April/May 2000

The Disabled State of the Nation

By Rich Smith

A roundtable on the status of rights for people with disabilities in America from employment to health care.

The United States Constitution guarantees a wide gamut of civil rights that have been added to and amended over the past 2 centuries. Until very recently in the nation’s history, one group often had their rights denied—people with disabilities. But thanks to initiatives such as the Americans with Disabilities Act of 1990 (ADA), it is no longer possible to so contravene the liberties of such individuals—or is it?

Rehab Management invited three disability rights activists to assess the status of the freedoms enjoyed by people with disabilities.

John Kemp. Kemp is vice president for strategic development of Halftheplanet.com. Washington, DC, a New York-based Internet company (formerly known as AdaptZ.Com) that promotes relationships and enhanced information resources for people with disabilities and their families and friends. Born without arms and legs, Kemp is also a past-president of the American Association of People with Disabilities, an organization he helped launch; he continues to serve on its board.

Cyndi Jones. Jones, who is disabled by polio, is the president of Exploding Myths Inc, a media company that owns Mainstream Magazine, which she has published for 24 years. She is also director of the Center for an Accessible Society (CAS) in San Diego.

Heidi Van Arnem. Van Arnem is the founder and CEO of I-Can On Line, an Internet service offering people with disabilities a complete online community featuring data on relationships, adjusting, medical and disability information from peers, career opportunities, legislative issues, adapting the home, assistive technology, transportation, online shopping for home medical equipment, and pharmaceuticals. A quadriplegic since the age of 16 from a gunshot wound to the neck, Van Arnem established in 1992 the Heidi Van Arnem Foundation, a nonprofit organization dedicated to helping find a cure for paralysis and to raising money for injury prevention and for spinal cord research. She is a Michigan Commissioner on Disabil- ity Concerns.

THE CURRENT STATUS QUO

REHAB MANAGEMENT (RM): The rights of people with disabilities—what is their current status?

JONES: Twenty-five years ago, people with disabilities had no right to do anything. The situation today is much improved, certainly better than it was even 10 years ago, but we still have a long way to go. The mass media have not done a good job of covering disability issues. Consequently, it has taken a long time for people with disabilities to know they have rights. And when they do know, they have to be the one to enforce those rights either through the mechanism of lodging a complaint with the appropriate authorities or by filing a lawsuit.

VAN ARNEM: The ADA has been instrumental in improving the rights of people with disabilities, but most people with disabilities are not exercising those rights. People with disabilities are the largest minority in America and the poorest and the least educated. Prejudice and discrimination are still prevalent in schools, on the job, and within the community.

RM: What is being done to get more people with disabilities into the work force?

KEMP: Ten years after the Americans with Disabilities Act became law, employment rights remain a huge challenge. It is the largest one that exists beyond general civil rights for the disabled.

VAN ARNEM: Nearly three-quarters of people with severe disabilities are unemployed. There remain a great many roadblocks that prevent people with disabilities from gaining employment For example, far too often barriers against people with disabilities exist out of fear and ignorance, lack of experience interacting with people with disabilities, and not focusing on abilities. Meanwhile, the ADA has instilled fear in employers. Many think that if they do not hire someone with a disability they will get sued, and if they do hire someone with a disability it will cost an arm and leg to make the workplace accessible for them. As a result, many shy away from interviewing people with disabilities. The truth is that the expense required to make special accommodations is much lower than many employers believe. Studies by the President’s Committee on Employment of People with Disabilities Job Accommodation Network have shown that 66% of job accommodations cost between nothing and $500.

JONES: Of the employment cases filed, 94% have been decided in favor of the employer. What is wrong with this picture? The situation is no better than at the end of World War II where there was full employment for anyone who wanted a job—including people with disabilities. After the guys came home, Rosie the Riveter went home and so did all the workers with disabilities. Rosie has since gone back to work, but workers with disabilities are still at home. Things have not changed in more than 50 years.

RM: Why is that?

KEMP: Despite a full-employment economy, complaints about discrimination are continuing to come into the Equal Employment Opportunities Commission at an alarming rate. The problem is that many employers fail to recognize people with disabilities as people they desperately need. In some parts of the country, jobs are going begging. Yet, there are many people with disabilities who could easily step into those vacancies, but are not being given a chance to because those employers do not understand that such employment candidates can be made highly productive through simple accommodations and changes to the workplace.

JONES: Employers hire those they feel comfortable around. The discomfort level around people with disabilities is off the charts. Until employers feel comfortable around people with disabilities, we will never be hired.

RM: Is it possible that market forces can accomplish what the force of law thus far has not?

KEMP: You need both. You need market forces and you need law. One without the other is not enough. You need the law because it provides a framework within which the market can properly function and meet needs. Right now, we are seeing an erosion of the protections of law. For example, last year the Supreme Court issued four rulings that were harmful to the civil rights of people with disabilities. Right now, we are very nervously awaiting another one that could find the ADA unconstitutional if the justices decide that Congress overreached by enacting the ADA in the first place.

VAN ARNEM: The limited labor market has forced employee-starved companies to look at our market for qualified candidates. But there is no question that we need the law to protect our rights and encourage employment of people with disabilities. The question remains: what will happen when the economy cools and companies can afford to choose between candidates with disabilities and everyone else? The good news is during the first 3 years following the implementation of the employment provisions of the ADA, 800,000 individuals with severe disabilities entered the workforce. Additionally, the Work Incentives Improvement Act is a gigantic step forward because this allows many people with disabilities to work and still keep their benefits.

