Thursday, September 05, 2013


I did my first self advocacy as soon as I left my mother’s womb.  I squalled to let the world know I was here and had needs independent of my mother.  At 64 I am still at it, trying to advocate for my rights and independence as an individual.  At the same time, I fully recognize my interdependence with my wife, other humans, nature and dimensions I don’t even pretend to understand.

I did my first advocacy on behalf of myself and others while working in a shop that retreaded tires.  The working conditions were poor and the pay was worse.  It was my personal introduction to trying to get people to stick together for a common good.  I failed.  I guess I should have been more aware of the difficulties because I grew up in the home of a school principal and minister who then became a missionary to Zimbabwe, Africa.  Watching churches, church boards, school boards, parents at school meetings and mission boards should have prepared me, but I thought I could do what my father had been unable to do.

I started advocating in the mental health arena in 1988.  I was hoping to help myself and my fellow sojourners.  I soon learned that advocates eat their own.  I had never been in a more competitive environment.  Other consumers of mental health services, mental health professionals, family members and others who had vested interests would defend their turf with everything they had.  I remember being appointed to a board in south Florida, but before the chair would let me take my seat I had to go through an interview to make sure I was well enough to take my seat and would behave during the meetings. 

I find my hope dying day by day.  I am not losing hope about the possibility of recovery.  Although, I don’t think that recovery should be defined as being able to participate in community employment as some program models use as one of the criteria.  It is a wonderful thing to be economically independent and I wish it for everyone and not just folks with a label. 

I am losing hope that we will ever be heard by the decision makers. They pretend to listen.  Lip service is given to what is called person-centered services.  I receive some of those person-centered services.  I have family members who receive some of those person-centered services.  I talk to others who receive those person-centered services.   However, the truth is few of the services delivered by any mental health provider are person-centered.  The services are provided to meet the requirements of the entity the provider is going to bill and not necessarily the hopes, dreams or desires of the person served. 

North Carolina has an ACT Technical Assistance Center.  The website first statement is the following. “The  Center's new program will help North Carolina respond to its recent settlement with the U.S. Department of Justice (DOJ), by developing and implementing an overall plan for using multidisciplinary ACT teams throughout the state. Specifically, the DOJ settlement requires that Individuals with severe mental illness have access to ACT teams that are following a nationally recognized model.” 

Why were ACT teams the model picked?  Is the Assertive Community Treatment (ACT) Team model even a person-centered model?  The following comes from as the definition of assertive.
1. confidently aggressive or self-assured; positive: aggressive; dogmatic: He is too assertive as a salesman.

The Assertive Community Treatment Association has under Principles of ACT on its website the following statements.

“ACT team members are pro-active with clients, assisting them to participate in and continue treatment, live independently, and recover from disability.
The team encourages all clients to participate in community employment and provides many vocational rehabilitation services directly.”

I am not sure ACT Teams can follow the model and be person-centered.  I think they already start out with goals and expectations for people they serve without asking the people anything about their dreams, hopes or expectations of the services they are about to receive.  I am not alone in this assertion.  The team decides a person will participate in treatment, live independently, be employed and recover.  Why ask the person anything?  So they with aggressive confidence and dogmatic opinions about the person’s goals assert their will and call it treatment.  It is treatment of some sort, but is it person-centered treatment?

When people in south Florida would ask me what kind of program I thought worked best, I would answer without any hesitation with Patty.  They knew I was talking about my wife.  Everyone can’t have a Patty.  I know that, but we need to take natural supports more seriously.  I am not talking about peer support.  I am not talking about family support.  I am not talking about support from the mental health system.  I am talking about learning how to build a support system that is not built on a person’s disability, but rather on their abilities, interests, dreams and spirituality.  If you know of a good resource for natural supports talking about how to help people build them around those things please email me at

No comments:

Post a Comment