Still Seeking The Promise Of The Olmstead Decision

Posted by Michael Collins in Life After Paralysis on July 20, 2015 # Advocacy and Policy

Those of us living in the United States have been the fortunate beneficiaries of a remarkable series of disability civil rights laws spanning over half a century. Because some of these laws have been in existence for so long, there is an unfortunate tendency to take them for granted. After all, once a law has been established for a while, there is an assumption that people accept it, understand it and should be willing to follow it. The exception to that rule seems to be many of the laws that protect our rights, as there is still resistance to their acceptance, and even implementation, decades after they were passed.

Some of those disability rights laws are almost iconic, since so many people rely on their protections. These include the Americans with Disabilities Act (ADA) of 1990 and 2008’s ADA Amendments Act, with anniversary celebrations being planned this month. While I am extremely grateful for what these laws have meant to those of us who need them, my gratitude is dampened a bit since I know how quickly those protections can fade away.

Most disability rights laws came about because of years of exclusion, abuse or the inability of people with disabilities to enjoy the same benefits and access to their communities as their families, friends and neighbors who were not disabled. Those so excluded became advocates, organized with those who had similar interests, recruited lawmakers to become their "champions" and sponsors of new bills, and then fought tirelessly to get the bills passed with regulations that were enforceable in courtsthroughout the country.

Even as we're planning events to celebrate the 25th anniversary of the ADA, many subway stations, and most Amtrak stations, are still inaccessible to travelers or commuters who use wheelchairs. Until recently, some major American cities have not required their taxicab fleets to have a limited number of accessible vehicles for passengers who use mobility devices. Many of those taxi drivers have the bad habit of driving past people with visible disabilities who are trying to hail a cab, without stopping. That is especially true if those potential passengers happen to be in a wheelchair, accompanied by a service dog, or are carrying a white cane.

Rideshare companies like Uber and Lyft haven't appeared to care about the accessibility of their services, but still get licensed to provide rides in most major cities. I might care more about what that does to existing taxicab companies if they had bothered to become accessible years ago. Instead, for the taxi industry: you're on your own folks.

The built environment can provide many challenges to those seeking the access and independence promised by the ADA. 25 years later, there are still many buildings where people with mobility impairments are unable to use the main entrance or elevators utilized by the general public. Instead, entrance can only be gained through back doors, restaurant kitchens or by using freight elevators normally off limits for public use.

The ADA affirmed the right of all people to be able to receive the benefit of public services or programs in the most integrated setting possible. Most other disability rights laws set up a similar expectation for the populations or services that they covered.

Unfortunately Congress also left the expenditure of some of those funds meant to benefit the disability community to the discretion of individual states. Some programs, like Medicaid, require a greater level of investment from the states for services delivered in a community setting than if they are provided in an institutional setting. With the ability of avoiding the expenditure of funds from their state budgets, many states decline the federal funds altogether or take far less than the amounts to which they are entitled.

Fortunately the Supreme Court took up the issue of unnecessary institutionalization in a 1999 case referred to as Olmstead vs. LC. Two women had sued the state of Georgia, naming the director of the Georgia Department of Human Resources as the respondent, because they were being held in a state hospital for treatment instead of being allowed to receive mental health services in a community setting of their choosing. The Justices recognized that the ADA was correct in describing the isolation and segregation of individuals with disabilities as a "serious and pervasive form of discrimination," and the state was required to let the two women move out of the institution.

The Supreme Court's decision provided an important precedent, a ray of hope, and raised expectations that all disability-related services and programs would become available in the community at the same level as were being delivered in institutions. Instead, we have been facing a continual series of funding reductions or cuts in service at the federal and state levels that make it increasingly difficult to live independently in the community.

New funding or programs, like the recent ABLE Act, often serve very limited populations and require states to set up or administer the programs even as they downsize the number of state employees and cut their state budgets. The Medicaid Waiver program was designed to support transition from institutional to home and community-based services, including personal care assistance, but still serves only a portion of the individuals who might benefit from it since many states choose to opt out of anything that requires discretionary funding.

It takes many pieces of a large puzzle in order for an individual with a disability to remain independent in the community. Getting people with disabilities back to work at competitive wages, and increasing--or at least maintaining--accessible, affordable housing options would help. Despite decades of trying, there has been minimal improvement in either of those areas

Some fairly simple changes in existing policy would enhance independence at minimal cost. Those targets for change include raising the cap on personal savings and income above which people cannot qualify for Medicaid, opening the ABLE Act savings accounts to everyone no matter the onset age of their disability, getting rid of the Medicare in-the-home policy pertaining to purchase of wheelchairs, supporting NCIL and ADAPT in their push to have the Community Integration Act enacted and eliminating the penalty the states now pay for federal funds received to support community-based services as compared to those delivered in institutional settings. Failing to do so will mean even more people with disabilities will be forced to forego their independence and move into nursing homes.

All of the above, and more, are important steps to be taken if the promise of the ADA, as verified in the Supreme Court's Olmstead Decision, is going to become a reality for the large number of people who need it. We can't relax, as there are dozens of new threats appearing almost daily.

Enjoy this month's ADA anniversary celebrations, wherever you are, but don't lose sight of the fact that there is much more work waiting to be accomplished.


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