The Grantmaker Forums on Disability Policy

A discussion among representatives of philanthropic organizations and representatives of the federal government’s executive branch who lead disability programs and agencies.

Forum Proceedings

June 6, 1995
Washington, D.C.

The Grantmaker Forums on Disability Policy is a joint project of The Funding Partnership for People with Disabilities and Philanthropy and the Public Sector, a special project of the Council on Foundations. It is made possible by the support of The Annie E. Casey Foundation, The Dole Foundation for Employment of People with Disabilities, Mitsubishi Electric America Foundation and The Robert Wood Johnson Foundation.

Presentation Summaries

Paul Hearne, President, The Dole Foundation, reviewed the tremendous changes in disability policy and in perceptions of people with disabilities in the 20th century. In the 1930s, for example, the Social Security Administration defined disability as “unable to work” while, at the same time, judging many people with work disabilities to be ineligible for services. Not until the 1970s did the greatest change begin to occur. This was marked by Section 504 of the Rehabilitation Act, which contains the phrase, “you shall not discriminate.” This signaled the “beginning of the beginning” of change for Americans with disabilities. Demonstrations in major cities across the nation in 1977 led to the signing of regulations that prohibit discrimination based on disability.

Mr. Hearne described the decade from 1970 to 1980 as a period of very rapid change. Part of this change was the rise of the independent living movement and self-help services in employment. Mr. Hearne believes that people with disabilities then began to take control of their own fate. During the 1980s people in these movements began to identify issues that would have real impacts on their everyday lives; impacts like removing barriers to public transportation so that they could go to work like other Americans. In addition, people with disabilities began to coordinate and organize throughout the country to work on these issues.

As Mr. Hearne and others began work on amending the Civil Rights Act of 1964, they came to the realization that it wasn’t just a matter of problem-solving. It was, he said, also a matter of society’s perception of people with disabilities. They were perceived as being outside the normal realm of society and lacking assess to remedies available to other citizens. Although amending the Civil Rights Act failed several times, Mr. Hearne pointed out that it raised people’s level of consciousness about their rights.

The JM Foundation sponsored a first-of-its-kind grantmakers’ conference on the empowerment of people with disabilities in the early 1980s with the intent of involving other foundations in disability issues. Representatives from approximately 20 foundations attended the forum along with disability activists, including Ed Roberts, who created the independent living movement. Mr. Roberts wanted to show those attending the conference that issues as they perceived them weren’t the actual issues. “This conference made us both realize what the problem was,” said Mr. Hearne. “Again, it was attitude.”

The prevalent attitude held by foundation staffs at that time, and as late as 1987, was that disability issues were really health issues. Mr. Hearne explained how this attitude blocked any real progress grantseekers could have in applying to foundations to support programs related to helping people with disabilities become more independent and productive citizens. He described, for example, the typical foundation response to an application from a disability program seeking funding. The foundation would reply that while it covered employment issues, it didn’t “do” disability. The same situation existed in housing and other issues. “What people couldn’t grasp,” Mr. Hearne explained, “was that issues relating to people with disabilities were really integrated into all of the other issues addressed by grantmakers.”

By 1990, The Dole and JM Foundations had created The Funding Partnership for People with Disabilities, a consortium of grantmakers that pledged to fund disability proposals. The original 20 members of The Funding Partnership came to understand that disability was “not only a valid part of all our categories; it’s an issue that we have to involve ourselves with.” By the time The Funding Partnership announced its second round of proposals in 1993, its membership had grown from 20 to 30 foundations and corporate giving programs. That same year, the Partnership created a video and made it the centerpiece of a session at the Council on Foundations conference. The dialogue created at that conference continues to this day.

What do people with disabilities want? While Mr. Hearne expressed regret over not being able to provide a specific list, he asserted that people with disabilities will be closer to what they want if foundations include them in all their categories. This means that foundations, even considering today’s limited resources, should try to fund the small-but-vital disability-related programs throughout the country. “People with disabilities,” he remarked, “want to be a part of the process and want their programs to be evaluated in the same way as other programs that reach their goals.”

The idea of outcomes is new but growing in the disability community, reported Mr. Hearne. He laughed as he wondered aloud whether past programs had no outcomes, or if they did, whether these outcomes had anything to do with what they originally wanted them to be. He expressed approval that disability-related programs will, and should, be evaluated on their merits and outcomes just like all other programs. He said that these programs are also being evaluated to find out if they, in fact, do serve the people they said they would serve; if they do reach the outcomes they claimed; and if they meet a need that, in the larger picture, means true progress.

Mr. Hearne applauded current efforts and growth and stressed again that this is a time of very rapid change. The role foundations will play in the disability movement will become more integral and crucial over the next few years. [Hearne full text]

Kate Seelman, Ph.D., Director, National Institute on Disability and Rehabilitation Research (NIDRR), Office of Special Education and Rehabilitative Services, U.S. Department of Education, described how, at NIDRR, research is conducted and understood in terms of “domain.” These domains are examined as they relate to the whole person in society including medical issues, community integration, technology and other relevant domains. She quoted the late Irving Kenneth Zola, professor and sociologist at Brandeis University, who argued that, “an exclusively special needs approach is a short-term approach.” He suggested more universal policies that recognize the entire population is at risk. “Without such a perspective, ” according to Zola, “we will further perpetuate a segregated, separated and unequal society, a society inappropriate to a larger and older changing-needs population.” Dr. Zola based his argument on the fact that the problems of disability are not confined to a few and are not essentially medically related and that they are “not simply the result of a mental or physical impairment.” He argued, rather, that they are an integral part of the environment of every individual and they are affected by social, attitudinal, architectural, communication and political factors.

Dr. Seelman suggested that the kind of perspective described by Professor Zola accommodates many current trends in American society including the aging population, the increase in poverty, indications of increased violence and abuse and the weakening of the social structure in terms of family and community. These trends have been created by changes in society, economics, medicine and biology. She pointed out that all of these trends impact on disability issues as well as the needs of the larger population. The causes and patterns of these changes and trends include violence and abuse, sexually transmitted diseases, injuries, aging and stress.

Many laws involve what Professor Zola refers to as “normalization,” remarked Dr. Seelman. Such laws include: the Individuals with Disabilities Education Act (IDEA), which emphasizes mainstreaming; the Developmental Disabilities Act (ADD), which emphasizes deinstitutionalization and moving toward supported communities; the Assistive Technology Act (Tech Act), which emphasizes technological supports in society; and laws involving communication and universal design. She commented that the underlying values and commitments — equal opportunity, community integration and the like — are universal for children, adults and the elderly, and for people of diverse ethnicity and different income levels.

These trends and laws coincide with the research at NIDRR that the staff there refers to as the “emerging universe of disability.” Dr. Seelman described the following populations as affected by these trends:

• African Americans and Latinos, who are represented in the disability community in far larger numbers than their percentage of the population;
• children with disabilities, who are frequently the victims of the rising number of child abuse and neglect incidents and are much more likely to be maltreated (45.5 percent) than nondisabled children (22.6 percent). In addition, maltreatment is highly suspect in causing disabilities;
• women with disabilities, who are being maltreated at increasing levels, (40 percent reported sexual abuse and 12 percent reported having been raped); and
• elderly Americans, of whom nearly 1.7 million have been documented as suffering abuse.

Dr. Seelman briefly discussed other issues of concern to NIDRR, including:

• the increase in low-birthweight babies who are later at risk for developing disabilities, and pregnant adolescents who have a high risk of having low-birthweight babies;
• substance abuse, which is also negatively impacting children and that can lead to disabilities related to social, cognitive and language development; and
• the fact that people with AIDS live longer and are moving in greater numbers into the disability community. This is also true of those suffering from the hazardous effects of exposure to environmental toxins that affect the central nervous system.

Dr. Seelman concluded by saying that as NIDRR conducts research into these issues, the agency has identified a need to establish a Research and Training Center around issues regarding the quantity and quality of data for minorities with disabilities and that the areas of violence, adolescent pregnancy and issues relating to women with disabilities may also become the focus of designated research centers. [Seelman full text]

Marca Bristo, Chairperson, National Council on Disability, shared her personal views of the progress of the disability community. She conceded that while society is gradually changing the way it views people with disabilities, it still does not fully empower them. Without this empowerment, decision-makers will not understand the disability rights viewpoint.

The unemployment rate for people with disabilities has remained a constant 70 percent for 20 years, higher for blacks and women. Ms. Bristo believes the biggest challenge is whether or not disability rights advocates will be guided by a new value system of empowerment, independence and economic self-sufficiency. She warned that vested interests, the power of politics and the current economic and political context of the workplace may pull the movement back into the old dependency or income-maintenance models.

While Ms. Bristo admitted that much remains to be done, she pointed to the successes that have been forged and says that “what we have done right has only begun to take hold.” As paternalistic attitudes recede, individuals with disabilities must take responsibility for themselves, she continued. This positive change means that issues of disability may start to be looked at not as issues of disability, but as pieces of other issues such as poverty and housing. In her opinion, the biggest lessons of the ADA are that most people will experience disability in their lifetimes and that disability is a natural part of living.

However, the rise in reporting on the lack of common-sense approaches to implementing the ADA fuels myths about people with disabilities. She views articles that question who is and who is not disabled as a tactic to divide the disability rights movement. She appealed to advocates not to fall into the trap of being divided and conquered on this issue.

Ms. Bristo also cautioned the audience not to allow the backlash against the movement to dismantle the basic supports that people need to survive. In every area of public policy covered in this forum — education, health and employment — she pointed to outdated values guiding policymakers. One of the best examples is in the area of employment, where most programs assume that people with disabilities cannot work. This has led to mere income support, not empowerment and development. Another example is a Social Security system that rewards individuals for dependency and revokes access to health care (Medicaid and Medicare) for those who become independent and maintain employment. These are tremendous obstacles she feels that must be addressed.

