There has been a lot of action in Washington regarding health and disability issues since my last update in Quest (vol. 5, no. 6), and there are several important proposals being considered. Here's a quick summary of some of the highlights.

IDEA SERVICES

During the first half of 1999, the main action was in the U.S. Supreme Court, which made several important decisions affecting people with disabilities.

In Cedar Rapids Community School District vs. Garret F. (No. 96-1793, March 3, 1999), the court, in a 7-2 vote, held that a ventilator-dependent high school student with quadriplegia was entitled to continuous nursing services under the Individuals with Disabilities Education Act (IDEA).

Garret F. required urinary bladder care, suctioning of his tracheotomy, repositioning, ventilator checks, observation for respiratory distress and assistance with eating and drinking. Garret's parents asked the school district to provide these services while he was in school. The district, believing that it wasn't obligated to provide continuous, one-to-one nursing services, refused.

The lower courts ruled that the school district was financially responsible for providing these services. The Supreme Court, with Justice John Paul Stevens writing for the majority, affirmed, saying that such services are necessary to help fulfill the purposes of the IDEA, which guarantees that students with disabilities are integrated into public schools.

HOME VS. HOSPITAL

In May and June, the court decided five cases that will have a significant impact on how the Americans with Disabilities Act (ADA) is interpreted and applied.

In Olmstead v. L.C. (No. 98-536, June 22, 1999), two women with mental disabilities and their treating professionals asked the state of Georgia to move them from a state psychiatric hospital and to provide them care in a less restrictive setting such as a group home. The ADA and its regulations require that services to people with disabilities be provided in the most integrated setting appropriate. The question before the court was whether the ADA prohibition of discrimination compels the state to place those with mental disabilities in community settings rather than in state institutions.

Justice Ruth Bader Ginsburg, in writing the 6-3 decision, answered with a qualified yes. She ruled that placement in a community setting is required where it "can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities." Ginsburg found that "confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment."When there's no medical reason for the isolation of people with disabilities in large state institutions, the result is discrimination.

Disability rights groups consider this decision a major victory that will make it easier for people with various disabilities to live in more integrated settings. However, it also gives states some flexibility by allowing them to take cost into account when making placement decisions. Under this ruling, states are required to make "reasonable modifications" in their programs so that qualified people with mental disabilities are placed in less restrictive settings, but it doesn't require that all state psychiatric hospitals be closed.

EMPLOYMENT AND THE ADA

Three other cases decided on June 22 dealt with the employment provisions of the ADA, defining its criteria for determining who is disabled and therefore protected from discrimination under that law. The cases involved employment disputes, presenting the previously unsettled issue of whether physical problems that can be kept in check, such as nearsightedness and high blood pressure, qualify as disabilities. The ADA prohibits employers from discriminating against a "qualified individual with a disability" because of the disability, and defines disability as a condition that "substantially limits" a "major life activity" such as seeing, walking or breathing.

In the leading case, Sutton et al v. United Airlines (No. 97-1943), twin sisters who met the federal vision standards for pilots and who flew for regional airlines applied to work for United Airlines. Both women were very nearsighted but with glasses or contact lenses had fully corrected vision. United required all pilot applicants to have uncorrected vision of 20-100 and therefore refused to consider their applications.

The pilots argued that this constituted discrimination on the basis of disability. They said that, in defining disability under the ADA, whether an impairment is substantially limiting should be determined without regard to corrective measures.

The majority of the Supreme Court disagreed. Justice Sandra Day O'Connor, in the 7-2 decision, held that the women's poor eyesight, because it could be corrected, didn't substantially limit a major life activity and, therefore, they weren't part of the class of people protected from employment discrimination by the ADA. She ruled that, in writing the ADA, Congress didn't intend to bring all those whose uncorrected conditions amount to disabilities under the law's protection.

The two other cases involved a truck driver blind in one eye and a mechanic with high blood pressure. In both cases, the court said the employees didn't fit the ADA's definition of being disabled.

Disability advocates complain that these decisions create an absurd result: The employees lost, or weren't considered for, jobs because they were disabled, yet they weren't disabled enough to be protected by the ADA. Along with dissenting Justices Stevens and Stephen Breyer, advocates believe it's contrary to the goal of the ADA for those who have taken steps to correct and cope with their disabilities, making themselves more employable, to lose protection against employment discrimination as a result.

Business groups view these decisions as a significant victory, hoping they'll clarify employers' responsibilities when hiring and, at the same time, reduce the number of employment discrimination lawsuits while still protecting people with substantially limiting disabilities.

These decisions will narrow the application of the ADA, but they may have little effect on people with neuromuscular diseases who use wheelchairs or ventilators. O'Connor, in the Sutton opinion, recognized that in some cases, even when corrective measures are used, a person may still have a substantially limiting impairment.

She writes, "Individuals who use ... wheelchairs may be mobile and capable of functioning in society but still be disabled because of a substantial limitation on their ability to walk or run." The rule now appears to be that if an individual is substantially limited in a major life activity because of disability, despite any corrective measures, then the ADA protections against employment discrimination still apply.

Finally, in Cleveland v. Policy Management Systems Corp. (No. 97-1008, May 24, 1999) the court unanimously held that applying for Social Security Disability Insurance benefits didn't preclude a job discrimination suit under the ADA.

EXECUTIVE ACTIONS

In the executive branch of our government, the Department of Justice (DOJ) has brought suit against several movie theater chains, alleging that their theaters with stadium-style seating discriminate against people with disabilities in violation of Title III of the ADA.

