PERSONAL ADVOCACY

First, let me apologize for not getting a blog out this past Monday. I have not been feeling well, but I still should have gotten the job done. I feel a responsibility to write and post this blog twice a week (Mondays & Thursdays) because some of my readers have written and expressed that it is meaningful to them. It also gives meaning to my life because it brings more purpose to it. So again let me say to those of you who I let down that I am sorry. Now on to the subject.
There are as many definitions of advocacy as there are advocates. I am going to try in this blog to tell you some of my thoughts on the subject. As I have written in this blog before my first efforts at advocacy for persons like me with a mental illness was with the Christian community. Having grown up as a minister’s and missionaries’ kid I went to the people I knew best to ask them to reach out to those of us with a mental illness. My efforts were not all that rewarding. Yes, I became the National Co-Chair of the Religious Outreach Network for NAMI (which NAMI later disbanded) and had some other successes like getting articles in religious publications, but overall the church was not all that responsive.
My next move was in 1989 to help form Novastar Opportunities for the Mentally Ill, Inc. which Project Dream Again is a division of. It was formed here in NC and is now back in NC, but for most of its working life it was in Florida. I am President of Novastar which is a small nonprofit funded by the sale of my book, folks personal gifts to it, speaking on the rare occasion I accept payment, and from my wife’s and my own funds. I am telling you this not to brag, but rather to make the point that Novastar nor Project Dream Again has ever taken any federal, state, county, or city funds. It has run a drop-in center on the grounds of South Florida State Hospital without any public money, and it also helped get two consumer run drop-in centers state funded in Broward County, FL.
My wife, Patty, left Project Dream Again (Novastar) and went to work first for Broward County on a team working with people in the state hospital then she went to work for the Advocacy Center as monitor for the lawsuit because of the conditions at South Florida State Hospital. She later became the Director PAIMI (Protection and Advocacy for Individuals with Mentally Illness) for the state of Florida. I love my wife, but I am not fond of the PAIMI across the country. Why? Because IT MATTERS WHO FUNDS YOU.
That is why I made the point I did about Novastar and where it gets the little money it has to run on. My grandfather use to ask me, “Have you ever heard of a preacher saying he felt God was leading him or calling him to go to a smaller church with less pay?” Folks, there are always strings. The only way to have an independent consumer voice is to build a grassroots organization independent from the power structure financed by our own pennies.
Let me talk straight for a minute. Since coming back to this state, I have offered to work with NAMI-NC whose board I served on in the late 80’s, but they don’t seem to need any help. I offered my help to the new Advocacy Center in this state, but they don’t seem to need any help either. In fact, they don’t even answer my letters. Neither the Department nor the local LME (local funding source for those of you out of NC) answer letters. To find out that North Carolina feels like a deep freeze to consumer input is a shock to me. My delusional thinking was that North Carolina would be far ahead of Florida in accepting us as part of the decision making process, but the fact is the Sunshine state shines on this issue.
If you think I am taking it personally, you are wrong. I can look at the system and tell no one has been listening to us. I can read the Person-Centered Manual and know and tell no one is listening to us. This isn’t about the fact that Ed isn’t being heard. This is about the fact that the consumer being served is not being listened to. A consumer driven system does not look like the one you are looking at in North Carolina. It is that simple.
You can reach me directly at edcooper@projectdreamagain.com
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www.mentalhealthministries.net
www.pathways2promise.org
www.faithnet.nami.org
www.annafoundation.org
www.ncmentalhope.org