The Principles of Supported Living

 

by Jay Klein
excerpted from Not Just Another “Rung” on the Continuum, TASH Newsletter, 1994.

Individualization Webster’s dictionary defines “individual” as a particular being or thing as distinguished from a class, species or collection, as single human being as contrasted with a social group or institution, as a single organism, as distinguished from a group, and as an indivisible entity. Therefore, if we say supportive living is ‘”individual,” it must be something that is for one person without exception. This does not mean that everyone has to live alone. What it does mean is that if people want to live with someone else, they choose with whom they live. The magic number becomes one. When people get to be adults in our society they choose to live with others who are close friends, are relatives, or with whom they are romantically involved. Usually living with a close friend lasts longer than living with a relative. Unfortunately, in our country we have only a 50 percent chance of continuing to live with the first person we are romantically involved with. It makes sense that people with disabilities also prefer to have these same choices instead of being congregated or segregated based on their disability. Some people with disabilities need intensive assistance to carry out their everyday tasks. In these situations, people may choose to live with someone who can assist them or may have their assistance provided on a regular schedule or on an on-all basis.

Everybody is ready There are no criteria to receive the support being described. Since what occurs is individually designed, there are no prerequisites. We must give up trying to make people ready by simulating how it is to live in a home and begin supporting people to have that home. If people cannot do something, then we can find someone to do it for them rather than requiring them to learn to do it before they will be ready. There is nothing magical about any program, or building. What can be magical is what the program, building, and the people who “hang out” there offer. Our challenge in supportive living is to create this “magic” in the person’s home.

Future planning It is crucial to those people who are assisting others to find a home and to access needed supports to get to know these individuals, their desires and preferences, the people in their lives who care about them, and what an ideal living situation would look like for each of these people. Once this information is gathered, the people who care about the person get together regularly to develop a plan for getting as close as possible to the ideal living situation.

Use of connections Our traditional residential services relied predominantly on system solutions to concerns and problems. By relying only on system solutions a whole wealth of potential resources is ignored. One of the components of supportive living is eliciting the assistance of all who want to and can help. Therefore, people who care about the individual along with the individual should continually ask, “Who do we know who can help?” “Who do we know who will help us think about it?” and “Who will ask for their assistance?”

Flexible supports Support is based on the individual’s schedule and needs, not on a program’s. Individuals receive support where, when, how, and with whom it is needed. Any support given must be flexible enough to be adjusted based on the individual’s changing needs, preferences, and desires.

Combining natural supports, learning, and technology Whenever possible, supports which are natural to the place, time, delivery, and person are sought. The designing of individual supports takes into consideration opportunities for individuals to learn to provide their own support, for it to be more natural, and to use technology which may give the person more control.

Focusing on what people can do Traditional residential programs focused predominantly on what people could not do and tried to offer a treatment plan designed to teach people how to do what they could not do. Supportive living focuses on what people can do, provides support for things people cannot do, and provides opportunities for them to learn how to do the things they want to do.

Using language that is natural to the setting Supportive living includes language that is natural and promotes inclusion. Thus, places people live are described as Joe’s home, or Mary’s home; people clean their home and do their laundry rather than learn programs; people live with roommates, not with staff or providers; friends come over to visit, not volunteers; and people are referred to as neighbors, friends and citizens, rather than clients, consumers, and residents. As we begin to give up talking about “them”, “those people”, and “they”, our language becomes more inclusive and guides our actions.

Ownership and control Lastly and most importantly, the home is the person’s and that person controls the support that is received Home ownership does not mean that most individuals with disabilities who do not have many financial resources will hold the mortgage to a home. It does mean, however, that they sign the lease, things in the home belong to them, and the place is their home. In addition, roommates sub-let from the person, support people are hired by the person, and support people respond to the need for assistance when, where, and how it is needed.

In summary, supportive living is not a model, the answer, or some new magic. It is, however, a way of viewing people and assisting them in ways that enable these individuals to receive the support they need and to live in a home they want. When asked about what model they were using in North Dakota for 598 people who receive funding under a category called supportive living, Russ Pitsley said, “We have 598 models. ”

In order for us to promote this shift toward supportive living, we must remember where we came from, recognize some of our recent responses, and make that paradigm shift everyone is talking about. This will require us to do things much differently than we did in the past. We cannot add another “rung” on the continuum. We will need to focus our efforts on assisting people to receive the supports they need to live beside us in places they can call their homes.

At the time of this publication, the author, Jay Klein was affiliated with The Institute on Disability, University of New Hampshire.