One of the central questions in implementing CSLA was whether or not supported living could successfully move beyond the pioneers. A small group of pioneering agencies had shown that people with disabilities could have lives of their own choosing regardless of severity of their disability. These agencies are committed to supporting people in the lives that the people have chosen for themselves and share a passion to make it happen that allows them to overcome whatever obstacles they find. Their strong internal values has made supported living work regardless of the regulatory or funding environment. With the advent of CSLA, supported living became a "program" and it became "trendy". The question in the minds of many of those involved in supported living was whether or not the people with disabilities supported by the new programs would get the lives that they wanted.

Life is not a program
The answer seems to be yes and no. CSLA has demonstrated that you can move beyond the pioneers. In all of the CSLA states, people with disabilities have lives that they perceive as better. Many new supported living agencies (and many of the older agencies who added supported living) were doing as well as some of the pioneering agencies. Even where reviewers found agencies that talked a better game than they practiced, the people supported reported that their lives were better than they had been in the settings that they had left behind. However, for too many people there was a significant disparity between what could be done and what was happening. The issues were in three areas: first there were agencies that saw supported living as just another program; second were the agencies that simplified supported living to supporting choice; and third were the agencies that were supporting people well at home but had no impact on what happened during the day. The unifying issue among these agencies is that life is not a program. Agencies that want to be trendy can offer a supported living program can meet program standards without the people they support having real control over how they live. Agencies that offer support without recognizing the need to help people achieve a balance in their lives can support choice without regard for issues of safety. Finally there were the agencies trapped by the structure of the system. They supported people who had effective control over who they lived with, where they lived and what they did at home. These same people often left home to go to a workshop they disliked or a job they had not chosen and could not change.

The people supported Joe is a bright, articulate man who moved from a group home to an apartment in an accessible HUD funded apartment house. He attends college during the day and talks of his career goals easily. Because of his cerebral palsy he uses a wheel chair and needs personal assistance to transfer or dress. Joe is supported by an agency that uses the language of support with great facility and talks of how the people supported have control over the supports that they receive. Joe clearly states how life in his apartment is better than the group home, but the control that he has falls far short of the control that agency managers describe. A recent example is the staff person he still misses (who provided some and coordinated all of his personal assistance) who was transferred to supporting other people for agency convenience.

"Sally" is a support coordinator within a supported living agency who tells how she always supports people in their choices and how the agency strongly endorses a zero discharge policy. She told one reviewer of an individual that the agency will support again as soon as she gets out of jail. It seems that "Susan" has a habit of shop lifting and of getting caught while doing it. However, it is her "choice" and jail is the "natural consequence". Alternative ways of supporting Susan had not been fully explored and endorsing choice was seen as sufficient.

"Annie" is a charming women who loves living away from Mom. She says she is an adult who doesn't need "my mom telling me what to do and when to do it." Mom is reported to be equally pleased with Anne's independence. What Annie is distressed about is that she does not have a job and is not likely to get the job she wants. She is afraid that she will get another job at the local convenience store. Annie says that she would like to work in a mall stocking things and being able to stay inside. The agency job coach "is trying to find me a job, but it isn't a job that I want." The people who support Annie at home know how she wants to live and have assisted her in getting having a significant part of the life that she wants. They say that it would easy to find her the job that she wants. However, she needs support on the job and they are not funded to provide job coaching services.

A supported life is achievable and affordable We have a system of programs where supported living can be seen as just another program, where process is valued over outcomes. We need a system that: looks at complete lives and begins with how people want to live; requires valued based outcomes which include a reasonable balance between choice and safety; and requires that people be funded rather than programs. There are numerous examples of agencies that have demonstrated that we can have a system that supports individual choice and control, which provides reasonable protections, and is affordable.

Michael Smull can be reached at:
Support Development Associates
4208 Knowles
Kensington, MD 20895
(301) 564-9572 or (fax) 564-6657
E-Mail: mwsmull@compuserve.com