“The challenge,” Ms. Bristo said, “is to help grantmakers differentiate between an empowerment proposal and one that supports the status quo.” She urged attending grantmakers to ask themselves if they should fund requests from organizations proposing sheltered workshops instead of supported or competitive employment for people with disabilities, including those with severe disabilities. She suggested that the greatest return on grantmaker dollars is to invest in local efforts that can support the individual growth of that community, whether through community organizing or advocacy, peer support or policy research.

Ms. Bristo told the audience that, as more Federal programs are cut, foundations will be approached to fund status-quo, dependency programs — program models that may be based on paternalism or pity and that focus of what is wrong with an individual. Instead, she urged that these programs be replaced with those that focus on what is right with an individual — with programs based on empowerment-oriented, self-help models.

People with disabilities lost and the outdated public attitudes won in last year’s health care reform debate, said Ms. Bristo. On one hand, people with disabilities “are categorically cut out of health care benefits in most communities unless we stay on the public dole.” On the other, “the current trends toward managed competition are based upon a model of normal that doesn’t recognize most of our needs.”

Ms. Bristo closed with a passionate plea to the grantmakers present to realize that these social and policy issues are far from academic. Rather, they are literally “matters of life and death” for people with disabilities who — in spite of all the gains of the last few years — may not be “quite as equal” or “quite as deserving” as others in the American public’s heart and mind. [Bristo full text]

Judith Heumann, Assistant Secretary, Office of Special Education and Rehabilitative Services (OSERS), U.S. Department of Education, asserted that avenues must be identified to integrate issues affecting children and adults with disabilities into a broader agenda. She also stated that in order to advance public policy that addresses the needs of constituencies and communities, people with disabilities must be included. This means that it is even more important that foundations acknowledge that people with disabilities should be included in all of the work they do than to create special disability-funding categories.

Instead of telling applicants, “we don’t do disability,” Ms. Heumann suggested that foundations look to see how projects submitted by grantseekers representing people with disabilities fit within their current grantmaking categories. A grant for unemployed minority youth, for example, should be open to youths with disabilities. She asked attending grantmakers not to use lack of data as an excuse for not providing funds for needed programs, and she offered to provide data to those who require it. She urged the audience to use this forum for meaningful discussion about existing barriers within their foundations that prevent them from looking at disability-related issues. She expressed hope that they could then help each other to address those barriers.

Ms. Heumann stated that she took her job at the Department of Education to affect policy in the area of disability and to integrate disability-related issues into a broader agenda. She said that while OSERS’ major goal is to implement the special education legislation (IDEA) and the rehabilitation legislation, it also daily tries to integrate disability issues into a broader reform effort in the areas of education and employment. She conceded that while people are committed to this agenda, they do not know how to achieve integration because they think there is something different or “special” about these issues. “Basically,” Ms. Heumann said, “if you are working in the area of poverty, people with disabilities are the poorest of the poor” and in unemployment issues, people with disabilities have the highest unemployment rate.

In the area of education, the mandates contained in IDEA mean that most children with disabilities should be attending regular classrooms in regular schools. She said there were many reasons why this is not happening. One is that special education teachers and regular teachers have very different and separate courses of study, and graduate schools do not train teachers to work in today’s integrated environments.

Ms. Heumann urged grantmakers who fund community education programs to inquire where students with disabilites are educated: inclusive general classroom settings or segregated special education classrooms? She likewise urged funders who support higher education programs to verify that teachers are really being trained to work in the “classroom of today” and said that, while “some children need specially trained personnel who are expert in particular areas,” on the whole, most regular teachers should be receiving training that includes material enabling them to work with most children with disabilities in regular classrooms.

The bulk of children with disabilities in the eductional system are invisible, Ms. Heumann stated. If teachers are not trained to identify students with learning disabilities early, the related problems are exacerbated by the time they are discovered, and the students themselves — who already lack self-esteem because of their disabilities — become even more demoralized. Teacher training can help to control and moderate the disruptive behavior often associated with those learning-disabled children also characterized as “emotionally disturbed.”

Another reason for the existence of too many segregated classrooms is that, similar to the perception about children belonging to racial minorities in the past, “children with disabilities were perceived to be incapable of learning like nondisabled children.” Ms. Heumann expressed concern about the increasing numbers of urban minority children who are identified as needing special education. This results in their removal from inclusive, general classrooms and their placement in segregated settings. She described OSERS’ system of monitoring states with visits every four years to check on implementation of IDEA. If problems are found, corrective action is planned and negotiated with the state to rectify the problems.

Ms. Heumann pointed out that, while many foundations pay attention to the issues of inner-city children, “the issues of the child who has a disability are not within their view.” She suggested that grantmakers use OSERS to educate themselves about data and effective models pertaining to such issues as school finance, inclusion and training, and to then help to educate the community leaders on their boards to effect change in this area.

In Ms. Heumann’s opinion, one of the biggest challenges is to “convince organizations and persons that people with disabilities are capable of doing a great variety of things.” She again compared this situation to that of racial minorities and women in previous decades and stressed the importance of foundations taking steps to include people with disabilities on their staffs and boards. In conclusion, she pointed specifically to the example of employees who become disabled from work injuries and who are then abandoned by their employers. She cited limited company knowledge resulting from a lack of training about best practices in both injury and return-to-work rehabilitation and stated that foundation involvement in this area could have a significant influence on this particular problem. [Heumann full text]

Robert Williams, Commissioner, Administration on Developmental Disabilities (ADD), Administration of Children and Families, U.S. Department of Health and Human Services, described how individuals with disabilities, their families and allies have long called for a “new covenant” with government at all levels. He stated that this covenant means that government should not try to usurp the role of the individual by taking care of people with disabilities and by making decisions and choices for them. This, he said, leads to needless dependency and economic disenfranchisement of millions of Americans with disabilities and their families.

Instead, he advocates for a government that works with people with disabilities to create and support efforts to be fully contributing and truly participating members of the American community. These are the goals behind President Clinton’s new covenant and the focus of Mr. William’s comments on disability policy issues surrounding welfare reform. He expressed concern that while this issue is sweeping the nation, only a few individuals with a clear disability policy perspective are actively working for change. He felt that it was appropriate for disability-rights advocates to address threats to the ADA, the educational rights of children with disabilities, Medicaid and other precedent-breaking issues. At the same time, however, both government officials with disability-policy perspectives and foundations must also give focus and direction to welfare-reform debates in the arena of broad public policy.

Mr. Williams cited three reasons why participation is needed in welfare reform debates at the state and federal levels:

1. 19.1 percent of women on AFDC have disabilities, with a disproportionate number having learning disabilities or mild to moderate mental retardation;
2. 8.4 percent of all women on AFDC have one or more children with disabilities; and
3. 3.7 percent of all such women have other individuals with disabilities living with them and often relying on them to meet their personal-assistance needs.

He stated that most welfare reform proposals and approaches exempt these individuals from training and work. This is a regressive social policy that, he said, sends the message that if you have a disability or are the parent of a child with a disability, you are “worthy to be poor.”

Mr. Williams suggested that the welfare-reform debate offers an opportunity for foundations and the federal government to work together with the states and others to develop and pilot exemplary approaches designed to:

• provide women with disabilities on AFDC, as well as other single parents of children with disabilities, cost-effective job and child care accommodations to enable them to take full advantage of welfare reform’s back-to-work provisions;
• increase the capacity of Head Start programs to serve children with significant disabilities;
• increase the availability of affordable, accessible, high-quality and inclusive child care for all children with and without disabilities; and
• promote seamless service provision between Head Start child-care programs, maternal-health and child-health programs, preschool and education and other services for children with, and those at-risk of, developing significant disabilities.

Mr. Williams discussed three areas of national significance the ADD is proposing to develop and for which it will refine best practices. First, projects will be aimed at demonstrating how best to provide early child development and family support services. This will only happen through coordination between the child care and disability communities, particularly to help children and families in poverty. Second, he announced a new collaboration between ADD and the newly reorganized Child Care Bureau in the Administration on Children and Families (AFC). This collaboration will result in the first child care leadership forum, which will be used to identify best and promising practices leading to early and inclusive learning opportunities for all children. Third, he mentioned another collaboration between ADD and AFC to undertake a joint research and demonstration project to measure the efficacy of training and placing AFDC recipients under a JOBS program to serve as personal assistants and in other related paraprofessional positions.

“Disability, welfare and community development agencies have had little incentives to work together to produce win-win results for both communities,” asserted Mr. Williams. He is convinced that young Americans, both with and without disabilities, must come together to support each other through a national personal support infrastructure. He feels this would offer individuals with significant disabilities of any age and background ready access to ongoing personal assistance and assistive technology.

Mr. Williams described his last conversation with Ed Roberts, a well-known disability-rights advocate who had recently passed away. The two discussed Mr. Williams’ interagency project to develop a personal support infrasstructure and other shared interests involving reaching out to individuals in empowerment zones and enterprise communities to help them spur and support their own businesses. They agreed that lower-income Americans, including those with disabilities, would benefit from being trained to develop micro-enterprise opportunities that provide personal assistance services, ADA barrier removal and the like. He recounted how Mr. Roberts looked at him and said, “Bob, you have finally stumbled onto something that matters. Go do it.”

In conclusion, Mr. Williams encouraged the leaders in the public sector and foundations to seek win-win opportunities: opportunities that can greatly impact the lives of poor people in need of decent and meaningful jobs and people with disabilities who need consumer-driven, personal assistance services to live life to its fullest and to be as productive as possible. [Williams full text]

Susan M. Daniels, Associate Commissioner for Disability, Social Security Administration (SSA), refreshed the audience’s understanding of two programs operated by the Office of Disability at SSA. The first, Social Security Disability Insurance (SSDI), is funded by FICA tax and covers people paying into the Social Security System who become disabled during their work years and retire because of their disability. The second program, known as the Supplemental Security Income program (SSI), is funded from the general revenue fund. This program covers children with disabilities and adults whose disabilities prevent them from entering the workforce.

