Mmmk, I think I'll get a head start on the next edition of the Disability Blog Carnival, which will be hosted over at Pedestrian Hostile on the 27th of this month. (*quirks a brow* Interesting name, that...) She chose Simply the Best for the theme of her edition, and when I saw that my mind instantly pulled up the lyrics for one of the James Bond theme songs. Nobody Does It Better, by Carly Simon. But somehow, as this is supposed to be disability-related, I don't think that's what our hostess had in mind. So, I will go with the next thought I had. Guardianship.

I am a member of my state's Council On Developmental Disabilities. For the past year, since I was appointed by our governor to be on the Council, our Consumer Leadership Caucus--a group of self advocates, along with a Council staff member--have studied this issue with the purpose of proposing a position statement on it to the whole Council. We are still learning about guardianship and are not yet ready to have the Public Policy Committee draft the statement, but we have learned much. The past meeting (in July) is where I gained much of my (current) understanding of the issue. Our staff member presented her project or thesis, which of course, was on the topic of interest. She'd interviewed several self advocates--individuals with disabilities--and a few parents. Some had decided against getting guardianship of their adult children, while other parents had thought it best for their son or daughter.

Hearing about the interviews was an eye opener for me. Up until this presentation this past summer, I was of the mind that guardianship was not the answer once a disabled child turned 18. There are other options out there that many parents don't know about that may meet the needs of those involved better than guardianship. Like just having a conservator--someone who manages money for a self advocate. Or limited guardianship--this could be for a limited time or limited to certain types of decisions, like medical. A person may be able to make competent decisions in other areas of his/her life, but when it comes to being responsible for taking and keeping track of prescriptions, he/she needs help. This way, the person still has control over his/her own life, still has the liberty to make his/her own choices and has the help he/she needs when it comes to medical decisions and needs.

And I've heard horror stories about self advocates who've become wards of either a family member or someone appointed by the court. Once full guardianship is granted, the ward has lost all legal say in the decisions made that will affect his/her life. They can't do anything unless the guardian says so. One ward could not attend the church of his choice or live where he wanted because the guardian said no. Another guardian denied his/her ward the right to see her family. Even prevented her from speaking to them, and it wasn't for protection reasons. The guardian just didn't want the ward to see her family. Another bad example of guardianship was an interview the staff member had with a self advocate I know personally. When he was 15, he was committed for a time to the hospital for mental illness. When he was released, a lawyer who'd been appointed on his behalf, told him his parents were petitioning for guardianship and there was nothing the self advocate could do. He had no choice. And once in court, the judge never once looked his way or asked him if he agreed or disagreed with or understood what was happening. It was all over in 15 minutes. Now in his 20s, this guy wishes his parents had discussed the life-altering decision with him. Because he has no say in what happens to him now. At the time his parents thought they were doing the best thing for all concerned. Unfortunately, it was not.

But a couple of other interviews (with a father and son) changed my mind. I still don't think guardianship is the end-all answer, but for some families and disabled people it is the best. But even then, the situation is dependent upon how the disabled child is treated once guardianship is obtained. In the case of this family, they discussed the pros and cons and asked for the particular son's opinion. They'd researched all the options, in addition to guardianship, so they were well-informed. Every member of this family--including the son--felt this was the best thing for their disabled loved one. And the parents talk over every decision with the son before making anything final. Guardianship in this instance is truly the best option.

As I've said, what's simply the best is just dependent on the situation and the people involved.

moon phase