"Rewriting the Myths, Redefining the Realities"
by Homer Page
On June 22, 1999, the Supreme Court handed down its landmark decision in the Olmstead case. Olmstead originated in Georgia and involved two women with disabilities who desired to live in an integrated setting. For the first time the court affirmed the right of persons with disabilities to live in the most appropriate integrated setting. "It’s what we have been fighting for 30 years," said Stephen Gold, an attorney with the Public Interest Law Firm of Philadelphia. "It is a very good decision," Gold said. "If you put this in context, you see that for 150 years persons with disabilities have been dumped into institutions, and now for the first time the decision has been made at the highest level that this just isn’t appropriate. It’s a turning point in the way we think about persons with disabilities."
Gold said that he couldn’t give the decision an excellent rating because of two provisions that are likely to lead to additional litigation. Budgetary considerations may be taken into account by a state, when considering the provision of services, and a state is not required to alter its fundamental programs. In many instances a case-by- case struggle will still need to be waged to free persons from institutionalization. Yet the principle is clear. Each person has the right to live in the most integrated appropriate setting.
Budgetary considerations are most likely to affect the balance of funding between institutions and community-based services. Gold cited the Pennsylvania arrangement, where 96 percent of the funding goes to institutions and only 4 percent to HCBS. "This is clearly inappropriate," he said. "But it may take litigation to change it." Gold warns that each case will now have to be presented very carefully, since if states want to resist deinstitutionalization, they have only procedural grounds to fall back on. It will be necessary to prove what the most integrated appropriate setting may be.
The second limitation to the Olmstead decision involves the concept of a fundamental alteration in a state’s program. A state is not required to fundamentally alter its services to meet the needs of an individual. Mr. Gold explained, "Each state offers attendant services, so it isn’t an alteration for someone to want attending care in a community setting. However, not every state offers housing; thus it would be a fundamental alteration to require housing services from those states that do not currently offer a housing program." This concept may also require further clarification in the courts.
In the months before the Supreme Court decision was handed down, ADAPT organized a grassroots effort to persuade the states to withdraw their support from Georgia in the Olmstead case. Initially, 22 states offered support, but by the time that the case was argued before the court, all but seven had withdrawn. Gold said that this was a very important development that did not go unnoticed by the court. Footnote #8 of the decision makes reference to the abandonment of Georgia by most of the other states. "All the work made a difference," he said.
Joe Ehman, a leader of the ADAPT effort to persuade Colorado to withdraw from the Olmstead case, called the decision "a guarded victory." Ehman agreed with Gold that for the first time the principle that persons with disabilities should be served in the most integrated setting is the law of the land. He believes the most important consequence of the Olmstead decision in Colorado may be to speed up services to persons on waiting lists who wish to move from an institution to an appropriate integrated community setting. Marcia Tewell, Director of the Denver ARC, estimates that there are 2,500 persons with either cognitive or mental health disabilities in Colorado who are on waiting lists for community-based services. She believes that the Olmstead decision may help expedite services to these persons. Ms. Tewell said that "some of those on waiting lists currently live in state institutions, and some live in nursing homes, but most live with friends, or family members or on the street. Because of the limits set up in the Olmstead ruling, it may take additional litigation to free funds for providing services in integrated settings."
A recent ruling by the Missouri Supreme Court may be a case in point. Prior to Olmstead, the Missouri court ruled that the state did not need to provide assistance with money management and other tasks of daily living to a cognitively disabled plaintiff who wished to live in the community. Olmstead provides grounds for overturning this decision, although care will have to be taken to demonstrate that similar services are currently being offered and that funding such services will not destroy the state’s budget.
Florida currently restricts home health care visits for a quadriplegic to one two-hour visit in a 24-hour period. Thus a person may get up or go to bed, but not both. Since this effectively prohibits a person from living independently, Olmstead can help to bring change to Florida. Such a policy clearly discriminates by forcing an individual to live in an institution. A court challenge will have to address the budgetary implications. While integrated living may be cost effective, that may need to be demonstrated.
In Texas and Colorado efforts to close state-run institutions have met with strong opposition from state employee unions, local officials concerned about the effect of closures on their local economies and risk averse family members who want safe, secure, well-funded programs for their children and siblings. Even with Olmstead the struggle to transfer funds from these institutional programs to integrated ones will be difficult.
In Pennsylvania, 96% of the budget is committed to institutional settings. Olmstead affirms that such an imbalance is likely to be discriminatory. Still a person who wishes to live in a community setting will need to establish that the state will not experience a budgetary hardship. Powerful forces will be trying to protect their vested interests in the institutional system. Colorado presents still another problem. It operates under a citizen-initiated government-spending limit. HCBS programs must battle with all other state funded programs, if additional funding is to be available to provide services to those on the waiting lists who are not currently receiving services. New money will need to be carved out of existing programs. Olmstead is likely not to provide much leverage in this scramble for scarce revenue.
If the promise of Olmstead is to be realized, there must be appropriate HCBS programs. A cardboard box and a soup kitchen do not constitute an appropriate integrated setting. We should not underestimate what the Olmstead decision means to persons with disabilities, but we should not overstate its worth. There are still legislative battles, court cases, administrative appeals, and painful waiting ahead before the promise of Olmstead is a reality. Barbara McDonald, Colorado Deputy Attorney General, calls Olmstead a good decision, even though her office supported Georgia before the Supreme Court. "It is a balanced decision," she said. "The principle is established. People with disabilities have the right to live in integrated settings. Now the states and the disability community can get on with the business of making it work for everyone."
Mike Auberger, national organizer for ADAPT and a driving force behind Olmstead, said, "The court’s decision is a tremendous victory for persons with disabilities. Many of the limitations in the decision were already present. For example, the concept of undue financial burden is not new. What we must now do is get on with our legislative agenda. We need the Congress to enact our "Mi Casas" bill, and I am sure that we will be drawn into further litigation. Still, for the first time ever, it is the law of the land that persons with disabilities have the right to live independently. That fundamental freedom will not be taken from us. There is a momentum building in Congress and across the nation. The disability community is a force that will be heard."
Copyright 2002 A&H Publishing Corporation