RESEARCH Business Government

THE DISABLED
Government not keeping up with changes in disability care

Mark Reutter, Business Editor
(217) 333-0568; mreutter@uiuc.edu

3/1/03

CHAMPAIGN, Ill. — Half a million mentally retarded and developmentally disabled Americans live with their elderly parents. That number is expected to double during the next 25 years, posing a potential crisis for the care of disabled adult children.

Although there are many government programs focused on the elderly and the disabled, "they rarely share resources and often compete with each other for public resources," Luana Olivas wrote in the current issue of the Elder Law Journal. As a result, "aging parents seeking services for themselves and their disabled child have to navigate, often unsuccessfully, between two massive systems to meet their family’s needs."

Deinstitutionalization of the disabled began in the 1970s with a series of judicial and legislative changes. By the early 1980s, states began closing residential institutions in significant numbers. "Whereas families used to be pressured to ‘put their children away’ from birth, they are now expected to be substantially involved in their care, if not directly responsible for it," Olivas wrote.

Government programs have not kept up with these major changes in disability care. Currently, disability services are generally centered on rehabilitation, vocational training or special education. Funding for these services are made available to the states through various federal programs. Many are need-based and benefit the aged, blind or disabled.

To finance long-term care for the disabled, states receive Medicaid reimbursements from Washington and use them to underwrite institutions qualifying as Intermediate Care Facilities for the Mentally Retarded. Medicaid funds also finance community services and support groups through the Home and Community-Based Services waiver program. These waivers provide funds intended to help an elderly or disabled person live at home or in a community setting rather than in an institution.

According to Olivas, an editor at the journal, the problem with these programs is the lack of coordination – and direction. The money saved from closing state institutions for the retarded and disabled was not redirected to funding long-term care. Moreover, there has been almost no research on how to design family-based programs involving aging parents with disabled children, and, so far, little provision for the care of the disabled whose parents die or become incapacitated except on an ad hoc crisis basis.

"What little is known about the needs of aging caregiving parents is that their most pressing concerns including the availability of alternative housing, home-care assistance, financial planning for their child and guardianship options. These concerns change over time, affecting the type of help they need."

Comprehensive research is necessary to assess potential solutions to these and other problems, the author concluded. The Elder Law Journal is published by the University of Illinois College of Law.