilities are often perfectly healthy and have the same life expectancy as people without disabilities. The common correlation between disability and sickness must be replaced by an understanding that all people deserve equal care and attention to their particular needs.

  • Efforts to overcome stigma against people with disabilities must begin early and be pursued aggressively through such steps as school textbook reform, sensitivity training for elementary, junior high, and high school students, greater integration and assimilation of people with disabilities in all community activities, positive media coverage, and the positive representation of people with disabilities in advertising campaigns, movies and television programs.

  • Attitudes of people with disabilities must also change. People must recognize that with rights also come responsibilities, and people with disabilities must accept their responsibility to become fully equal citizens and contributors to a better America.

Minority Issues

For minority persons with disabilities, many of the problems faced by other persons with disabilities are doubly compounded. Minorities with disabilities are often discriminated against in the delivery of services. The dissemination of information to minority communities is even more inadequate than to the general disability community, and many minorities living in urban, inner city environments find even fewer resources are available to meet their needs.

Native Americans with disabilities also face distinctive obstacles. Because of the legal relationship between the Indian nations and the federal government, provisions of the ADA do not extend to many Native Americans. Special initiatives emphasizing cooperation with Native American leaders are needed to ensure that the benefits of ADA are extended to all persons with disabilities.

V. CONCLUSION AND RECOMMENDATIONS

Disability Action Plan

As a nation, we lack a coordinated and comprehensive policy towards disability that accords with the ADA. The ADA has been a major first step towards creating a structure of empowerment for people with disabilities to maximize their potential. But it is not by itself enough. America needs a comprehensive disability policy. Laws, regulations, programs, and services on both the federal and state level need to be revisited to ensure that they are philosophically and programmatically in tune with the spirit and letter of ADA. Everything should be put on the table: state workers' compensation laws; health care reform; Social Security Administration disability programs; housing services; transportation services; welfare programs; tax code provisions related to disability; vocational rehabilitation; developmental disability laws and programs, etc. They should all be reworked as needed to develop a coordinated, philosophically consistent national disability policy that empowers people with disabilities and puts them in control of their own destiny. The fragmented array of services now available need to be coordinated and made more easily accessible to people with disabilities. Government jurisdiction over disability needs to be rationalized and ordered to ensure clear communication of national priorities and goals.

The primary recommendation of this report is that the federal government undertake the development of a coordinated, comprehensive national disability policy that is driven by and consistent with the ADA. This policy should be developed over the next several years, complete with legislative language, regulatory and programmatic change, and budget recommendations. It should then be presented to the President and the Congress. This task is totally within the purpose, scope and charge of the President's Committee and the National Council on Disability. The President's Committee and the Council would need no additional authority and could commence work on the task immediately.

The President's Committee on Employment of People with Disabilities advises the President and the federal government on policy and programs to develop maximum employment opportunities for people with disabilities, and provides the nation with public education and cooperation among organizations and agencies to achieve this end. Consistent with this role the President's Committee is prepared to work cooperatively with the National Council on Disability in carrying out the primary recommendation of this report. The President's Committee will also play a role, as appropriate, in the implementation of recommendations enumerated below.

The following additional recommendations are based on the comments made by Operation People First participants and would support the formation of a national disability policy. To assure continued progress for people with disabilities, these recommended actions should immediately be taken by government, business, media and the disability community. Only by pursuing an aggressive, forward-looking agenda for change will the most important goals of ADA and of people who support fairness, equality, increased productivity and full inclusion of all Americans be reached and the intent of Congress fulfilled. President Clinton has pledged to revolutionize American government by empowering individual citizens in the governmental process. The following steps represent an immediate agenda designed to put People First.

ADA Implementation

Though significant advances have been made in many areas due to ADA, participants in nearly every state complained of a slow response by state and local government officials to implement and enforce the law, and by the business community--particularly small business--to comply with its provisions.

Numerous states were specifically named by participants as taking a "wait-and-see" attitude towards ADA enforcement and implementation.

Following is a list of recommendations for the federal government to increase effectiveness and efficiency of the ADA:

1. Improve and increase efforts to educate employers and state and local government officials about ADA.

2. Provide strong leadership from White House on ADA enforcement.

3. Develop, refine and better communicate methods of "reasonable accommodation," in particular, the accommodation needs of people with mental health conditions, developmental disabilities, learning disabilities, brain injuries, chronic fatigue syndrome and multiple chemical sensitivity.

