by Derrick Dufresne, CRA cra@aol.com
Please read article, a must read for all families
not to measure the number of times the person got out of bed in the morning, but why get up at all?"
Ultimately one of the things that separate us from lower forms of life is that humans seek meaning. For too long we have neglected this important truth and instead focused on an activity, a need, or a program. If we are really interested in quality, we must look to measure different things to get different outcomes.
First and foremost, it is important not to confuse quality and compliance. Systems determine compliance - people determine quality. Many years ago Michael Smull taught us true quality can only be measured by that which is important "to" someone other than that which is important "for" someone. This changes the nature of the discussion.
Systems are capable of compliance assurance, not quality assurance. Health and safety (now considered one word) have often been used as a reason to limit liability or to focus on a minimal set of expectations for the individual. This lowers rather than raises the bar. It is about time that we raised rather than lowered expectations if we truly are about helping people get a life.
The new barometer of quality is not about systems, but about people. We no longer measure community presence, but value community participation. We are no longer impressed when people are in the community, but value people being of it. We no longer value people being clients of programs, but being citizens of their community.
What an exciting change! This new reality in no way diminishes the importance of staff or agencies. It simply changes what we measure as success. We now measure not the program's success, but the individual’s success. We no longer measure how visible staff are in people's lives, but how visible friends, connections, and community participation are in someone's life.
Staff become invisible supports - there to nurture, to build bridges and foster connectors. Most importantly, I am now totally convinced that many people with disabilities will not get a life without us. At the same time, we need to make certain that we are not the person’s life.
Finally, personal outcomes are incredibly important and must be utilized as a benchmark to indicate the first layer of quality that we measure. However, this is a necessary, but not sufficient, condition for true quality. Neither is choice any longer to be considered an icon or an absolute measure of quality. Maybe it is indeed about freedom and contribution. If we truly are seeking to have people be full citizens of the community, then we need to change the nature of the discussion
It is not just that it is better for people with disabilities to be in the community. It is also better for our communities that people with disabilities are there - side-by-side at our churches, schools and community events and truly part of, not just in the community. To truly value personal outcomes we must also promote community contribution. As citizens we have a responsibility, not only to ourselves but also to those who make up our broader community. We must all have the opportunity to contribute to the betterment of the communities in which we live and work.
To deny people with disabilities the same opportunity is to focus on clienthood rather than citizenship. If we truly believe that all people have gifts, then everyone must be allowed to make a contribution.
It is truly time to raise the bar. The people we support deserve no less.
-Written for Hammer Discoveries, Issue 85/Spring 2010, p. 1
Hammer Residences, Inc.
Wayzata, MN
