This is a generic problem for people who have severe disabilities, Regier said. It speaks to the need for affordable housing and better links between public and private systems. Sometimes the best services for people with serious mental illnesses are found in the public sector, but they cannot get to these services until they spend down their resources and become eligible for Medicaid.Advocacy Concerns
Because people with mental illnesses who are covered by private health insurance are probably not receiving housing assistance from the federal government, their particular housing concerns are less likely to be addressed by mental health care advocates.
With the federal budget in deficit, advocates are focused on preventing cuts to existing programs at the U.S. Department of Housing and Urban Development (HUD) that serve people in the most desperate straits. These include the Shelter Plus Care program for homeless people and rental assistance provided through the Section 8 and Section 811 programs. (Several nonprofit organizations are also trying to address housing concerns. For more information, please see the news brief on p51 in the printed version of this issue--Ed.)
"HUD programs are underfunded relative to the need of people out there with worst-case housing needs," Andrew Sperling, deputy executive director of policy at the National Alliance for the Mentally Ill (NAMI), told PT. "And they tend to be triaged in the sense of getting assistance to those most in need."
Members of NAMI consistently identify access to safe and affordable housing as one of the biggest concerns for families that are responsible for the care of a person with serious mental illness. A national survey of NAMI membership found that 42% of people with severe mental illness lived with their families and that 11.2% lived with other relatives. Only 14% live in supervised community housing.
"It is very clear that the evidence from these studies and surveys demonstrates an impending national crisis for people with serious brain disorders and their families," NAMI member Margaret Stout told a Senate committee in 1998. "The public system intended to meet the housing and community support needs of people with severe mental illnesses is simply not equipped to handle existing demands for services, much less the estimated infusion of seriously disabled adults when their parents die."
No significant policy changes have occurred to address the issue since that testimony, Sperling told PT. But the graying of NAMI members continues. The issue is becoming critical as a large number of baby-boom children with serious mental illness continue living with their parents. As these parents move into their 70s and 80s over the next decade, they will no longer be able to care for their children at home.
Sperling explained that the stable housing environments in their parents' homes have helped keep many people out of institutional care. However, there is not a lot of data on the phenomenon because it is a difficult trend to track.