4. Develop and institute alternative methods of dispute resolution and mediation to speed the enforcement and implementation of ADA.

5. Provide larger staffs for DOJ and EEOC for ADA enforcement and claims investigation.

Recommendations to Government

Government should lead by forming partnerships with business, state and local governments, the schools, and the disability community to create integrated programs that meet the needs of everyone.

Government could also facilitate employment by establishing a national database or archive of job opportunities and training programs for people with disabilities.

The current administration should immediately take steps: to change Medicaid-waiver procedures to allow states to pursue innovative strategies for more community based services for people with disabilities, and to mandate the closing of inappropriate, dehumanizing institutions for people with developmental and psychiatric disabilities.

Special initiatives need to be designed to improve the whole spectrum of services available in rural areas. In particular, more transportation services should be established for people with disabilities.

Likewise, initiatives targeted at other underserved populations, including elderly persons and minorities with disabilities need to be developed.

Recommendations to Business

Business should take proactive steps to comply with the ADA and to recruit, hire, train, and retain people with disabilities.

Employers should seek out more information on ADA and become better informed about different kinds of "reasonable accommodations," particularly for people with cognitive and psychiatric disabilities. The Job Accommodation Network (JAN) sponsored by the President's Committee on Employment of People with Disabilities is a valuable resource which can play an important role in this educational process.

Recommendations to Media

The media should seek to cover people with disabilities in a responsible, dignified manner, and eschew coverage which condescends, pities, or demeans people with disabilities.

The media should focus coverage of people with disabilities on positive accomplishments, successful integration into the mainstream, and the civil rights struggle of ADA. People with disabilities must be covered as people first, not as representative "disability types."

Film and television media should seek to include people with disabilities as real, central characters in programming. People with disabilities need to be seen as normal, capable, three-dimensional individuals with human needs and human problems, including involvement in romantic and sexual relationships.

The advertising community should include people with disabilities in advertising imagery and media. The 49 million Americans with disabilities represent an enormous potential market to which the advertising and business communities should appeal directly.

Like every other sector of the employment community, the media should provide opportunities for qualified people with disabilities to work as reporters, anchors, editors and correspondents.

Recommendations to the Disability Community

People with disabilities should empower themselves by becoming fully educated about their rights and responsibilities under ADA, and seek actively to defend those rights and advocate on behalf of themselves in all public forums, including in the media and in governmental arenas.

People with disabilities should consider greatly expanding an existing national organization, or creating a new one, to advocate their civil and social rights, Although various disability constituencies have excellent advocacy representatives in Washington, there is no organization with the staff and the responsibility to represent the disability community as a whole.

All disability constituencies and organizations should work together, building effective coalitions and presenting a united front in order to be maximally effective in political struggles at all levels of government, particularly the state and local levels.

VI. APPENDICES

Appendix A: Statistical Summary

Top Priority Issue Areas: No. of Times Listed First Percentage
ADA Enforcement and Implementation 403 38.5%
Health Care * 354 33.8%
Empowerment and Advocacy 281 26.8%
Employment 280 26.7%
Education 221 21.1%
Personal Assistance Services 179 17.1%
Transportation 147 14.0%
Housing 145 13.8%
Mental Health 103 9.8%
Attitudes 101 9.6%
Work Disincentives 94 9.0%
Assistive Technology 83 7.9%

* While health care was not the issue most often identified first by the participants, it was the single most often mentioned issue in all of the teleconference calls. Over 80 percent of the participants mentioned health care for people with disabilities as one of their issues of concern.

Appendix B: Comments on the Teleconference Format and Methodology

1. Teleconference format refinement: As the project proceeded, some refinements were made in the teleconference format in order to improve the quality of discussion and enhance the effectiveness of the calls. In the first few teleconferences, the President's Committee attempted to conduct an informal poll of six important issues affecting people with disabilities, including health care, personal assistance services, new telecommunications technology, and the federal budget deficit. However, in response to a sense of unease among participants in casting simple yes-no votes on highly complex issues like health care, the poll was dropped from the teleconference format.

