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.
Introduction