Although these programs are funded differently and have different levels of benefits, they do have similarities. First, both use the same definition of disability: “You have a disability; because of that disability you cannot work.” Second, both pay cash to individuals who are retired from the workforce; and they use similar eligibility rules. In addition, both programs provide income-maintenance health programs to recipients: Medicare for SSDI and Medicaid for SSI.

Following this introduction, called “Social Security 101,” Dr. Daniels moved into a segment ominously entitled, “If You Think the System is Working, Ask Someone Who Isn’t.” She began this segment by presenting some statistics. Between 14 million and 17 million people of working age are designated as having work disabilities due to an impairment that interferes with work in some way. Of this number, about 10 million (approximately 65 percent) are not in the labor force; hence a staggering amount of people of working age are not in the mainstream economy. An indication that the situation has worsened is a 1994 Lou Harris poll that showed that about 68 percent of people with disabilities polled said they were not employed. A similar poll by Lou Harris in 1986 showed that 66 percent were not employed.

Dr. Daniels noted wryly, “If you don’t work, your chances of living in poverty are astronomical. . . . Even if a person with a disability does work, that person’s chances of being in poverty are four times as great as a nondisabled person.” SSI and SSDI are becoming income-replacement programs at an alarming rate. In the last five years, 43 percent of people with disabilities under 30 have become dependent on Social Security Disability Programs.

With the use of a graphics display, Dr. Daniels demonstrated that Federal expenditures on SSI and SSDI total about $160 billion dollars annually. However, a majority of those expenditures go to programs that she described as “work hostile.” About $69 billion a year goes to cash supports for eligible individuals and about $45.3 billion annually is associated medical care (Medicare or Medicaid). She explained that these programs “don’t encourage work and they don’t support work. They only pay when people don’t work.” In contrast, she said, only a small portion of the total budget ($2.5 billion) goes into training, support and rehabilitation.

In 1984, about $50 billion was spent on Social Security Disability Programs, an amount that, according to Dr. Daniels, swelled to $120 billion a year by 1994. Ironically, this doubling of the budget for Social Security Disability programs occurred during the same decade when great advances were made in such areas as assistive technology, psychotropic medicines for people with mental illness and community-based programs. It is the same 10 years in which civil rights legislation was introduced, enacted by Congress, signed into law by the president and began to be implemented across the country.

While these advances have vastly improved the quality of life for many Americans with disabilities, Dr. Daniels believes that the only way out of poverty is through work. It is absurd to think that people with disabilities aspire to be SSI dependents. If that is so, then what is keeping so many of these individuals out of the workforce? She pointed to two policy barriers that prevent individuals from achieving economic integration: health care and limited earning ability.

The greatest concern regarding health care for people with disabilities is access and adequacy. Access is guaranteed only by unemployment. She argued that those concerned with rising health-care costs must address the current and costly income-maintenance models that penalize work.

Regarding the second policy barrier, Dr. Daniels said that it is a fact that many people with disabilities will not be able to raise an income adequate to meet their needs regardless of the effort they exert. There are two reasons for this: 1) low earning levels due to the kind of work or because of the amount of work the person is able to do; and 2) extraordinary expenses that are not medical in nature and, therefore, not covered by health insurance, which are incurred by many of those with good earning abilities. This can pull an individual with a middle-class income down into poverty.

SSI enrollees will number close to 10 million by the end of this decade, according to SSA actuarial projections. Dr. Daniels referred to comments made earlier during the forum by Bobby Silverstein of the Senate Subcommittee on Disability Policy, who stated that the ADA basically says the major problems related to employment for people with disabilities stem from pernicious, systematic, hard-core discrimination. According to Dr. Daniels, even with civil rights legislation, dramatic and meaningful change is unlikely to occur in this area unless both the access to health care and the adequacy of income are linked to the removal of discrimination in such a manner that choosing to work becomes a rational decision for people with disabilities.

Dr. Daniels concluded by reinforcing the fiscal significance of the social security programs, their importance in the context of disability policy and in the perspective that views people with disabilities as part of the mainstream challenges the country faces with health care and poverty issues. [Daniels full text]

Full-Text Versions of Presentations

A History of Disability Policy and Challenges of Today

Paul Hearne, President
The Dole Foundation for Employment of People with Disabilities

Let’s look at where we have been, where we are, and where we are going. Through tremendous changes in disability policy and in perceptions of people with disabilities, we and our country have traveled far. For example, in 1934, “disability” was defined as “unable to work” by the Social Security Administration (SSA). Even more dramatic is that many people with disabilities were judged to be “ineligible” for services. Section 504 of the Rehabilitation Act as amended in 1973 contained four little words “you shall not discriminate.” These words were the beginning of the beginning of change.

In 1977 — May 3, to be exact — there were some demonstrations in New York, in L.A., in San Francisco, Berkeley (of course) and in Washington, D.C., to promote the signing of the regulations that would strengthen that one little line that said you shouldn’t discriminate based upon disability. After folks sat on the lawn of Califano’s house, those regulations were signed.

So really, we looked at a very rapid period of change from — I would say — the early ’70s until around 1980, when folks with disabilities began to rise to the surface, began to generate structures such as the Independent Living (IL) movement, such as self-help-in-employment programs, such as a look at the service provisions that they received in the context of wanting to change their own fate and be in control of that — and that really began to put people with disabilities on the map.

We went from that to the ’80s — a time, I think, when there were a lot of tremendous ideas and a great deal of lip service — a very slow process, when we began to look at how we could coordinate and organize persons with disabilities in the country. We began to take a real look at services that would begin to have a real impact. These were the days when the annual meetings of the President’s Committee on Employment of People with Disabilities went from being “here is a real, live employer — this person actually works and has hired someone” and a job fair that really wasn’t a job fair — to being where real, live employers were working folks on working committees and aiming to hire real people with disabilities. They were beginning to look at the issues for real (to look at the issues on the merits from that point on). Then real, live problems began to arise.

I remember having a conversation in 1980 with New York City Transit Authority personnel and disability transportation expert, Jim Wiseman, saying that if we could get on the bus, we could go to work. We wouldn’t have to spend $100 each way for what I euphemistically called an “invalid” coach; we could take the bus and the subway and go to work like everybody else. And we heard them say, “Why should we do that (install lifts on buses)? We’ve never seen anyone on the bus.” And then we began to try to explain the Catch-22 existing in that picture. It was a time when we began to work out the issues.

Shortly after that we began to look at amending the Civil Rights Act of 1964 to include people with disabilities because we saw more and more clearly that it was not only an issue of sitting down and working out solutions to problems, but it was also an issue of perception. “People with disabilities” were individuals that were somehow outside the normal realm of society, outside the normal legal remedies that they should be able to have like anybody else, and were more or less individuals that should sort of be happy with what the Office of Vocational Rehabilitation gives them and move along.

Amending the Civil Rights Act failed; it failed a couple of times. I’m not quite sure why because I wasn’t in Washington then, although now that I’ve been here for seven years I could take a whole lot of guesses. But nevertheless, it was an effort that began to raise the consciousness of people with disabilities to say, “Hey! I do have civil rights. I am a member of the community. I am able to contribute, and I should be able to do so accordingly.”

An event that was a watershed for me (and for the movement as a whole) was a conference — held less than a decade ago in New York City — sponsored by the JM Foundation, which is a foundation that for many years has been involved in “vocational rehabilitation.” This conference had a kind of a unique idea: let’s get other foundations involved in issues concerning people with disabilities. So, we began to put together this conference that — to use a phrase that is hackneyed at this juncture — was called Empowerment of People with Disabilities. We probably had around 15 or 20 foundations. I mention it for two reasons: 1) It was probably the first time that kind of activity was attempted, and 2) a good friend by the name of Ed Roberts was one of the presenters. Ed got up in order, as always, to shake the grantmakers up and to indicate to them that issues as they he perceived them. At this conference we realized what the problems were. Again, attitude.

Foundations were saying, “Disability stuff is very interesting, but it’s a health issue that should go to Robert Wood Johnson or Johnson & Johnson because there’s a medical response to it.” When we talked employment, they’d say, “well, we do employment, but we don’t do health issues. We don’t do disability.” And when we talked about housing, they’d say, “that’s a very interesting idea, but you’d need some accessible stuff for that, right? We don’t do that stuff; that’s the federal government. If you can get that stuff from the federal government, come back and talk to us and maybe we can work together to get some special housing.” And it went on, one after the other.

What became patently clear as late as 1987 — only a year before the bill for the Americans with Disabilities Act (ADA) was first introduced — was that grantmakers just didn’t know. They just didn’t understand that the category — if you want to call it a category — of people with disabilities is part of all the categories across the board they have for grantmaking. No matter how different these foundations were, until they began to see other foundations giving non-medical grants that included people with disabilities and to see the results of those programs, people with disabilities would be relegated to the medical model that they had been stuck in for the 25 years before.

In 1990, we established our grantmakers consortium, The Funding Partnership for People with Disabilities, and since everybody had at least heard of a “Disabilities Act,” we were able to say to funders, “Well, folks, you know, you’ve had a hundred and fifty years of giving and a fine background in doing that. Why don’t we have all those ADA proposals go to your disability expert. Could you give us the name and number?”

And they said, “Whoops.” And they’d go back home and ask who that might be. Lo and behold (what a surprise), the following day they’d give us a call and say “We’re not quite sure that we have anyone assigned in that category as of yet, but we’d sure like to work with you to put this together.”