RM: What are some of the current societal, legal, and legislative challenges confronting the ADA?

VAN ARNEM: The most damaging is the latest Supreme Court case challenging the constitutionality of Title II of the ADA. The issue is whether Congress had the constitutional authority under the 14th Amendment to enact the ADA. If the Supreme Court says Congress did not have the authority, individuals may no longer be able to force states to comply with the ADA. Fred Faye of the organization Justice For All outlined the effects of a negative decision: “People who are unnecessarily institutionalized in state hospitals, nursing homes, and other state institutions may no longer have recourse under the ADA. States may no longer have to make their buildings and services accessible. State capitols, state courts, and state universities, among others, may no longer have to provide wheelchair ramps, interpreter services, or written material in accessible formats. State employers may no longer have to comply with the ADA’s mandate against employment discrimination. State employers may be able to refuse to hire and be able to fire people with disabilities at will, and may no longer have to provide employees with disabilities reasonable accommodations in the workplace.”

JONES: An amendment to the ADA being floated in Congress would put more burden on the people with disabilities who complain about inhospitable conditions. So, in addition to things like having to deliver a complaint to the offender in person, we ourselves would have to specify all of the things that need to be corrected and then wait 90 days for the offender to remedy the situation before being able to sue for damages. In other words, we do all the offender’s homework and do not get compensated for the time it takes us to do that. I hope this amendment never sees the light of day.

As for the ADA cases that are working their way through the Supreme Court, I would say we are not going to see a wholesale nullification of the law in one fell swoop, but a gradual chipping away at it, a slow evisceration of it until there is nothing left. Society’s response to the ADA seems to be one of “why should we have to do this for you?” The business community—as well as most of the cities, counties, and states—have been against the ADA from the start.

RM: What new challenges to the ADA do you think might arise in the future, and how will these be addressed?

JONES: I think the biggest struggle will be over the question of how disabled is disabled? Last year, there was the Supreme Court decision in the case of the two women with corrected 20-20 vision who wanted to be airline pilots but were denied the opportunity by the airline on the grounds that their uncorrected vision did not meet minimum standards. The women sued under ADA, but lost because of assistive technology. One of the justices made the point that if an amputee received a prosthetic leg and could again walk, he or she would no longer be disabled and therefore would be ineligible to sue under the provisions of the ADA. The illogic of that reasoning is apparent when you consider someone in a wheelchair. Because that piece of assistive technology ameliorates the person’s inability to walk, that now means he or she is no longer disabled? How absurd.

VAN ARNEM: The burden to enforce discrimination under the ADA falls to the disability community. However, the commitment needed to file a complaint and negotiate the hurdles to prosecute noncompliance is a nightmare. I know because I have done it. The ADA implementation strategy is to “educate, negotiate, and litigate as last resort.” The truth is, people with disabilities as a group still occupy an inferior status in society.

Access to health care

RM: What about the status of rights for the disabled relative to health care and rehab services?

VAN ARNEM: The ADA left health insurance virtually untouched.

RM: In what ways are managed care and the Balanced Budget Act perhaps doing the unexpected and actually helping rather than hurting the rehab and general health care interests of the disabled?

JONES: They are not helping at all. People with disabilities are being kept away from the care they need. Because managed care views everyone as being the same, it does not allow people with disabilities the greater share of clinician time and attention they require and that adversely affects the rehabilitation services they receive.

VAN ARNEM: Changes such as shortened lengths of stay, cutting equipment sources, and personal assistant funds have made it difficult or impossible for people with disabilities to receive adequate care.

RM: What would be your prescription for remedying the situation?

VAN ARNEM: My prescription is to empower individuals with disabilities to shape change to meet their needs. The remedy includes rallying the disability community together to make the change that is beneficial to us, like affordable health care that is self-directed—allowing the people to make health decisions for themselves. This can be done only through legislative change.

The role of rehab professionals

RM: How good a job are rehab professionals doing in helping their clients exercise their rights?

KEMP: I have to say that the overwhelming majority of rehab professionals are truly undervalued and underrated in that respect. They are making a difference in the lives of so many people. However, what people with disabilities must understand is that the rehab professionals in their lives cannot be expected to always stand by their side and be aggressive advocates for them. In the current health care model, we may be the consumer of services, but we are not the customer. The customer is the one who pays the bills, and that is almost always an insurance company or the government. If people with disabilities could be empowered to shop for and buy rehab services themselves, it would make them both the customer and the consumer.

RM: What advice would you offer to rehab providers who want to have a greater impact in helping the disabled live at their highest level of functioning?

JONES: Join us in the trenches of advocacy. Help us demand of legislators the changes needed to improve our access to quality care and support services. Go to your employers and see whether they are dragging their feet on compliance with the ADA—and, if so, push for change. I think the one thing rehab professionals need to understand is that unless society is accessible to people with disabilities, all their efforts at successful rehab are for naught, meaningless.

VAN ARNEM: My personal advice for a rehab provider who provides services to a person going through the rehab process is to never let a person wait to feel better emotionally or physically to start participating in life. The time may never come.

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