Housing Concerns Loom Large for Patients

As part of its task to conduct a comprehensive study of the U.S. mental health care system, the President's New Freedom Commission on Mental Health held its second meeting last November to focus on the critical role that housing plays for people with mental illness.

Most discussions about housing focus on the public sector, where the majority of people with serious mental illness receive treatment and where the supply of safe and affordable housing is in short supply.

Housing is also a concern for the private sector. Patients with serious mental illness who are seen in private practice settings are of a different socioeconomic status than those treated in the public sector, but they still run the risk of losing the supports that keep them from entering the public system--namely employment, insurance and housing.

People under psychiatric care who are in the middle- and upper-income brackets often have family support above and beyond what is available to individuals in the public sector, Darrel Regier, M.D., executive director of the American Psychiatric Institute for Research and Education at the American Psychiatric Association, told Psychiatric Times.

However, that support is not guaranteed for life. Housing concerns are especially severe for aging middle-class parents who are providing for an adult child with mental illness. Their support, at the very least, helps keep the person out of the hospital and, in other cases, allows the person to hold down a job and receive private insurance benefits.

"The main worry in their lives is when they die, who's going to take care of these kids, and are they going to have adequate services for chronic illness?" Regier explained.

Those services include housing, drop-in centers and case management for coordinating the full range of medical care and other supports. While some parents will leave a nest egg that will provide their child with housing, the majority of parents will have exhausted their reserves on long-term health care costs that exceeded their insurance.

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.

A number of families have anticipated future problems by establishing a special needs trust. This type of trust, which holds the title for the house, allows the adult child with mental illness to continue living in the parental home without losing eligibility for Supplemental Security Income and Medicaid. On the other hand, many families have not prepared, Sperling said. In addition, other issues arise, such as whether the child can maintain the house and keep up on property taxes and other financial obligations.

A Cornerstone for Care

If a person lives in substandard housing, whether it is the result of a low-paying job or being unemployed, chances are they won't be receiving ongoing services, according to Wendi Cook, program coordinator for adult mental health services at the National Mental Health Association. Most often, the person is more concerned with being safe in the community, or staying warm or having enough to eat.

Consequently, when the person does receive services, often they are the most expensive kind, such as emergency department visits and incarceration, Cook told PT. And, once they get into the health care system, they usually end up in psychiatric institutions. This dynamic puts a financial strain on the entire system, from publicly funded programs to the clinicians and facilities that care for the patient.

If someone lives in substandard housing and a crisis occurs, most likely the person will eventually lose their home and end up on the street. At that point, it becomes a much larger community problem.

People with mental illness who are employed and receive private insurance are not immune from this. Most people are two paychecks away from homelessness, Cook said. An increase in insurance premiums, a layoff or a long-term crisis that affects employment can quickly push a private-sector patient into the public sector.

Policy changes currently being debated in Washington, D.C., might make that transition even more difficult. Currently, HUD's budget is set up so that a portion of its money goes to housing and a portion goes to services, Cook said. The goal is to get people into services that help them maintain housing.

However, the Bush administration is seeking to channel most HUD money toward housing, rather than services. In theory, those services would be picked up by the U.S. Department of Health and Human Services (HHS), but that does not appear to be happening, Cook said. People will receive housing but not the services that help keep them housed unless this issue is addressed. As budget proposals for 2004 make their way through Congress, mental health care advocates will be pushing for HHS to designate services for people in low-income housing who otherwise would have received service supports through HUD.

The Fortunate Few

Regier has a patient with schizoaffective disorder who he has followed for 20 years. The patient was lucky to have parents with enough money to set him up with a condominium that was completely paid for before they died. He also has a healthy sibling who keeps track of him.

The patient holds a job as a clerk typist in a federal government office. He is a smart man with a college education and the ability to speak three languages. Still, Regier has to see him once a week for 15 to 20 minutes to keep track of medications, side effects and his overall condition, which can include mania, depression or psychosis.

The patient has no housing problem because his family has been able to give him the support he needs. This, in turn, makes it easier for him to keep his job. And that allows him to enjoy federal insurance benefits. Those supports make it more likely that he will keep his house.

However, if a patient loses any one of the three--the job, the benefits or the house--things can quickly spiral out of control.

In the private sector, Regier said, there tends to be a focus on patients who walk through the door and can afford care, and not as much attention to the system as a whole, but the public safety net of housing and services is crucial.

"Once you lose that job, you're vulnerable, even as a middle-class person," Regier said. Usually, private practitioners become aware of this only if it happens within their own families or with long-term patients who have a sudden demise. At that point, the psychiatrist must decide whether to continue with the patient. If the resources just aren't there, the patient may very well be out of luck.

It is a problem that all private practitioners worry about to some degree, Regier said. If family support disappears and a patient loses housing or a job or both, what can the clinician do?

Once a patient winds up on Medicaid, they have to struggle with a public-sector system that is under its own financial pressures. In Montgomery County, Md., for example, Medicaid services are provided through a fee-for-service reimbursement model in which categorical programs have been increasingly defunded.

That's when people start falling through the cracks, Regier said. If you don't have the categorical funding for case management in a fee-for-service managed care model, you've got a real problem. People begin missing their appointments, and no one is there to help manage their money. They miss their rent payments and wind up on the street.

Commission Hearing

The New Freedom Commission is aware that housing and supportive services would go a long way toward preventing this cycle. "We need more housing, not just more Haldol [haloperidol]," said one patient, commenting on the commission's interim report.

Confirming what many already know, the report said that affordable, safe housing is difficult to come by in the public sector. The wait for subsidized housing is two years or longer. Transitional housing is lacking, forcing many people released from psychiatric institutions to live in the streets.

Tanya Tull, president and CEO of Los Angeles-based Beyond Shelter Inc., told participants at the commission's November forum that Americans have come to look on homelessness as an inevitable and acceptable problem. The country's patchwork of emergency shelters and transitional housing perpetuate homelessness, which can only be addressed with permanent housing.

Tull embraces a housing first philosophy. Getting homeless people into permanent housing should be a program's central goal, she said. Providing permanent housing assistance up front can significantly reduce the time people spend being homeless. Necessary services include crisis intervention and stabilization, intake and assessment, targeted assistance for moving into permanent housing, and home-based case management.

Studies have demonstrated that supportive housing produces a number of positive outcomes, Carol Wilkins, director of intergovernmental policy at the Oakland, Calif.-based Corporation for Supportive Housing, told the commission.

Emergency department and hospital visits can drop by more than 50%, Wilkins said, and the use of primary care services to address substance abuse problems increases. Supportive housing also improves participation in work and employment services.