Those times have changed, too, and I think that probably brings us up to the present. I think that the stage we’re in right now (and I certainly won’t go into an editorial about some of the scary, public things that may go on vis-a-vis legislation for people with disabilities) is one of tremendous growth in the private sector. That’s why you folks are here, and I encourage this involvement. I think that the steps we are going to take today and The Funding Partnership steps that we’re going to continue to take are important ones. They are important because I see a growth. In The Funding Partnership we had 20 foundations. We knew it was the right thing to do, and after we did it, we saw 20 foundation representatives who walked away saying, “That’s not only a valid part of all of our categories, it’s an issue that we have to involve ourselves with.”

In the second round of The Funding Partnership, we had over 30 foundations, and we presented at the Council on Foundations’ national conference and produced a video to get them involved. That has begun to create a dialogue that is continuing today.

“What do people with disabilities want?” is one of the generic questions I was supposed to sit up here and answer. I sure wish that I could answer that in a one-to-ten and then go out and do at least eight or nine of them, but I can’t. I can say one generic thing about it. Folks with disabilities will be closer to what they want if foundations include them in their categories, if foundations don’t exclude them by saying things like, “We cover categories that you’re simply not a part of.” Because that’s simply not true. And they will be closer to what they want if foundations work together, even with limited resources, to make sure that those resources get to that small Seattle program that does job placement, or to that Florida research project that does computer technology in employment, or that program that makes sure that folks with severe disabilities get out of the workshop and into the mainstream — which is a terrible word, but I can’t think of a better one.

I think folks with disabilities want to be a part of it. They want to be a part of it in just about every category and have their programs evaluated — if you will — like other programs that reach their goals.

There’s big talk now about outcomes. I think this is hilarious because it really says something about where we’ve been. There’s a new idea now, which is called “outcomes.” Like you get a program and it does what it’s supposed to do. Can you imagine that? This is a new idea in disability, and I think it is tremendous. For years — I guess — we had programs with no outcomes, or if they had outcomes, they had nothing to do with what they wanted them to be. I haven’t figured that out yet, but now we have a movement toward outcomes, which I think is fine. I think it’s important because it says something. That may sound silly, but it really says something kind of important. We’re looking at this on the merits now. This is not “show and tell” anymore. This is not the time when we create a program and we pat people on the back and tell them, “You’ve done a tremendous job of whatever you’ve done for these folks.” This is a time when — lo and behold — we’re subject to, and under the same kinds of realities as, everybody else. Somebody brilliant has come up with the idea that we can measure the outcomes.

It’s important for foundations and for all of us to know as we enter into these programs that we evaluate them on the merits. We evaluate them on the merits to find out if they, in fact, do serve the folks they said they would serve, if they do reach the outcomes that they said they would, and if they do meet a need that in the larger picture is going to really mean progress. Doing job placement for 400 people into entry level jobs, when 325 of them are folks that could be in middle management jobs, is no longer an acceptable outcome.

I think we’re growing. I think the state of the art is growing. I applaud it. I think that during today’s conversation, we should seek to adhere to the highest standards of service so we can replicate programs and support them with our resources and come up with a strong feeling that we’re going in the right direction.

I do think that it is important to impress upon all of us that we are in a state of very rapid change and that the role that foundations will play — in the disability movement and in support of programs for people with disabilities — is not only going to become more integral, but probably also crucial over the next few years. [return to end of Hearne summary]

The Changes in Demography Requiring Changes in Views on Disability

Kate Seelman, Director
National Institute on Disability and Rehabilitation Research
Office of Special Education and Rehabilitative Services
U.S. Department of Education

The National Institute on Disability and Rehabilitation Research (NIDRR) is in an interesting position because we identify ourselves and understand our research in terms of domain. We look at the whole person, the whole person in society. Parts of that view include medical, community integration, technology and other issues. NIDRR is, perhaps, a really appropriate research institute for all of us.

Many of you knew Irving Kenneth Zola, who was a professor and sociologist at Brandeis University and, perhaps, one of our most brilliant thinkers. Despite his passing away last year, Irv continues to inspire us all. He argued that an exclusively special-needs approach is a short-term approach. What we really need are more universal policies that recognize the entire population is at risk. Without such a perspective, we will further perpetuate a segregated, separate and unequal society, a society inappropriate to a larger and older changing-needs population.

“The basis for this,” Dr. Zola argued, “is twofold. First, the problems of disability are not confined to a small, fixed number of people. Second, the issues facing a person with a disability are not essentially medical — not simply the result of a physical or mental impairment, but the fit of the disability with the environment.” And that’s the social, the attitudinal, the architectural, the communication and the political, obviously.

This kind of perspective will accommodate many of the trends that many of us see in American society today — the aging of the population, the increase of poverty (especially among the non-elderly and children), indications of increased violence and abuse and weakening of the social structure in terms of family and community. All of these, clearly, impact on disability. As Paul and many others have said, disability policy in the last 20 to 30 years has produced an extraordinary group of laws that address the needs of people with disabilities. Ironically, I think, they also address the needs of the larger population.

Many of the laws involve “normalization,” to use Dr. Zola’s term. The Individuals with Disabilities Education Act (IDEA) emphasizes mainstreaming. The Developmental Disabilities Act (DDA) emphasizes deinstitutionalization and moving toward supported communities. The Assistive Technology Act (Tech Act) emphasizes technological supports in society. The Decoder Circuitry Act requires the installation of a computer chip into mass manufactured television sets so that people who are deaf can ride the mainstream because the costs are much lower in mass manufacturing than in special, or “orphan,” technology manufacturing. Extrapolating on the mass manufacturing concept is the principle of “universal design,” which means designing one’s society so it is accessible to everyone or to the broadest range of abilities. I think that’s one of the reasons we are all here. The underlying values and commitments — and these include equal opportunity and community integration — are universal for children, adults and the elderly; and for people of diverse ethnicity and different income levels.

Regarding normalization, NIDRR has been looking at something we call the “emerging universe of disability.” These are essentially trends, and I think they support what we’re talking about in terms of normalization. These trends were created by changes in society, economics, medicine and biology. The emerging causes and patterns include violence and abuse, sexually transmitted diseases, injuries, aging and stress.

We are especially concerned — the Centers for Disease Control, for example — about the increase of low-birthweight babies, more pregnant adolescents, problems with malnutrition and the impacts of toxic exposure within the environment. Violence and abuse are closely related to disability. People are required to live with the results of violence and abuse. Sometimes we think of them as just statistics of mortality; however, if you visit NIDRR‘s model spinal cord injury centers, you see rows and rows of young Latino males, 14 to 21 years old, who have paraplegia.

Who are the victims? There are extraordinary contrasts: African Americans and Latinos show up in numbers far larger than their percentage of the population. Again, there are similar, startling contrasts in regard to race. We are becoming more and more conscious of — and alarmed at — the rise in the numbers of child-abuse and neglect incidents. It is also important to note that children with disabilities are much more likely to be maltreated. Types of maltreatment include physical abuse, sexual abuse, emotional abuse, educational neglect and emotional neglect. Whereas 22.6 percent of all children suffer from these, 45.5 percent of kids with disabilities are affected. Maltreatment is highly suspect in causing disabilities.

Women are victims of maltreatment at increasing levels. (Three million to four million are assaulted in their homes; 3 million to 4 million remain in abusive relationships; 17 percent use emergency medical services.) We do not know how many became disabled from maltreatment. However, within the disability community now, women are beginning to organize and communicate. As reported by women with disabilities, 40 percent of them have experienced sexual abuse, 12 percent have been raped — and remember, the reporting rate of rape is always very low compared to the probable actual events.

There are 1.7 million of the elderly who are victims of abuse. Kids with acquired immune deficiency syndrome (AIDS) are becoming a significant problem. In 1993 there were 5,000 recorded cases of pediatric AIDS, and minority children account for 77 percent of the cases. People with AIDS are living longer (10 or 11 years), and, thus, move into the world of the disabled. Substance abuse is having serious impacts on children. Prenatal drug exposure obviously affects social development: cognitive, language and emotional development and regulation. There are multiple risks to low-birthweight babies, such as cerebral palsy, mental retardation, hearing loss and vision impairment. Also, teenage mothers are more likely to have low-birthweight babies than are older women.

Exposures in the environment to toxic substances from a myriad of sources is still a mystery to all of us, but exposure to the element lead has been documented to cause numerous deleterious effects on the central nervous system. Of course, there are other factors within the environmental illness rubric: drugs, industrial chemicals and so on. These are all emerging problems that we see coming more and more into clear and alarming focus. There are 4,000 to 8,000 cases of fetal alcohol syndrome a year; the syndrome has been around for a long, long time.

NIDRR has some trouble with the quantity and quality of data sets for minorities with disabilities, and we may put together a research and training center around that issue. There are other areas that may deserve such attention as well: violence, women and disabilities, and adolescent pregnancies.

Collecting and working with this type of data brings us back to the need for universal policies, to go back to Dr. Zola, and the fact that the disability population is a changing needs population. [return to end of Seelman summary]

The Powers, the Players and the Possibilities

Marca Bristo, Chairperson
National Council on Disability

I am one of the people here who spends most of my time out in the real world — outside the beltway. I come into Washington as a visitor and try to bridge the two worlds inside and outside the beltway. What I’m going to try to do is speak from that perspective — to bring the issues we’ve been talking about to the level where people live so that perhaps this afternoon you can return the discussion to a level where you in your own locale and this group collectively can have an impact on the real lives of Americans with disabilities.

Something that really struck me hard here this morning was Paul Hearne’s comment about the event in May of 1977, when people with disabilities mobilized around the Section 504 regulations. The comment made me really inwardly reflective because 26 days after that civil disobedience event, I broke my neck in a diving accident. At the time of that sit-in, I was not a member of this club. I was on the other side of the line. Thirteen years later, in July of 1990, I was frantically trying to make plans to come to the White House celebration of the signing of the ADA. I had failed to factor-in my fatigue, as I had just given birth to my second child, Madelene, 10 days before. The linkage between my 1977 event and the ADA signing in 1990 is the contrast of positions in my mind. In 1977, I could not imagine having a baby. I did not think life had that in store for me. Then, my life changed. I joined the club.

