Advocacy for those with more complex care needs

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First, a little background: I am autistic and live in an institution. I have lived in one since 2007, when I failed at independent living due to a psychiatric crisis. In addition to autistic, I am blind and have mental health problems. I need 24-hour care, which in my case means that I can be alone in my room with something to do for an hour or two at a time, but always need someone close by. I need assistance with most day activities, recreation, housekeeping activities (most of them need to be done for me) and occasionally personal care. I can't leave the ward without assistance. I have meltdowns in which I can become aggressive. Recently, I was turned down for something called a workhome, which is basically an institution for autistics of average intelligence but with complex care needs. There was too little staffing.

Now, I feel left out here on WP sometimes because most of the people here are more independent than I am, and the advocacy done here seems to portray autistics as oh-so-capable-and-independent adults. It may seem that I don't know, but I left WP in 2009 for this reason. Now I want to start a thread on how to advocate for people with more complex needs. Examples other than myself include a man who, in 2008, was put in seclusion for six months because he couldn't cope at a workhome, and a woman who, in 2009, was transferred to a locked ward because the workhome she was watiing for didn't have a place. These are Dutch examples, but I'm sure there are American examples, too. We often hear about those on "autism reality" blogs (I read Harold Doherty's blog for this reason). Now I think advocacy shouldn't be about how oh-so-capable we are, but about all autistics getting the care they need in the environment they want. So let's toss out ideas on how to advocate for this here.

By the way, no offense meant to any specific WP'ers or WP in general. My post probably comes across harsher than it was meant.

First I have to say you are very brave for saying this and hugz. I really hope you get the help you need and that the voice of those most afflicted and struggling with autism are not continuously drowned out in these chats/forums let alone real life. I also have seen where the more expressed if you will autistic people are sort of brushed aside in the chats and forums.....as they are in real life. The truth is taht the few of us who were really late talkers (and I'm nowhere near afflicted to say my aunt who is in a special needs home) generally are not proud of it irl bc we generally were not and have not been treated well from having it. Just as in society, people like to brush the "problems" or "inconvenient truths" about others whose disabilities are expressed as the real definition of a disability...ie serious life limiting effects from said disability....under the rug while idolizing normal average people who label themselves as quirky are "cool", we see that in this chat. I personally have been banned for bringing this point up in chats because some of the (not all mind you) NT oriented "cool" aspies who operate it do not want to address some inconvenient truth, perhaps about themselves, that they apparently feel threatened by. They want to send a message of how "cool" autism is because it's just a selling point for them and they really haven't experienced the disability. Well I for one can say it is not just "cool". All 3 people in my family who were late talkers all were diagnosed with autoimmune diseases at some point in their life and 1 was put in a wheelchair in addition to enduring horrific treatments like electroshock therapy. So the amount of time they are even able to apply to things they love/enjoy is very limited ON top of their disability. My autoimmune disease is fortunately still at the cusp although the ANA levels are very high and it's hard for me to manage sometime but I am nowhere near being put in a special needs home yet....and my language skills have drastically improved over my life as well which is why I send out so many hugz to you and really hope you can find a real, openminded, helpful, and understanding (which si the hardest of all) source to talk to/type to.... I think only people who have no experienced the disabling effects of autism in their own lives or family know and admit and have learned to address and try to deal with the fact that it's not just some "cool" label to put on some really average NT who maybe a little quirky to stand out or look more unique..... and when society can do that hopefully we can start finding real assistance and treatment for those who struggle with it the most in ways that benefit THEM (be it physically, physiologically, careerwise, relationshipwise, etc)....hugz

I don't deserve to be treated in a way which I know to be unfair. Now if anyone could actually use paragraphs I can explain why I am not them and why I never was a threat to them in the first place.

there is a wide spectrum of people and there needs to be a wide spectrum of advocacy. maybe it would be good if we could have some sort of system where independent autistics advocate for people in institutions. idk how to make a system like this work, and i'd probably have to be over 18 to start making a difference.