In these cases, the stadium-style seats are placed on risers, relegating those who can't climb stairs to inferior seating, often at the very front of the theater just a few feet from the screen. DOJ argues that this violates the ADA's requirement to provide wheelchair-seating areas with sight lines comparable to those from other seats. (For more on stadium-style seating, see "The Verdict," Quest, vol. 6, no. 3.)

Beginning in July, the Social Security Administration raised from $500 to $700 monthly the earnings from work an individual with a disability (other than blindness) may have before he'll ordinarily be considered to be engaged in "substantial gainful activity" and, therefore, lose eligibility for Social Security Disability Insurance and Supplemental Security Income benefits based on disability. (For another proposed change in Social Security policy relating to employment, see "Progress Report.")

LONG-TERM CARE

In the political arena, President Clinton is proposing several health- and disability-related policy initiatives in his last year and a half in office. One is a four-pronged initiative to give families assistance with long-term care.

Today, most daily care for people with serious illnesses and disabilities -- such as bathing, dressing, driving, feeding, etc. -- is provided informally, primarily by family members who are unpaid and largely unrecognized. The Alzheimer's Association estimates that this "invisible" health care totals $196 billion a year, a massive subsidy to the nation's chronic care system.

It's estimated that two out of five Americans will need long-term care at some time in their lives. Along with a shrinking number of family caregivers and a bias toward institutionalized care in federal Medicaid programs, the increasing need for long-term care could lead to a crisis: less care available at home, poorer quality of care and severe stresses on family caregivers.

Clinton's first proposal is to provide a tax credit of $1,000 for people with long-term care needs or for the families that shelter them. Clinton believes it will be less expensive to spend this money to help keep the elderly and the disabled at home, where they prefer to be, than to use it for placement in nursing homes or other facilities.

The second prong of Clinton's initiative is the creation of a national family caregiver support program. This national network would support people caring for disabled and older Americans by giving them access to information and community resources. It would also enable states to create one-stop shops where caregivers could access the resources of the community, find technical guidance, and obtain respite and adult day care services.

The third part of the initiative is to educate Medicare beneficiaries about long-term care options, many of which aren't covered under Medicare. The fourth part would have the federal government offer its employees long-term care insurance, setting a national example and benefiting an estimated 300,000 employees.

In a June 23 letter of support for the long-term care initiative, MDA's National Task Force on Public Awareness said, "Clinton's $6.2 billion initiative is a small contribution toward an increasingly expensive social problem, but in its support of family caregivers, its educational elements and its initiation of a federal long-term care insurance program, it is an important start."

The MDA task force also endorses passage of the Medicaid Community Attendant Services and Supports Act (MiCASSA). This bill is aimed at Medicaid's bias toward nursing homes by giving beneficiaries more options for long-term care at home or in other community-based settings. The Task Force called MiCASSA an important first step in addressing issues of choice, quality and cost in long-term care. This bill is expected to be introduced in Congress this year to replace H.R. 2020, which wasn't passed in 1998.

HEALTH CARE

Clinton also proposes to use part of the federal budget surplus to protect and reform Medicare. He'd like to add a new voluntary "Part D" prescription drug benefit, which would provide up to $2,000 in prescriptions for low-income beneficiaries. Other beneficiaries could, for an additional premium, purchase coverage to pay for up to half of their prescription drug costs up to $5,000 a year. The benefits would be phased in over several years.

The president's plan would also make an important change to the private insurance policies that supplement Medicare. He would require these Medigap policies to include individuals with disabilities in their initial six-month open enrollment periods.

In Congress, Republican leaders say Clinton's plan doesn't include the significant structural changes that are needed to save Medicare.

Democrats and Republicans are also arguing about proposals to reform managed care. The president and congressional Democrats favor a "patients' bill of rights" that ensures access to health care specialists and emergency room services and protects patients from having their doctors changed by the health plan in the middle of treatment. The most controversial protection sought by the Democrats is the right to sue health plans and collect damages when treatment is withheld. The Republicans believe these measures are too expensive and might force employers to drop coverage; they're backing legislation that would provide fewer protections and cover fewer Americans.

The Amyotrophic Lateral Sclerosis Treatment and Assistance Act of 1999 (H.R. 353) was introduced in January by Rep. Lois Capps. The bill would waive the 24-month waiting period for Medicare eligibility for people with ALS and has 193 co-sponsors in the House, as of late July.

ACCESSIBILITY FOR VOTERS

The Improving Accessibility to Voting for Disabled and Elderly Americans bill (S. 511) has been introduced by Sens. John McCain and John Kerry to ensure the equal right of people with disabilities to vote. This bill would amend the Voting Accessibility for the Elderly and Handicapped Act, which, when passed in 1984, was supposed to ensure that disabled Americans would have access to voter registration and polling places.

According to a Federal Election Commission report, during the 1992 election there were at least 19,500 inaccessible polling facilities. McCain believes the number of inaccessible polling places is actually much higher because of the way the report was put together. The bill seeks to eliminate barriers preventing millions from participation in our democracy.

The Supreme Court's decisions can be found on the Internet at www.findlaw.com/casecode/supreme.html. The progress of Congress can be followed at its Web site, thomas.loc.gov. This site provides addresses of members of Congress, where you can write to express your opinions on pending legislation.

Bill Altaffer, a Tucson attorney and member of MDA's National Task Force on Public Awareness, writes frequently on governmental issues.