My life went on a course where I had two — not one, but two — babies. In 1990, my children were a precious and valued part of my life as I prepared to join my colleagues in the ADA struggle as we celebrated many, many years of hard work to get this monumental civil rights legislation passed and signed into law. My reflections focus on what had changed between ’77 and ’90. I had changed. I had changed the way I looked at myself. I met in the course of those 13 years all the people you’ve heard about today. Irv Zola was a phenomenal storyteller, who talked about living life with a disability. Ed Roberts, more than almost anyone else, impacted my life so that I believed I could challenge the status quo and make a difference.

Me. One individual person could do this.

Yesterday, I was at a town meeting held by the National Council on Disability in Washington, D.C., about how the ADA, five years after passage, is affecting people. We have completed 49 out of our 50 state visits where we listened to people. I can tell you confidently that people are different than they were five years ago. For the first time, the consumer community feels like it is in its rightful place in society. The changes we heard about were at a basic, simple, life-living level. Visiting friends is now possible because there is an accessible bus. Playing at a playground is possible because there is an accessible one. There are still lots and lots of things to be done, but we cannot forget the successes we have forged.

On Memorial Day weekend in 1977, my life changed. In 1994, on that holiday weekend, Christopher Reeve, the actor, fell off a horse. I can confidently assure you that Superman had no idea that he was going to join this club. Not one. Not for him. Yet, he did. And I want to reach out to him and say something like, “You think that your life is over, but it isn’t. You can believe differently about that — even at a C2 level (damage located at the second cervical level — usually indicates a respirator-dependent, quadriplegic condition).

A large and not-so-invisible attitude problem that my almost 20 years of club membership has made me sensitive to has become a serious barrier to continued progress in the disability rights movement. This attitude problem exists mostly in the club members, not in the temporarily-able-bodied population. The best way to describe it is classical “we/they” or “us/them” conflicts. It is counterproductive not to see that we are all one — everybody. Disability is going to happen to most of us — or at least to someone in our families. It is a normal part of life. To me this is the biggest lesson taught by the ADA. In a very personal and real way, what you all can do to affect the lives of your community is dramatic. For example, you can make a simple change in policy requiring and ensuring that your capital grants include an “accessibility” clause.

Over the course of the years we are looking at, I believe that not only did I change the way I viewed myself, but also that people are gradually beginning to change the way they see us. The change has been gradual; the changes still needed are many. It is the biggest single problem for people with disabilities. I deeply believe that people with disabilities must be included at the table: the board room table, the office conference table, the individual workstation table and all other tables where decisions are made. Their presence at the table must be in a fully empowered partnership role. Without that empowered position, others around the table will not change their viewpoint about people with disabilities.

In 1986, the National Council on Disability wrote a little book titled Towards Independence, which is sort of the Bible of the disability rights community’s policy agenda. After reviewing it recently, I thought it remarkable to see the recommendations that came out of there 10 years ago, and it is pleasing to see that almost all of them have been implemented to some degree. And yet we have today — for willing and interested people with disabilities — an unemployment rate of 70 percent. The rate is higher if you are black or female.

This rate has been almost constant for about 20 years. Such a depressing fact can make people feel very discouraged and wonder what we have done wrong. We can’t fall into that trap. What we have done right has only begun to take hold. And there are bigger challenges that we have to take on now. The biggest challenge is: will we let our new value system of empowerment, of independence, of economic self-sufficiency guide us? Or will the vested interests, the power of politics and the economic and political context in which we work right now pull us back into the old dependency or income-maintenance models?

This is a period of radical change. As I have said to consumers all around the country, change — in and of itself — is not good or bad. It has within it both the seeds of our future and the seeds of our destruction. What we need to do is leverage change towards the goals we have for ourselves and build some momentum around it. On the other hand, the context in which we are functioning these days is different than ten years ago. Part of the price we pay for taking a seat at the table is that some of the paternalism starts to go away and we then have to take responsibility and respect ourselves. Now that’s good. It means that issues of disability will start to be looked at not as issues of disability but as pieces of issues like poverty — parts of bigger issues that cause us to join hands with people such as in the area of housing policy in this country — not simply from a disability perspective but from that of the people who are housed there and are also tremendously poor. There are opportunities for great alliances in such issues.

I must not leave here without saying something about our current context. Much like other civil rights movements, we are at a point where some of our victories have resulted in a backlash. We should not be surprised. Any cultural-change movement stimulates this kind of reaction. We need to be wise, though, and understand it when we see it. We need to understand that the backlash helps fuel myths in the press about the ADA, for example. Myths are not born in the reality that most of us know. How many instances of bad journalism are out there about the costs of accessibility, the insanity and the lack of common sense in implementing the ADA? While, from our perspective, we believe it is a very common, sensible law as most of these policies are.

We are trying to shift our community from dependence to independence. Nothing could be more common sensible than that. A tactic employed by the purveyors of the backlash is to try to fracture us, divide us up, have us fight against each other. The tactic looks like the debate about who is disabled. If you have these genuinely disabled people and these not-so-disabled people — if you’re discriminated against on the basis of your disability without regard as to whether you’re fat, you abuse substances, or you use a wheelchair — the result is the same. You are isolated and not allowed to reach your full potential as a human being.

In the areas of focus for today — employment, education and health — we have a history of an old set of values. We have a current climate where people want to move us to a new value system. Our challenge is to do that thoughtfully, in a manner that doesn’t dismantle the basic supports that people need to survive. For example, a person is 40 years old and unemployed, having never worked before because the system defined him as unable to work. And now the safety net is being pulled out from under him. The question is, how do we take that person, and how do we plan for the whole next generation of people for whom our strategy might be a little bit different? In most every area of public policy, we have outdated values. One of the best examples is in the area of employment. The assumption that people with disabilities are unable to work has guided most of the programs. We have a Social Security system that rewards us for staying on it. When we try to leave it, we can’t. We can’t find health-insurance coverage. If we leave the SSA rolls, we lose access to Medicare and Medicaid. We have tremendous obstacles of that sort that we need to shift away from and move towards supporting an independence-oriented life style.

Our challenge is to help you attendees learn to think during your grantmaking process about what is the difference between an empowerment-oriented proposal and one that supports the status quo. We do not want the status quo anymore. You get proposals from “sheltered workshops.” There is a new trend in employment, even for the most severely disabled individuals, that should cause you to say, “Maybe this foundation really doesn’t want its dollars spent on such a program.” I really believe that the greatest investment of your foundation dollars is to spend them in whatever local efforts can support the individual growth of that community, whether it’s through community organizing, advocacy, peer support or policy research. Remember that in most settings we are not defined as a community and, therefore, we cannot tap into your community organizing dollars. These things can help us take control of our own lives. Be wary because as federal dollars are cut, you will be asked to support these status quo, dependency programs.

I want to close on one thought. There are many outdated values, such as “out of sight out of mind”; infantilism and paternalism; the pity one (there but for the grace of God go I); the deficit model, which looks at what’s “wrong” with us instead of what’s right; and the “super crip” (pull yourself up by your boot straps) who never, ever needs anything. All of these old values need to be replaced with an empowerment-oriented, civil rights, self-help model. That is what people with disabilities say they want.

There is a terrifying phrase creeping in these days in this climate of backlash and period of economic uncertainty. It goes like this: we are worrying more about what people cost than what they’re worth. The most terrifying and clear presentation of that attitude is in the Kevorkian-like public policy decisions that are just around the corner.

Last year when health care reform was being debated, there was no community that stood to benefit more than the disability community. We are categorically cut out of health care benefits in most communities unless we stay on the public dole. This is due to “pre-existing condition” clauses and overt refusal to sell coverage. The current trends toward “managed competition” are based upon a model of normal that doesn’t recognize most of our needs.

When we fought health care reform battles, I really think that none of us fully anticipated where we might be today. People were out there saying we don’t have a crisis; therefore, we don’t need reform. Those people paid careful heed to what all the opinion polls were saying and launched the most expensive and savage lobbying attack against the reform. They won. People with disabilities lost. The status-quo people convinced the American people that there was no crisis. Of course Congress supported what the American people wanted.

But guess what? Now we see major disaster ahead for Medicare and Medicaid. And contrary to public belief, all Medicare does not go to “poor welfare people.” Much goes to disabled people’s health care, and what this means to our community is not Cadillac service: it’s life and death. If you don’t have access to your health care and you have a higher-than-average need for it, what do you do? What the disability community wants to see is community-based supports. What we are often forced into institutional living — and now, even that is in jeopardy. Where will we go?

And this brings me back full-circle to the issue of public attitudes. Even though we’re making change, we know that in people’s hearts and minds we are not quite as equal — and therefore not quite as valuable, and therefore not quite as deserving.

I speak passionately about this because I feel passionately about this, and so do the thousands of people around the country we met on the National Council on Disability’s state tour. These are very critical issues to us. They are not academic issues. They are matters of life and death. I hope that you will take the challenge seriously. [return to end of Bristo summary]

Policies in Focus: Education

Judith Heumann, Assistant Secretary
Office of Special Education and Rehabilitative Services
U.S. Department of Education

I see my job as focused on looking for ways by which we can integrate issues affecting children and adults with disabilities into a broader public policy agenda, although I — like the other government people here today — came representing an agency that has responsibility for working in the area of disability. It seems to me that in order for us to be sure that we are really going to be able to advance broad public policy that addresses community needs, we must be looking at who the constituencies of those communities are. As we all know, individuals with disabilities are part of the constituencies of all communities.

I’m in the Office of Special Education and Rehabilitative Services; I have responsibility over the Office of Special Education, the Rehabilitation Services Administration and the National Institute on Disability and Rehabilitation Research. We have about a $6 billion budget and a staff, right now, of about 360 people.