I heard that pensilvania (sp) has an autism wavier program where you could get gov. hired staff to help you live independantly.
Talk to super trooper, he has alot of difficulties too but is benefiting from the PA wavier program quite well.

What is your biggest difficulty in living independantly. The blindness, the meltdowns, or the mental health issues or a complex combination of all of them?
They need to be doing more for you than just warehousing you. You need physical therapists that specialize in helping blind people learn to be independant.
As for the mental health issues...I dont know what mental health issues you have, but I was a psychology major in college, one class short of my major fulfillment which was psych statistics which I am truly disabled in math....my brain just dont work that way. My point is, I could point you in the right dirrection.

A big part of advocacy and self advocacy is knowing your choices and what resources are available for you.

Answer this question for me, Have you been declared incompitent by a court of law?
If not, you have alot more options available for you. If so, then you have to get the treatment you need to have a review of your compentency status.

But either way, I dont like how they run institutions where they just warehouse ppl, and not work with people to overcome their disabilities.
But who is in charge of your care? Ask them to work on these these things.
You need an evaluation of what is needed for you to live independantly
it needs to lists what are your problem areas and a plan to improve them
you need a disability technical engineer to evaluate you and see if there are any gee wiz technical assistive devices that could help you be more independant.
You need a complete neuropsych evaluation done which is very comprehensive and takes about a week or or to complete with a focus on understanding what is between you and living independantly with some assistance...and to devise a plan to get from point a to point b
The only place I know in the US that can do this all in one place while respecting your wishes is cumberland hospital in New kent, Virginia. They did such a work up for me when I was 14 and they laid out a detailed plan and trained my school teachers, parrents, therapists, rehab people to help me overcome much of my disability. I have come far because of them. I used to be the kid that banged her head on the floor and screamed because it hurt...and then do it again...repeat repeat. I also have dangerous seizures and am legally deaf. With their findings, outline and training program, I have learned to live independantly although it was not easy. I have gone to college, but now I am at home helping take care of my mom cause she has been having a hard time.
However, I am not the stellar example of rags to riches, but I have come far because of Cumberland and the people they trained to help me at home. I had an aide with me at my side the whole time I was at school. I hated it, but we became great friends and she was trained by cumberland. She was my Annie Sullivan. Without her I would not have made it through school because of my complex layering of problems. I also have tramatic brain injury from infanthood, severe executivve fuctioning dysfuction, profound ADHD, moderate to severe ASD, and auditory processing dysfuction as well as a 45 db bilateral hearing loss....the combination of both of them along with the ASD make comunication very difficult for me. I write much better than I speak. When I speak I sound like a babbling idiot. I also have OCD with bipolar tendancies, and sensory intergation disorder.
When I was 8 years old and nutted up and did not want to be human anymore so I spent a year acting like a cat or a dog, and I was hospitalized in long term. The psychiatrist told mom that I would probably end up spending the rest of my life in an institution. Well they did release me once the insurance ran out. I had another psychotic break when when I was 14 and was hospitalized again, well I faked a seizure and they thought it was real and did not want the liability, so they released me. Afterwards someone told mom about cumberland and that is when I started making progress. The testing they do is extensive 6-8 hours a day of testing for 7-9 days.
Anyway, without them, I would not have been able to finish high school and would probably be where you are.

However cumberland is for kids under 21 but you can contact them for resources for adults if you are over 21.

I hope that helps, The first step in self advocacy is knowledge of what is available.

Jojo

here is the link
http://cumberlandhospital.com/

i came home at age 16 to live with my parents again.im not sure why the decision was made i could come home at that time

@the author of this post.what are these places like today for your generation.i came home in the summer of 91.from people im still in contact with things have changed alot.how do you feel your treated in general.i always thought i was treated very well.the only thing with me my family had more money than most of the other kids.i was relentlessly picked on as the rich kid.i have no regrets,i never missed not going to public school or a regular prep school.my favorite was the kutchins institute in northamton,massachusetts