Excerpted from Patterns of Supported Living: A Resource Catalogue
Today’s service systems developed around the unspoken assumption that people could not have both severe disabilities and homes of their own. — John O’Brien (1991)
A primary value underlying supported living is supporting a person who controls — through ownership or lease — the place in which he or she lives. Traditionally, nearly every person with severe disabilities has had two options: (1) remain with their family; or (2) live in a licensed place owned and controlled by others.
Living in one’s own home is more than having one’s name on title to property, or on a lease agreement with a landlord. John O’Brien observes three dimensions in the idea: ˜ a sense of place (for example, security and comfort; ability to invite in guests) ˜ control (for example, live alone, or choice or housemate) ˜ Security of place (equity position or tenancy).
In comparison with licensed places to live, control of your own place through ownership or lease should bring (a) greater personal control of space and time (what you do every day); (b) more involvement in the activities of daily living (shopping, cooking, laundry); (c) a sense that I belong here; and, (d) more control of the threshold (who can enter, and who must leave) which, in turn, gives people the opportunity to invite guests into the home without getting permission from a service provider. Choice can be an illusion, however, if the items in the Control column above are not respected. All too frequently, for reasons of tradition or convenience, paid service providers give lip-service to choice of place to live, and choice of people to live with.
The Ups and Downs of Owning or Renting
Licensed homes are typically owned (and controlled, by public regulation) by the people who provide services, or who hire others to provide services. Those who live there are considered invited guests, and they may be asked to leave for any number of reasons, such as retirement of the service provider, personal illness, behavior that is problematic for others, or a professionally-determined decision that the person needs a different type or level of care. Some board-and-care homes are bought and sold like any other businesses — and paying guests are sometimes considered as working capital in such transactions. So long as the buyer wants to continue services, the guests may be invited to stay on. While this is not an ethical or legal thing to do, it does happen!
Can a person with disabilities assume greater stability and control if they own their own place? The answer may appear obvious, but it may be wrong. As noted at a recent housing and supported living workshop, a bank is often able to foreclose on a mortgage faster than a landlord can evict a tenant. With ownership of a property comes a host of responsibilities, such as paying the mortgage and taxes, getting insurance, finding others to live with if the house is otherwise unaffordable, keeping the house in good repair, and getting support services (if needed). And, if the person must rely on SSI (Supplementary Security Income) to meet basic living expenses, ownership can be problematic in yet another way. While the home in which an SSI recipient resides is not a “countable resource,” subject to the $2,000 limit ($3,000 for a couple), if the person chooses to live elsewhere — or, is forced to live elsewhere — he or she only has three months to sell the property and to reinvest the proceeds into another owner-occupied dwelling. This may be impossible, for example, if the person has to move somewhere (for example, to a nursing home) to get needed health-care services. All of these matters can be problematic, especially if the person does not have a family member, friend, or advocate willing and able to help.
What about renting? For some people, renting may be preferable to owning. Renting typically carries fewer responsibilities than ownership, such as taking care of landscaping and household maintenance. Furthermore, if the property is a multi-unit complex — and if the local unit of government would not approve conversion to condominium status — in all likelihood the property will not be turned to some other use. (The same can not be said, for instance, of rented single-family dwellings.)
Living with others — What about breaking up?
People frequently assume that the ideal for an adult with a developmental disability is to live alone in his or her own apartment. The reasons for this assumption are not altogether clear. Some feel that a full test of one’s emerging ability to be independent implies making it while living alone. Housing may also be the issue, since few housing authorities provide housing subsidies to unrelated individuals living together. Finally, there may be less hassle in working with someone who doesn’t have to face the difficulties of living with others (for example, compatibility issues, spats and so on). The important thing to remember is that this is just an assumption until we find out first-hand where and how someone wants to live. Remember that where and how someone wants to live will change over time and that people should be supported in their decisions.
When two or more people live together, married or not, there is always a need to get along well. If people don’t get along, a split-up (or divorce) is usually in the cards. How does this relate to supported living? It is related in two important ways. First, understanding individuals is crucial. Some persons needing support want to live with others, and this desire should be respected. The next question is who would you like to live with? The answer should guide the exploration of the possibilities. While pursuing shared housing with adults without disabilities, two of the authors interviewed a young man with cerebral palsy, living in a group home, who wanted to leave and live on his own. When asked about his preferences, he said that he wanted a three-bedroom house, accessible (because he uses a wheelchair much of the time), with room for a garden in the yard, no more than a mile from the community college campus, and he wanted to live with two other guys with cerebral palsy. Should these hopes and dreams be respected? You bet! The task was to network with others in hopes of finding two other young men with cerebral palsy who would like to live together.
Can you minimize squabbles among housemates? When difficulties arise, and a divorce is likely, how can someone intervene? There are interpersonal techniques for resolving issues and building positive, constructive relationships. Fundamentally, the skills of open and honest communication, team-building, facilitation, negotiation, and dispute resolution are useful. Some of these skills are well-developed in persons who have worked with various groups around shared housing — particularly with senior citizens and other special groups (for example, single parents, or adults in recovery). Problem-solving house meetings, reaching consensus on house rules, dividing up responsibilities for utility payments, and allocating chore responsibilities based on preferences and aversions are good places to begin.
Even with good planning, artful collaborative team-building, and other efforts, some individuals are likely to bother others. What then? Sometimes, the matter is one of tolerance, as when a housemate insists on ‘borrowing soft drinks’ without asking. Brainstorming with everyone who lives in the house and a circle of support may bring about solutions to vexing problems.
Housing controlled by a person’s agent
An agent (like a friend, advocate or a parent) may play a key role in handling the housing of some individuals with significant disabilities. Some do a stellar job — being responsive to the needs, hopes, and preferences of the person, while encouraging self-direction. Others do an okay job, not wholly respectful of the needs and wishes of the person supported, but they have the ‘right idea’ about support, self-reliance, and learning. And, frankly, some agents could do a much better job. Of course, there are realities to contend with — as when someone can’t get along with others (even with considerable support) but indicates a desire to live with others. And, if there is a falling out, who should stay and who should leave? What about pressure from people who may want a person to ‘fail,’ so that he or she can be placed into a group home to receive more care and supervision? These are the kinds of issues that confront agents, as they seek to do the right things for the person they represent.
Locating a Home
People receiving supportive living services should have the same housing options available to people without disabilities. Their range of options should include apartments, condominiums, houses, cooperatives, or mobile homes. They may need assistance deciding which kind of home they want because their experience may be limited.
When locating a home with someone, it helps to first choose a neighborhood they would like to live in. Some people choose to live near family, jobs, people they like, or particular places or resources. Easy access to places someone goes to on a frequent basis is often a criteria when looking for a place to live.
Excerpted from Patterns of Supported Living: A Resource Catalogue; Developed for the California Department of Developmental Services by Allen, Shea & Associates and Claudia Bolton Forrest, 1780 Third Street, Napa, CA 94559, (707) 258-1326, 6/93.