One of the reasons why I am thankful that this meeting is being held is to be able to have the opportunity as a government person to say basically the same things that I said when I worked in the nonprofit community. And that is that there needs to be a way to get foundations to acknowledge the fact that people with disabilities should be a part of any and all of the work you are doing. What we are not asking for are separate funds set up just to deal in the area of disability. Although, as Bobby Silverstein said this morning, certainly there are reasons to specify funding to deal with disability, a special system isn’t something that we believe, as a rule, to be a necessity.

It was incredibly frustrating for me for the many years that I worked in the nonprofit world to go to foundations and hear, “We don’t do handicapped,” or “We don’t do disability.” Let me give you an example. While I was at the Center for Independent Living in Berkeley, California, we ran a program that specifically dealt with minority, unemployed, disabled youth. It was a successful, federally funded program working with families and very-significantly-at-risk kids and schools. When President Reagan was elected, as we all know, the program dollars were drastically cut. So we were looking for foundations that did work specifically with minority youth. I had one well known foundation say to me, “We don’t do handicapped. We did that. We don’t do it anymore.” I patiently tried to explain that I wasn’t asking them to “do handicapped.” I was asking them to please look at the criteria that their program covered, which was unemployed minority youth. I wanted them to see how our program fit exactly and perfectly into their category, but they were unwilling to talk further. This example can be replicated over and over again in the nonprofit disability world.

There are a couple of things that I want to say. One is that data are relevant and valuable, but should not be used as an excuse for not providing funds for programs. I think there is an incredible amount of data out there. If you want data from us, we will give you more data than you have room for in your offices.

The second is this: what are the barriers existing in your foundation that prevent you from looking at disability-related issues in the areas that you are funding? If we can have some meaningful discussions about what those barriers are, then maybe we could help to address them.

I took this job working for Secretary Richard Riley in the U.S. Department of Education for two reasons. First, I wanted to affect policy in the area of disability. Second, I wanted to integrate disability-related issues into a broader agenda. I was only willing to work in an administration that was willing to allow disability-related issues to be brought into those bigger agendas.

The Office of Special Education and Rehabilitative Services (OSERS) is a microcosm of the world. A major part of our job is to implement the special education legislation (IDEA) and the rehabilitation legislation (Rehab Act), and we are also, on a daily basis, trying to get our issues integrated into the broader reform efforts going on in the area of education and employment. Having to deal with both political appointees and civil servants — trying to get them to understand our issues — is a very educational experience. I can honestly say that there are people there who are committed to wanting to do this, but they don’t know how to do it because they think there is something different or special about the issues we are discussing.

It really is pretty simple just to say that if you’re working in the area of poverty, disabled individuals are the poorest of the poor. If you are working in the area of women’s issues, disabled women are the poorest of those poor, with racial minority women the poorest of all. If you’re working in the area of unemployment issues, yes, the same position is held by people with disabilities.

When I specifically look at the issues in the area of education, our law (IDEA) mandates that all children with disabilities have a right to a free, appropriate public education in the least restrictive environment. Basically, that means most children should be going to regular public schools in regular classrooms. We certainly have been having success over the last 20 years since the enactment of this law, but there are still too many children in segregated classrooms or schools — or who are being pulled out of regular classrooms when they shouldn’t be.

What are the causes of that? They are many. This is a way for you to look at one: if your foundation is putting money into higher education, do the schools you are funding really train teachers to work in what I call “the classroom of today,” or do they train regular teachers and special education teachers separately? Many teacher education programs are still bifurcated in their training programs. This shows in the depths of the curricula. Special teachers and regular teachers have very different and separate courses of study.

Graduates of these programs enter the professional work world unprepared to teach in the classroom of today. They, like others — shall we say, some foundations — think that a special education child needs to be taught or served by someone special who has been blessed (trained and certified) by somebody special. Otherwise they’re not qualified to teach or serve that child. It is certainly true that some children need appropriately trained personnel who are expert in particular areas (behavior, reading, communication and so on). On the whole, however, most teacher trainees should be receiving an adequate training that enables them to work with most children with disabilities in the classroom without feeling the need for a special-education teacher in the classroom. So, teacher training is one of the issues that is crucially important.

Another area to address is local community education. If your foundations are funding work in this area, questions need to be asked about where the disabled children are. If they are not in inclusive, general classroom settings, questions about why need to be asked. Learning disabilities, in all their multiple forms, are present in many, many students in today’s schools. About 50 percent of the children covered by IDEA have learning disabilities. It is believed that if a general classroom teacher is appropriately trained to teach reading skills and does so, a substantial number of children that have legitimate learning disabilities would not wind up in a special-education program.

Teachers are not appropriately trained to identify reading and other related problems. Therefore, by the time these children’s problems have been identified, they have become exacerbated. At this point, they are eligible for placement in special education. But then, we are dealing with a population of children who are already demoralized and have a low sense of self-esteem. Unfortunately, it is impossible once they have reached the third or fourth grade to help them catch up to the appropriate grade level. When you look at some of the outcome data on school dropout rates, we see that about 38 percent of students who are covered under IDEA are dropping out of school before high school graduation.

Moreover, a substantial number of those students who are learning disabled are defined as “emotionally disturbed.” As is well known, the media has paid a great deal of attention to disruptive children in the schools. There is a heated debate going on about who is responsible for dealing with these children. I have been deeply involved in this debate. There is an incredible controversy going on as to whether so-called “disruptive” children, or “violent” children should be expelled from school and thereby no longer be the responsibility of the educational system. As you probably know, this is a very “hot” issue, not just for disabled children but for all children. It is a big public policy debate about who has responsibility, if anyone does, for the problem of children who do not conform to the traditional behavior expected by the schools. It is our belief, as supported by the data, that in schools where teachers are being appropriately trained, and where teachers are being taught appropriate management techniques, results indicate that children with emotional problems do not deteriorate to new levels that many other children are experiencing because of poorly trained personnel.

Many of these people with disabilities are not noticeable. For example, about 73 percent of the children who are covered under IDEA have invisible disabilities. They have learning disabilities and emotional disabilities. Children who are deaf, blind or deaf-blind make up only a small percentage of the total number of children with disabilities. They account for only 1 or 2 percent of the population. Children with physical disabilities account for a higher percentage. Nevertheless, the bulk of children with disabilities are invisible, and this continues to be the case as you look at the adult population. People with cancer, heart disease or mental illness are an invisible population with disabilities. The latter are people who are often ashamed of even identifying themselves as people with disabilities.

In the big picture, looking at education for children with disabilities requires us to use the same vision we used when we looked at education for minority children. They are the same issues. We are talking about dismantling a separate system of education that has in many cases been accepted because children with disabilities were perceived to be incapable of learning like nondisabled children. Prior to Brown vs. Board of Education (1954), it was acceptable to believe that “separate but equal” was truly equal. Some principals, teachers, superintendents, school boards and sometimes parents still need to be enlightened to the fact that children with disabilities do have a right to receive a free, appropriate public education in the least restrictive environment.

Something we in OSERS have been seeing much too frequently is both an over-identification and an under-identification of urban, minority children as in need of special education. Thus, children who may not actually even have learning disabilities are removed from inclusive, general classrooms and placed in segregated settings. OSERS executes a monitoring system where a state is visited every four years for monitoring the level of its implementation of IDEA. If we find problems, we create a corrective action plan and negotiate with the state with the intent of getting it to improve its implementation of the law.

Many foundations around the United States are really looking at urban, inner city issues, but the issues of the child who has a disability are not within their view. It is critically important that the private sector, including the philanthropic community, bring these children and their lot into view.

I see foundations playing a different role because you come from the community. You are part of the community and frequently have influential community leaders on your board of directors. If those people become educated and committed, they can effect change. Use OSERS to educate your foundation staff about the data or about effective models. We’ll be very glad to sit down and talk with you to help look at the particulars that your foundation may need additional information about. In most cases we can certainly get you that information. We spend many millions of dollars on programs around the country that are looking at everything from school finance to inclusion to training.

In all the areas we are discussing today, over and over again we face the same problem: the requirement to convince organizations and persons that people with disabilities are capable of doing a great variety of things. These are the same types of experiences that happened in the arenas of racial justice and gender equity. To us it is really important to make sure that individuals with disabilities are involved on your staffs and your boards of directors. One of the reasons women’s issues have moved closer to the forefront is that women have moved into positions of authority. If women were not in positions of authority in the corporate world and in many foundations, we would not have seen the same gains for women as we have in the past two decades.

I want to close with a final word about a major problem relating specifically to employment. Many employers abandon people disabled by work injuries. Because of lack of information and training, companies have limited knowledge about both injury-prevention and return-to-work rehabilitation best practices. If foundations can involve themselves in any way to influence this problem, some truly beneficial activities and results could ensue. [return to end of Heumann summary]

Policies in Focus: Welfare

Robert Williams, Commissioner
Administration on Developmental Disabilities
Administration of Children and Families
U.S. Department of Health and Human Services

I appreciate both being here this afternoon and the leadership efforts of Paul Hearne, Jeanne Argoff, Lauren Cook and others who have made this forum a reality. It should be clear to each of us here that the forum itself could not have come at a more critical time. It seems especially timely and crucial that those of us in government and from the foundation world sit down and strategically sort through the challenges confronting our nation in respect to disability policy.

I certainly do not have to tell you these next few years will be turbulent ones, vying for and redefining both the body politic and the soul of America. And this will be particularly true with regard to Americans with developmental and other disabilities and their families, as well as for the programs we oversee at the Administration on Developmental Disabilities (ADD) and elsewhere in the government.

