Demise of the family-initiated housing model for people with mental illness

You must have heard about the family sponsored housing model for those with mental illness. Starting about six years ago, in 2003, a group of us in the Albany-Schenectady area met over and over to discuss plans to make this a reality. We would dedicate our own home or purchase a home together, or leave our home in an estate trust, to our own mentally ill adult child so he and others like him could live there. A not for profit housing sponsor could run the building or we could form a management group to do this. If the building itself was considered unsuitable, an agent could sell it and buy another, or an apartment or condominium that would fit the bill for our surviving mentally ill relative and perhaps another person chosen to live with him or her. The scheme would solve the impending problem of where will our mentally ill relatives live after we are gone, if they can't find government subsidized housing (or are thrown out of it) and can't afford an apartment on the private market.

We thought we had the answers. We went over all the details—about how to buy a house, set up a trust, decide who is to live there and by what rules, who operates the house, who pays the bills, whether this is wanted by our children, and is it financially feasible or just pie in the sky? We had a consultant at most of our meetings over the years 2003 to 2006. We invited in prospective partners from community agencies and a funding source to study more carefully the whole idea of families creating housing with all the risks that entailed. Why would we put money down on a house or leave our house in trust so that others who we may not even know would live there (with our own mentally ill relative)? It still made sense because we thought we could do it better than the government or even the housing providers, given our lasting devotion to our loved ones with these awful illnesses of the brain.

To explain our ideas to others I wrote up the family initiated housing proposals in the NAMI NYS newsletter, we talked it up at NAMI NYS meetings, and we met twice with members of the NY State Office of Mental Health, who responded with encouragement but no pledges of money. At one of our statewide NAMI conferences we held a workshop about this and received dozens of signups from other families who felt the same need and wanted to hear more about our plans. People called us from New York City to ask if their child could come to live in our house once it opened. All this was a harbinger for success. We only had to find the right house to buy or leave one to posterity to make a go of it.

Here is my story--the others have their stories, too. Back in 2003 I decided to buy a house for my son to live in with others like him who are mentally ill. I had the money, housing in Schenectady was quite cheap and I thought I knew the city well enough, as I had lived here over 40 years. Also, like the others I felt a need to secure a place for him (he has a sister who also is mentally ill and she might need a place, too) and there could come a time when the apartment he lives in will no longer be available or he will want to leave. I pictured various alternatives: a big old boarding house for men who could play pool and cards and the like; or a two-family house with men in one unit and women in the other; or a family type home for three or four with a live-in caregiver to be hired; or I buy the house and turn it over to a not for profit housing corporation in mental health to run and take care of the building. I talked to local directors of housing programs and to several parents in the NAMI orbit. While the parents expressed interest, our adult children didn't always seem good matches to live together—the first obstacle.

Toward the end of 2003 I put money down on a two bedroom flat near Union College, had a consultant look over the building and declare it in need of massive rework, so I got my money back. Once again I found a house I liked in mid-city and put money down, hedging my purchase on the need for a new driveway. The owner balked, so my check was returned. The third house on which I signed a purchase agreement proved successful. It was a large two-family in a nice section surrounded by single family homes where families raise their children. I didn't think it appropriate for a house full of mentally ill people to move in there. We shun discrimination of any kind but I had to know that placing disabled adults in a building alongside single family houses with children on a lovely tree lined street is a sensitive matter. You don't do it. So I rented to two families with children and put off my plans.

I thought if one of my tenants moved out I could reconsider leasing the apartment to two or three adults with mental illness. (If you saw our last newsletter for September-October you would have read about my trials this summer to rent to a disabled couple with children in the Section 8 housing program with the Schenectady Municipal Housing Authority. (See namischenectady.org for newsletter.) While the couple didn't eventually receive the apartment I was ready to face the questions: could they afford monthly payments even if the government pays all but 30 percent of their income for rent and utilities? Would they take good care of the building? Would they get along with neighbors? The important thing was that they badly needed a better place to live. They simply lost out to another bidder as time went by and I had to rent.

That was close. It almost worked, although the public housing agency had some crusty rules to break through. The MHA would have paid most of the rent up front, to my advantage. It does not provide case management however. If we are honest, we know people with serious mental illness often don't take care of their room or apartment. I would have had to secure extra help from one of the health care agencies to look in on those tenants. They have occasional crises and someone should be on call when they arise. As the house is in my name, or a trustee, one of us is responsible to see the house is kept in good condition, we must pay for maintenance and repairs, insurance, property and income taxes, and anything else. I think that few people with serious mental illness, the ones who need housing the most, can live independently without home visits from case workers. We know that things break down and emergencies arise from time to time unless there is professional assistance and this can be very costly.

If we turn ownership over to a not for profit housing provider, it generally wouldn't pay property tax or income tax on the property. That means it doesn't have to charge a high rent as we would have to do to cover taxes, mortgage and insurance costs. Our class of tenants have small incomes and can't pay rents of more than $400 or $500. The provider company conventionally makes repairs and provides at least minimal case management. But our group of parents couldn't agree on employing a housing provider and so we fell apart on this question as well as our children's incompatibility to live together.

We also failed to see how difficult it is for two or more of us to go in together to buy a house. With multiple owners there are bound to be disagreements about paying the bills and sharing the load. We wondered what we would do if one or two owners backed out of paying the mortgage or making lease payments, leaving someone else holding the bag. We really would have to own the property singly and that would exempt the others from having a voice in how it is used. We'd end up taking care of our own child at the expense of any other people in line for the housing plan with our design.

Meanwhile, house prices kept rising, reducing our options. Why not sell the house on the private market and use the proceeds to buy a condo or lease an apartment for our disabled son or daughter? With a special needs trust, the assets of the sale are safely invested for the disabled child for his lifetime and we can feel secure. But if we are to do so, we haven't helped solve the housing crisis for any of his comrades. We haven't lived up to the pledge of making this work out together, as families who cherish our children, know their vulnerability and fear they may become homeless in an uncertain future. The government can't be trusted to find enough housing for all those with severe mental illness. We hoped to copy the example of parents who joined hands to open homes for their mentally retarded children years ago.

But our children are significantly different. They won't agree to live where we want them to. They pick their own friends and roommates. We've had to realize the simple prospect of leaving our housing to our own kind won't even work if the child doesn't want to live there. And combining our effort with that of our friends makes the enterprise even less workable. We'd have to devote too much time and money and we're not meant to be business partners or know how to keep up a house. It's discouraging to realize we've failed. (Roy Neville)