By Stephen F. Gold
and Evie Cai
On July 26, 1990, President George H.W. Bush signed the Americans with Disability Act (ADA) into law, declaring that the statute "takes a sledgehammer to . . . a shameful wall of exclusion . . . which has for too many generations separated Americans with disabilities from the freedom they could glimpse but not grasp."
Since then, we have seen significant change for people with disabilities. Most city streets have curb cuts, stores have accessible bathrooms, and even some playgrounds are disability-friendly. Progress has also been solidified into law. The 1999 Supreme Court decision in Olmstead v. L.C. held that public agencies are required to provide services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities" under Title II of the ADA.
However, the past 25 years have shown that the arc of freedom bends slowly, especially for institutionalized disabled people. Disabled individuals are often relegated to nursing homes even though multiple national surveys report that 90 percent of Americans would choose to live and stay in their own homes and communities if they had a choice. According to the most recent data from the Centers for Medicare and Medicaid Services, a quarter of a million Americans in nursing homes are under 65 years old, and 10,500 of those individuals reside in Pennsylvania. They are not able to partake in the "bright new era of equality, independence, and freedom" promised in 1990.
Pennsylvania spends public funds to keep disabled individuals unnecessarily institutionalized rather than providing the housing they want and need. It costs Medicaid $80,000 annually to care for the average occupant. Pennsylvania could save $47,300 for each person who moves out of a nursing home and receives community-based services in an integrated setting, saving Medicaid hundreds of millions. This has not happened.
The good news is that sledgehammers are not necessary. There are some very simple steps we can take to benefit both the disabled community and the commonwealth as a whole.
Access to information is crucial. Most people are not informed about the availability of community services before they enter a nursing home, and, as a result, few are given the choice to live in an integrated setting. Many do not know that community-based home health aides are available and are unaware of the hours and services aides could provide. Many require assistance in nursing homes for only one or two activities of daily living that could easily be provided in the community. Many family members and other informal supporters also do not know of community options beyond the nursing home.
Lack of general knowledge of community services is mostly due to the fact that in nearly every state, including Pennsylvania, state Medicaid officials learn that a person has entered a nursing home only after the facility sends the state an invoice for Medicaid payment. This usually happens several months after the individual has settled into the nursing home; by then, the person may have lost an apartment, informal and family supports, and the will to live independently. Pennsylvania officials should be required to offer Medicaid-funded home and community-based services before they pay nursing homes for institutionalized residents.
Second, accessible housing must become part of all future publicly funded housing. Accessible dwellings are in very short supply, and hundreds of Philadelphians are in nursing homes solely because they have lost their apartments and cannot find accessible housing. Since accessibility costs are extremely low in new construction projects, this is an easy, cost-effective way to remove yet another barrier to integration.
The 25th anniversary of the ADA is a time for celebration, but also a time for reflection. Offering disabled people a chance to reside in the community with appropriate and necessary services would not only be a step closer to the act's goals, but would also save Pennsylvania money. With a new governor, a new Department of Human Services, and a rapidly aging ADA, we should honor this day with concrete actions to end discrimination and segregation of people with disabilities.