Just as there are significant risks, there are equally critical opportunities as well. For if there is one thing that the Executive Branch, the Congress and vast numbers of the American people agree on, it is that we must be about doing a great many things differently throughout the federal government. Our collective task, therefore, is to keep focused by taking advantage of and maximizing opportunities to do things better than before.

This is the driving force behind President Clinton’s strong desire to forge a new covenant with the American people — a new covenant that recognizes the right and responsibility of all Americans to live up their fullest potential and to contribute to the well being and future of our nation.

Not surprisingly, those of us with disabilities, our families and allies are in the vanguard of those who have long called for a new covenant with government at all levels. We expect government to be a positive force in our lives. We want our government not to take care of us, not to make those decisions and choices we are better able to make for ourselves, or even to necessarily delegate or devolve that decision-making down to just another state or local bureaucracy. This would solve nothing and might even compound the needless dependency and economic disenfranchisement of millions of Americans with disabilities and our families.

Hence, what we really expect of government is that it works with us to create and take advantage of the opportunities and supports to lead fully inclusive, contributing lives in our families and as truly participatory members of the American community writ large.

This is the basic thrust behind both President Clinton’s new covenant and the administration’s ongoing efforts around welfare reform. I want to focus most of my comments to you today on disability policy issues surrounding welfare reform. As we all know, welfare reform is one of the hottest topics of conversation, not just in Washington, but sweeping the nation.

Despite what you might think of the rhetoric or the tenor of the debate, everyone seems to be immersed in it: the Administration, the Congress, certainly the states and even wide cross sections of the American public. What is frightening to me, however, is that there is just a relative handful of individuals working at this huge nationwide venture with a clear disability policy perspective in mind. This is understandable given what is already on the disability community’s overflowing policy plates. Threats to the ADA, the educational rights of children with disabilities, Medicaid and the childhood SSI program — to name just a few — must and will take precedence during these times.

However, it is likewise incumbent on those of us in government and foundations to give needed focus and direction to the welfare-reform policy debates as well. For absent creative, thoughtful leadership in these key areas, welfare reform will become a series of empty promises for millions of Americans with disabilities of all ages nationwide.

We need to be at the table both in Washington and in the States whenever welfare reform is discussed for three critical reasons above all else:

1. 19.1 percent of women on AFDC have disabilities. A disproportionate number of these women have learning disabilities or mental retardation, too.
2. 8.4 percent of all women on AFDC have one or more children with disabilities. Moreover, about a quarter of women with disabilities on public assistance have children with disabilities of their own; and
3. 3.7 percent of all such women have other individuals with disabilities living with them and often rely on them to meet their personal assistance needs.

Frankly, I believe those who stand to either win or lose the most are young women with learning disabilities or mild-to-moderate mental retardation, as well as young mothers of children with disabilities. The way that most welfare reform proposals and approaches are playing out in this regard is that they exempt all these individuals from training and work requirements. This is, in my view, extremely simplistic and regressive social policy. The message it sends is that if you have a disability or are the parent of a child with a disability, you are worthy to be poor.

As a nation we can do far better. Specifically with regard to young children and their families, welfare reform offers opportunities for the federal government and foundations alike to work with states and others to develop and pilot exemplary approaches designed to:

1. provide women with disabilities on AFDC, as well as other single parents of children with disabilities, cost effective job and child-care accommodations to enable them to take full advantage of welfare reform’s back-to-work provisions;
2. increase the capacity of Head Start programs to serve children with significant disabilities;
3. increase the availability of affordable, accessible, high quality and inclusive child care for all children with and without disabilities; and
4. promote seamless service provision between Head Start child-care programs, maternal- and child-health programs, preschool and education and other services for children with disabilities and those at risk of developing significant disabilities.

To begin to develop and refine best practices in these crucial areas, the Administration on Developmental Disabilities (ADD) is proposing to fund one or more projects of national significance. Such projects will be aimed at demonstrating how best to provide early-child-development and family-support services through coordination between the child-care and disability communities. We are especially interested in funding innovative approaches meeting the needs of children and families in poverty. It goes without saying that we would welcome your support of these or similar initiatives.

Throughout much of the last year, we also have been working extremely closely with the newly reorganized Child Care Bureau in the Administration on Children and Families (ACF). Its principle leadership, Joan Lombardi and her staff, are strongly committed to fostering access to inclusive child care, even in the face of incredible attacks on the basic integrity and future of their programs. On June 27, the bureau will sponsor what we believe is the first child care leadership forum to identify best and promising practices leading to early and inclusive learning opportunities for all children. I would be pleased to provide further information to those interested in this afterwards.

The disability community needs to lend its unique and often transformational perspective to the welfare reform debate for another reason as well. That is to let the country know that welfare reform need not be punitive. We can use efforts to train and support unemployed and underemployed Americans to achieve critical national aims. This is certainly true with respect to disability policy, and it is why ADD, together with the ACF, is undertaking a joint research and demonstration project to measure the efficacy of training and placing AFDC recipients under a JOBS program to serve as personal assistants and other related paraprofessionals.

Low-income Americans have always provided massive amounts of personal assistance to people with disabilities of all ages. Typically, however, this has been done in ways that penalize poor people and those with disabilities alike. Moreover, disability, welfare and community development agencies have had few incentives to work together to produce truly win-win results for both communities.

We are convinced that there is a better way, and that this way begins by working with young Americans, both those with and those without disabilities — especially those who are left out and left behind and those who are at the very margins of the American community. It begins with preparing an increasing number of these young men and women to come together to essentially support each other through a national personal-support infrastructure. It would offer individuals with significant disabilities of any age and background ready access to the same kind of ongoing personal assistance and assistive technology that many of us in this Administration now take full advantage of ourselves.

It is our hope, therefore, that through this project we can begin to play a critical role in bringing the two communities together to work collaboratively on piloting such innovative approaches. One of the last conversations I had with Ed Roberts before his death was about this project and similar shared interests in reaching out to empowerment zones and enterprise communities to help them spur and support their own small businesses and become involved in providing such services as personal assistance, ADA barrier-removal and the like.

Paul and others of you who knew Ed well know he was hugely passionate. He had many loves in his life. Among the last was his keen interest in developing a range of micro-enterprise opportunities that would benefit lower income Americans and Americans with disabilities alike.

What he said to me that day was not surprising; the way he said it was. First, with his broad smile and then with an uncharacteristic seriousness, he looked at me and said, “Bob, you have finally stumbled onto something that matters. Go do it.”

At a time when federal and state funding is increasingly limited, we must not only target our monies to people and families most in need, but seek out win-win opportunities as well. Ed understood this. He saw the power and possibilities such win-win opportunities could have in the lives and futures of two groups of extremely marginalized Americans: poor people who need decent and meaningful jobs and people with disabilities who need consumer-driven, personal assistance services to live life to its fullest and to be as productive as possible.

This is an area where the combined leadership of the public sector and foundation world is particularly crucial. [return to end of Williams summary]

Policies in Focus: Health and Employment

Susan M. Daniels, Associate Commissioner for Disability
Social Security Administration

Social Security is not something that generally gets people hopping in their seats and gets them terribly interested. I hope, however, to make a case today that the Social Security disability programs are something you ought to be interested in. I want to start out by doing just a little bit of “Social Security 101” — a quick tour of the two programs we administer.

The first program we administer is one you already know because it directly affects you. Recall that little bit of “FICA” that gets pulled out of your check each payday? Some of us think it’s little; some of us think it’s large, but whatever it is, it gets withheld. You may think of that as retirement: “that’s going to my retirement,” or “that’s funding for my retirement in the future.” Well, that’s true. That little bit of FICA is funding for your retirement, but it is also funding two other insurance policies you have as part of the Social Security system.

One policy is for your survivors; it is like a life insurance policy. If you die and are therefore unable to provide economically for your family, your survivors (your minor children, disabled children and spouse) receive an income that is called “Survivor’s Insurance.” After working for a very few number of calendar quarters, you are covered for survivor’s insurance. The retirement benefit, Survivor’s Insurance, is a very important, bedrock part of the Social Security program. But, since each of us will be dead if that policy is ever drawn on, we don’t have a great deal of vested, personal interest in its affect on us.

Of more clearly a “living” interest to us is the second policy that you have as a result of your FICA tax being withheld: a long-term disability insurance policy. How many of you have a commercial or private-company long-term disability insurance policy? One, two, three, four, almost half. For those of you who didn’t raise your hand, you do have a long-term disability policy. If you didn’t know that, you do now, and the policy works like this. If you become a person with a disability at any time in your work years, and if that renders you unable to work, you qualify to receive your retirement right then. What you receive as an insurance benefit is what you would receive if retired at age 65. Everyone here who has a job has a Survivor’s Insurance and a Disability Insurance policy with a combined lifetime cash value of $300,000.

So, in the Office of Disability, one of the programs we administer is the Social Security Disability Insurance program. Succinctly, that covers people who have paid into the Social Security system who, during their work years, become disabled and retire early because of that disability. Those people receive a benefit, a monthly income. I’m going to come back to that group; so, let’s put them aside for now. (That is the SSDI group for those of you interested in acronym-ese). Some of us here have been beneficiaries on one or both parts of that program. I became a beneficiary of the Survivor’s Insurance program when my father died because of my disability.

The second program that the Office of Disability administers is one that is not a Social Security program — that means it is not being paid for by the FICA tax withheld from your paycheck. This is a program that is funded by the general revenue fund. You heard us refer to it this morning. It is the Supplemental Security Income program, the SSI program. Now, SSI uses the same definition of disability as the SSDI program. “You have a disability; because of that disability you cannot work.” (As an aside, a conversation about that definition at another time would be a very interesting one.) SSI program participants receive a monthly cash payment of about $458, and in 32 states, I think, they receive additional funds called the “state supplement.” This program was started in 1972 as a result of a consolidation of state welfare programs. At that time, the federal government took over running the “aid to the blind and disabled” program.

