A bit shorter today – Wednesdays are always busy for me!
In the blogs:
if it wasn’t so necessary, the whole thing would be impossible
# all of us are learning about our own disabilities and each others
# hard to figure out who our allies are. in nonprofit industrial complex, when we make a decision that isn’t popular with allies (like using the word “disabled” as a political word of power in our name), we don’t just lose support, ageist and ableist tactics are used to try and take our power
# this is honestly first time a lot of us have been asked: what do you want? what do you see for yourself & yr community?
In the news:
And here comes the dirty little secret of the so-called juvenile justice system. If you have a seriously mentally ill kid, and you can’t afford treatment, you can have your kid hauled before a judge. And if the judge is particularly empathetic, he or she has the power to get services for your kid.
As long as you’re willing to give up custody of your child to the state of Arizona.
[I find this especially troubling in light of the Hyde case here in Nova Scotia.]
Campaigns:
Follow ADAPT’s twitter feed as they protest for inclusion in health care reform, housing, and the American Dream. [US] Ms CripChick’s got a report.
Dont Write Me Off [UK]:
There are hundreds of thousands of adults with autism in the UK, all of whom have the right to lead a dignified and fulfilling life. Sadly, the majority of people with autism are not getting the support they need to find a job, and many more cannot access the benefits they need to live on.
The research that we carried out among adults with autism showed some worrying statistics. Among the people we contacted, we found that:
– one third are currently without work or benefits
– over half have spent some time without work or benefits, some for as long as 10 years
– just 15% have a full-time job
– but 79% of those on Incapacity Benefit told us that they want to work.Through this campaign The National Autistic Society is calling on the Government to make the system fair for adults with autism, so that it takes their needs into account at every step.
October is National Disability Awareness Month [US]
“Expectation + Opportunity = Full Participation” is the 2009 theme for National Disability Employment Awareness Month (NDEAM). Sponsored by the Office of Disability Employment Policy, NDEAM highlights the contribution of American workers with disabilities as well as increases awareness of their challenges.
The childhood mental illness one really hit home for me. We fought the systems for years, trying to get help for my son from age 11 on. We had decent insurance, but also had to pay out of pocket for some of his hospitalizations. He was in out nine times with a ridiculous number of diagnoses and medication changes. Finally the local children’s hospital refused to take him any more. They said that he was just trying to escape from life. The county advocates that we’d been dealing with told us that basically our only option was to give up custody of our son to the state.
The next time we had to call the police, they took him to juvenile detention, rather than the hospital. They said that there was nothing else that they could do. My barely 13 year-old son spent a week an a half in there, scared to death of everyone around him. They finally released him on a deferred sentence for domestic violence, with a year’s probation.
Actually, those officers were wrong. They could have done something else, as we found out when we had to call the police again. While my son was pleading to not have to go back to jail or break his probation, the cop told us that 13 was the age of consent for mental health care in Washington State (USA). This meant that he could be involuntarily committed. The officer said that it might only be for the emergency 72 hours, but that would help us get him some help.
If I prayed, I would be remembering that officer in my prayers daily. My son was committed for 72 hours, then two weeks, then a month, then six months. As long as we applied for medical assistance, the state fully covered his stay. This also put him on the short list for Washington’s Children’s Long-term Inpatient Program (CLIP), which he ended up being in for year. There they finally diagnosed him fully as “just” depression and complex PTSD from abuse by his father (my Ex), not all the other crap that had been thrown at him.
Now, he’s a healthy, relatively happy 16 year-old. He still has anxiety, he still has PTSD, and he’s on one psych med. However, he’s getting on with his life and has HOPE again.
His mother is now a mental health activist and considering becoming a peer counselor. No one should have to go through this.
dreamingcrow – what a heartbreaking story. thanks for sharing it here. i’m so glad to hear that your son was finally able to get the care he needed and deserved and am very happy that he’s doing well. take care –
You know, that’s the third story I’ve heard in the last year about the massive lack of effective mental health treatment for children in the US, or even medical knowledge about children’s mental health overall. dreamingcrow’s story makes four (though I am so glad that your son is doing well). Clearly there’s a need, but the research is not being done, the studies are not happening…
I know it’s a difficult situation, particularly because children have developing brain chemistry, but how many more kids are going to have to go through pain before our society can find solutions?
Bene: It’s a system full of fail. The adult system is buggered and the children’s system is all that, plus lack of actual science behind how all of this affects kids differently.
In my own personal experience and observations, what’s needed is effective support for children and families before the situation gets so bad that involuntary commitment and/or revocation of parental rights are the only things left. To get that, though, we have to admit that children can be mentally ill and that brushing it off doesn’t fix things.
That story about autism honestly terrifies me – particularly the bit about how many unemployed autistic people aren’t on benefits or have spent time without them. Because I can see how it can happen, and it’s awful.
Bureaucracy is not structured in a way that is good for autistic people. To me, it seems as if most NT people who do this stuff wind up plucking information (what certain questions mean, where to get the forms, what needs to be handed in where, what it’s even *possible* to apply for) from thin air. I needed help every step of the way to even get an appointment to be /assessed for diagnosis/, because alone I would have had no idea where to even begin. And I was living in what is probably the best place in the entire UK when it comes to arranging such a thing. Knowing what I do about bureaucracy, I would be completely incapable of doing such a complex thing as applying for benefits by myself. And I don’t think I’m particularly unusual here.
So, yeah, there *has* to be some change here. I suspect a fundamental revamp of how the system works is too much to ask for, but… something like a website/booklet/etc. specifically designed for autistic people giving various governmental services and a step-by-step guide to applying for each of them, as well as what to do if a step breaks down, plus a guide for every form that explains each question and what your answer is supposed to look like clearly, and an employee specifically in charge of helping autistic people access services they are eligible for…
Hey, I can dream, can’t I?
.-= Kaz´s last blog ..On talking vs. silence and currently-abledness =-.
I recently came to the realization that young me could have fallen into that category; I was first diagnosed with OCD at 12-nearly-13, although I wasn’t to the point of physically harming myself and/or others. I was put on a combination of therapy and Prozac, which fortunately worked well…but it wasn’t until I was an adult that the information came out about how SSRIs increase suicide risks in children and teenagers. Terrifying in retrospect, though I like and respect my psychiatrist very much, and I don’t hold him accountable for the risk…the data simply was not there in 1996.
The point of my personal anecdote is that it really brings home to me how medical science is lacking when it comes to psychiatric treatment for children, that without knowing it, my family and I, and my psychiatrist, ran the gauntlet and fortunately emerged safely…and thirteen years later, there’s still not anything effectual to be had without these risks.
dreamingcrow, I’m sorry that you and your son had to go through so much before your son was able to receive help. I think every state should have the Medicaid waiver for any child/teen with that kind of diagnosis w/o having to go through the involuntary commitment or juvenile justice. My own son has bipolar disorder, and began showing symptoms at age 11 and had to be hospitalized. I’m not too thrilled with the state of inpatient care for children here, but fortunately his individual psychiatrist has been great. We’re lucky in that the psychiatrist recognized his symptoms quickly. I’ve known kids to go years and years before accurate diagnosis. We also qualified for Medicaid, so we were able to access things like in-home intensive therapy, partial hospitalization programs, and therapeutic after-school programs which, frankly, I think kept him out of residential placement. I just wish that there were more long-term type programs available here. There’s a whole lot of problems with the way mental health services work in this country, especially for kids.