Parents ponder difficult choices as their mentally ill children enter adulthood

By Ellen Futterman, Editor

No one knows what the future holds, but it’s especially concerning among parents in the Jewish community who have children living with a mental illness, many of whom are in their thirties, forties, even fifties.

That’s because aging parents aren’t sure what will happen to their mentally ill children — where will they live, if they can work, who will look after them — after they, the parents, are gone. Jewish families of certain means can set up trusts and arrange for caretakers to make sure their adult children are looked after throughout their life. But for most people who cannot afford this luxury, the future is precarious, if not downright scary.

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“I think about what will happen to Jason when I am gone all the time,” says Lynda Wilson, 69, whose son, Jason, 41, has bipolar disorder.  “Jason calls me everyday to check in. He receives federal disability, which allows him to live independently, in a small house with a roommate, but that might not always be the case. He hasn’t been able to work in more than a decade because of his mental illness.”

Lynda, who is a single parent, says Jason has “zero contact” with his father in Texas. She has two other grown sons, but she doesn’t think it’s fair to expect them, or their families, to watch over Jason the way she does. “They don’t have the time to spend a half-hour to 45 minutes on the phone with Jason every day,” she says. “His future is a great concern.”

Housing and jobs and ultimately their futures, says Neil Marglous, are among the biggest concerns parents have when it comes to their mentally ill children.

“Trying to find a job in this economy is hard enough, but for people with a mental illness who at best may only be able to work part-time, it’s very, very difficult,” says Marglous, who is one of the co-founders and organizers of Jewish Attention to Mental Illness (JAMI). The group, which meets the third Tuesday of the month at the Jewish Federation Kopolow Building, serves as a support group for families dealing with mental illness.

“Housing is a huge problem,” reiterates Michael Keller, executive director of Independence Center, a nonprofit organization that assists adults in the St. Louis area with serious and persistent mental illnesses to live and work independently.

“There is not enough wholesome, affordable housing for people with severe mental illness in St. Louis,” he adds. “We have 71 units of our own and feel badly we don’t have more. But it’s not just acquiring them or getting them built. It’s also having the budget to run them.”

Although Independence Center is not a Jewish organization, Keller says, “I know we have Jewish residents in several of our facilities.”

While Esther Scharf praises Independence Center and other organizations like it, she says these options “would be the last choice for many people in the Jewish community because (the housing) is nowhere near any Jewish facilities.”

“There is something about a spiritual connection that almost every (mentally ill) person I see has and wants, no matter how sick they are,” says Scharf, a social worker with Jewish Family & Children’s Service. She points out that often times, people with severe mental illness do not have cars and are tight on money, even if they are receiving federal disability.

“Because of their behavior, they may not be allowed on a bus or are too nervous to take a bus,” she says. “Access to the Jewish community then is an issue.”

Lesley Levin agrees. She thinks it’s less about not having enough housing and more about where the housing is located. “Jewish St. Louisans tend to be suburbanites,” says Levin, executive director of Behavior Health Response, which provides 24-hour access to mental health services throughout the greater St. Louis region. “Parents don’t want their mentally ill adult children living in city.  They want them to be in Chesterfield and Creve Coeur and Ladue, where they live. But the people in these suburbs don’t want mentally ill people living in their neighborhood. So it’s hard to get housing for Jewish families that they deem appropriate for their loved ones.”

That may explain why Rabbi Elizabeth Hersh is seeing more senior adults, people in their eighties and beyond, taking care of mentally ill children in their fifties and sixties. She also says she sees more young adults without any other options living in nursing homes, which can exasperate their mental illness and even cause situational depression.

“They feel so isolated. They just kind of give up because they feel they have lost any quality of life,” she says.

Susan Scribner, Senior Planning & Allocations Associate at Jewish Federation of St. Louis, heads a subcommittee that is looking at caring for “Jews in Need,” figuring out “the needs and gaps” in the community in an effort to address them. Whether the committee will decide to fund services for Jewish people suffering with a mental illness is anyone’s guess at this point. 

“We are in the very initial stages, looking at all of the allocations we make in the human service area and what we have not gotten into so far that we should be looking at,” she says.  “Kosher nutrition, for example, is a program that no one but us will provide. So the question becomes where can we hand off services to the general community that are already there and where do we need to create new services?

“We’re trying to figure out with limited funds where to target our Jewish dollars more wisely.”