These two programs both give out cash to individuals who are retired from the work force and, in the SSI program, some children (about a million under the age of 22). They use the same definition of disability, the same way to get into the system — but they are funded differently and the level of benefits is different. In addition, each program has a health program. Persons on SSDI, just like the retired elderly, receive Medicare. People on SSI, like others on welfare or means-tested programs, are eligible for Medicaid: two different income-maintenance programs, each with a different health care program.

Let’s talk about why you should be interested in these cash programs. The name of this presentation is, “If You Think the System is Working, Ask Someone Who Isn’t.” Who are these people who aren’t working? I think it is very, very important to know who they are, so let’s talk about them. Please understand that statistically we know a lot about people with disabilities. There are some areas where we don’t know a lot, but in the area of employment and disability, we have pretty good data. Here are some relevant statistics from five or six basic groups of statistics that are illustrative of what’s going on: there are between 14 million and 17 million people of working age who have an impairment that interferes with work in some way; this may be a minor or major impairment. We call these “people with work disabilities.”

Of this number, about 10 million (around 65 percent) are not in the labor force. If you go out and talk with disability number-crunchers, you’re going to hear figures ranging from 55 percent to 70 percent referring to people of working age with disabilities who are unemployed. The exact digits don’t make any difference; it’s way too much. It’s not too much by a little bit; it’s too much by a gargantuan amount. We really never ague about whether it’s 55 [percent], 72 [percent] or what. It is a huge number of people of working age who are not in the mainstream economy.

Is the situation getting any better? No, it’s not getting any better. One small indicator: in 1986, Lou Harris conducted a poll. In this poll, he asked people with disabilities whether or not they were employed. About 66 percent said they were not employed. In a repeat of the poll in 1994, about 68 percent said they were not employed. So we haven’t made any real improvement. If we use long-range or historical statistics, the best time for work among people with disabilities was the early 1970s. Since then the direction of overall labor force participation by people with disabilities has been downward.

What does this have to do with poverty? If you don’t work, your chances of being in poverty are astronomical. If 55 to 72 percent of people with disabilities are unemployed, chances are they are living in poverty. Even if a person with a disability is working (and there are some), that person’s chances of being in poverty are four times as great as a nondisabled person. The effect of work is not as lifting for people with disabilities as it is for nondisabled people. Even though we make good workers and some of us make good money, it still doesn’t lift us out.

There are many, many young people in the Social Security disability programs. Individuals under the age of 30 have increased by 43 percent in the last five years. It used to be that the Social Security disability programs were retirement programs. They are now income replacement programs and getting larger and larger for younger and younger people.

This is where you get the true picture, and this is the reason why people are interested in SSDI and SSI. The following pie chart represents, in very gross terms, the total federal expenditure of about $160 billion dollars a year. Where is that money going? It’s going to one of those two programs: the cash supports for people with disabilities ($69 billion) or the associated medical care (Medicare or Medicaid) that goes to them ($45.3 billion). Of the whole pie, most of it goes to programs for people who, if they went to work, would lose their benefits (cash and medical care). These programs are “work hostile.” They don’t encourage work and they don’t support work. They only pay people when they don’t work. As you can see, we spend very little on targeted programs (training, support, rehabilitation) for people with disabilities ($2.5 billion).

Why should people be concerned about this chart? Let me put it in perspective. This chart represents current (FY 1994) expenditures. In 1984 — just 10 years ago — the number of people on the Social Security disability program rolls was about four million. The average age of a Social Security disability beneficiary was almost 50 years old. About $25 billion dollars was spent in cash benefits. Medicare and Medicaid cost about $25 billion. So it was about a $50-billion-a-year program. In 1994, 10 years later, there are more than 8 million on the rolls. That’s doubled in 10 years. The cash benefit expenditure in 1994 was $58 billion. That’s more than a billion dollars a week. Medicare and Medicaid cost about $62 billion. That’s a $120-billion-a-year total. That’s an increase that is doubling every decade.

This is the same decade when technology for people with disabilities magnificently exploded: assistive devices, communication assistance, the infrastructure of communication, mobility, architectural barrier removal. All of these grew enormously. This is the same 10 years when the effectiveness and availability of psychotropic medicines for people with mental illnesses increased dramatically — when good drugs were found that did not cause immense side effects. This is the same decade when there has been an explosion of community-based programs for people with disabilities, including those that focus on community living and supports in the community. This is the very same 10 years when disability-rights legislation was introduced, enacted by Congress, signed by the president and began to be implemented in this country.

Let’s draw a picture here: what’s going on? You see an increasing, consistent, enormous rise in statistics of people with disabilities coming onto disability benefit rolls. This costs an awful lot of money for programs that require them to stay unemployed in order to receive their benefits. In glaring contrast, there were explosions of opportunities in the community and in the work place. This contradiction keeps me up at night. If you want to ask a policy question, here it is: “What is going on here?” I don’t have an answer. But I have some hunches as to what might be behind this picture.

While it is true that there has been an explosion of opportunities for people with disabilities, two major barriers still stand in the way that keep them from achieving their goal of economic integration. I say this is important, and I’m not the only person in the disability community who believes this, but possibly I am the person who voices it very often. The only way out of poverty is through your own labor. Very few people with disabilities will win the lottery. The only way they can rise above poverty is by working. Benefit programs do not provide and never will provide anything but a marginal, subsistence existence. So for me, the highest goal for people with disabilities is for them to be part of the economic mainstream. That is where the action is for anybody in this country, and that is the only way out of poverty.

What keeps people with disabilities out of the economic mainstream? It is certainly not their lack of desire to be in it. You can gather in a room any 100 people with disabilities and ask them what they want to be when they grow up. None of them are going to say “an SSI recipient.” I have yet to have the experience where anyone has told me what they want to do with their lives is live on the margin of society, of independence, of health.

What is holding them back? I think there are policies in two immensely important arenas doing that. One of them is health care. An individual with a disability gets access to health care programs (Medicare and Medicaid) by getting on the rolls of the income maintenance programs (SSDI and SSI). This access, which is one of the chief concerns of people with disabilities, is guaranteed by unemployment. (There are two chief concerns: access and adequacy. We’ll look at adequacy in just a bit.) In this country, if you have a disability, the way you can guarantee yourself access to health care is to not work. There is no way you can get the same guarantee if you do work, unless you work for the federal government. (You can be assured that all of us will be scared to death if this administration is not re-elected because we will have to go back out in that health insurance market, which is an absolutely terrorizing experience for people with disabilities.)

The first key policy element of this problem is the conundrum-like fact that people with disabilities can be assured of health care access only if they take themselves out of the work force. This is very much the same problem a woman on AFDC will probably encounter when she faces the prospects of going to work. She will probably face the prospects of being uninsured for health care. Nobody had more to lose or to gain by health care reform than did people with disabilities. But we all have a large something to lose or gain when we look at what the enormous cost is to insure health care access by way of the income-maintenance programs, which is the way our current federal policy is structured.

The second essential policy problem that we have to face for dealing with this particular set of statistics is the fact that many people with disabilities will not be able to raise an income adequate to meet their needs regardless of what level of work and effort they put in, including their best. That’s because of two things:

• For some, it is because the income they will be able to earn will be low, either by virtue of the kind of work they can do (they will be minimum wage workers) or the amount of work that they can do. Because of their disability, they be unable to work full time or in settings where they’re likely to earn a lot of money. Individuals with some mental illnesses, for instance, can work fine for a few years and then must be out of the workforce for a year or two before being able to return to work. Such a cycle, be it either temporary or intermittent, is one reason why people with disabilities may have a limited earning ability.
• The other is that even people with good earning abilities often have extraordinary expenses that are not medical in nature and are, therefore, not covered by heath insurance. So, while they might be able to earn what for most people would be a middle-class income, their necessary expenditures drag them down into poverty.

These two policy problem areas, health care access and the ability to earn an adequate income, are bedrock issues. They are foundational problems and must be handled in order for us to stem and retard this tide of reliance on income-maintenance programs. You heard earlier this morning that there have been attacks on the income-maintenance programs. Why? Whoever attacks disability programs? That’s like attacking your mother or the flag. Who would do that? The only reason that these programs are now being noticed is because of the enormous pressure of the federal debt and the deficits adding to it. When numbers this big are seen, nobody can ignore them. They just attract too much attention. It is the size of these programs and their projected increases that are alarming.

We have now, and have had over the last five years, at least 3.5 million people each year apply for the disability programs. That is 75,000 a week. This is another keep-me-up-at-night statistic. We do not expect that figure to go down. With those projections, you can see the rise in the program costs between now and the year 2005. This is a dramatic, continued, sustained increase — something that may be a call for all of us to consider what, precisely, this country’s policy on employment of people with disabilities is all about.

At lunch, Bobby Silverstein (of the Senate Subcommittee on Disability Policy) said, “We know what the policy is because we know what the ADA says.” The ADA basically says that the problems related to employment for people with disabilities stem from pernicious, systemic, hard-core discrimination against people with disabilities. Even when we directly attack that kind of problem with civil rights legislation, we are not likely to dramatically change this tidal flow. That is, we cannot change it unless we associate with the removal of discrimination both the access to health care and the adequacy of income in such a manner that choosing to work becomes a rational decision for people with disabilities.

That’s the reason that I think you ought to be interested in the Social Security Disability Programs. Remember, being interested 10 years ago was not required because not too many people were involved. Using SSA’s actuarial projections, there will be close to 10 million people on the rolls by the end of this decade, and that is a lot of people with disabilities. Also, as we baby boomers hit the high-incidence-of-disability age-range, there will be a strong push upon the program to increase by the much larger numbers of people who want it. So, I ask you to be interested in this from a disability policy perspective, from a fiscal perspective, and from a perspective that views people with disabilities as part of the mainstream problems we have with health care and with poverty issues. [return to end of Daniels summary]