2. Inclusion of people who are deaf: Including people with deafness provided a particular challenge for participation in the telephone conference format. In general, such individuals used the services of an interpreter to facilitate their participation in the teleconference. The President's Committee paid the costs of the interpreter when it was requested. However, due to the scarcity of qualified interpreters and short time-frames, individuals often found it impossible to arrange for interpreter services in time. In these cases, the President's Committee interviewed individuals with deafness separately by TDD or through a relay service. The President's Committee recognized that this was a sub-optimal solution to the problem of full inclusion of persons who are deaf, and is seeking better ways to ensure full participation.

3. Inclusion of people with visual disabilities: While the telephone conference call format presented no problems for people with blindness or limited visual abilities, the speedy exchange of background materials in alternative format did create certain difficulties. While the President's Committee possesses the technology to create materials in alternative format, because of equipment breakdown and fast turnaround time, such materials were not always available in a timely manner. The President's Committee will continue to seek better ways to accomplish these tasks in the future.

Appendix C: The People of Operation People First

The Operation People First project was initiated by the immediate-past Chairman of the President's Committee on Employment of People With Disabilities, Justin Dart.

The following President's Committee staff were assigned to the project:

Rick Douglas
John Lancaster
Maggie Roffee
Lori Peterson
Russell Covey
Jill Gathmann
Allen Gray
Robin Hershman
Executive Director
Executive Assistant to the Chairman
Executive Assistant to the Chairman
Executive Assistant to the Chairman
Administrative Assistant to Chairman Dart
Project Coordinator
Project Coordinator
Project Coordinator

For the sake of brevity, we have not included Appendix C on our web site. Ir you would like a copy of Appendix C, which includes a listing of approximately 1,200 leaders from the disability community who participated in the Operation People First teleconference calls, please contact the President's Committee on Employment of People with Disabilities.



Letter from the President's Committee to the President

28 March 1994

The President
The White House
Washington, DC 20500


Dear Mr. President:

Enclosed please find our report -- Operation People First: Toward a National Disability Policy. The project was undertaken in the spirit of your Presidency, that of bringing all of the American people, including people with disabilities, into the decision-making process of government and that of putting people first. It was conducted by the previous Chairman, Justin Dart, and the staff of the President's Committee on Employment of People with Disabilities.

This report provides you, and the nation, findings and recommendations toward the development of a national disability policy. It is based on over 60 teleconference meetings with more than 1,000 disability-community leaders in all states and territories. I concur with the report's findings and recommendations.

As a result of this project, we have determined the need for a cohesive national policy on disability. The nation lacks coordinated and comprehensive policy and law which are consistent with and supportive of the intent of the Americans with Disabilities Act and which bring people with disabilities into the political, economic and social mainstream of our culture.

The development of a national disability policy would come at a unique time in our nation's history. The ADA provides the legal framework for achieving equality and empowerment for America's 49 million citizens with physical and mental disabilities. Coordinated policy and programs consistent with the purposes of ADA would establish the foundation on which individuals with disabilities can build in reordering our society from one which fosters exclusion, dependence and paternalism to one which promotes inclusion, independence and empowerment.

Operation People First: Toward a National Disability Policy is an important step forward in this journey. It is important not just for the recommendations it provides and the national leadership network it creates, but also for the process through which it was developed. All factions of the disability community were invited to participate, including representatives from frequently excluded groups like psychiatric and head-injury survivors and people labelled mentally retarded. All were represented. All spoke. All were listened to with attention, consideration and respect. We did more in our teleconferences than talk about inclusion; we practiced it.

Operation People First: Toward a National Disability Policy provided a forum for over a 1,000 disability leaders in the 50 states and territories to meet. They identified and discussed key issues. They represented the views of their organizations and constituencies in a dialogue designed to shape public policy on matters of critical importance to them. Our teleconferences across the country created a national network which now numbers over 6,000 disability leaders.

The President's Committee activated this national network on the single most important issue facing people with disabilities -- health care reform -- by holding a nationwide teleconference call on November 22, 1993 to explain the implications for people with disabilities of your health care proposals. As with health care, we will continue to focus on issues and policy in a way that will build the bridge to financial independence through employment for people with disabilities.

Operation People First: Toward a National Disability Policy represents the beginning of what will be, and must be, an ongoing commitment to change. We have identified what we need to do. Now we need to do it.

Respectfully submitted,


Tony Coelho
Chairman


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Page last updated on March 20, 1997 by Mary Kaye Rubin


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