Theme
4:01am July 20, 2014
alfalfascouting asked: wow! i saw your reblog on realsocialskills about disabled people living longer than their parents--i gotta ask, how do you get someone who comes to your place within 5 minutes?? can you get someone on the phone you can talk to about life stuff too?? my parents never taught me financial skills or household upkeep or anything and i really really want to know these things or i Can't move out

Wow that’s a long story so…

I went about a year without services, which proved to everyone that I desperately needed services.  I was starving, my house was filthy, I was urinating in random places around the house and yard, and any skills I had, just completely disintegrated.  Because when I have more to do, I lose more skills, due to using up all the brainpower on other things.  

So then I went to a Center for Independent Living and begged them to put me in a group home.  And they said “That’s not what we do here, we don’t put people back in institutions, we help you live outside of them.”  So he took a look at my home situation.  And he got my parents involved.  And he and my parents and I were all interviewed by the Regional Center, who control developmental disability services in California.  And while they dragged their feet as long as possible, and simply did not contact us when the deadline for admitting or dismissing me had passed… once we sent them a letter from Protection and Advocacy, they finally said “You were accepted, didn’t you know?”  I was told they play little games like that expecting that some people won’t push back and they won’t have to pay for that person’s services.

So I got two types of services, and these things vary by state.  I first got ILS services.  Those are Independent Living Skills, and that’s where they try to teach you skills so that you can do things for yourself.  It sounds like you might want to try those kinds of services.  I think they are different in every state and country.  When it was clear that learning the skills didn’t “take” for me (knowing how to do something doesn’t do shit when your problems are sensory and motor), they changed me to SLS, Supported Living Services, where someone comes out to your house and does things for you.  In reality, even the ILS teams had been doing SLS-like services, because they realized that I couldn’t do the skills I was being taught.  So they had been coming in and helping me do things as well.

Then I moved to Vermont, where they do things differently.  Everything seems like SLS here.  But there are different models.  Like you can get help in your own home, with people coming in from the outside.  Or you can have yor own home with a live-in roommate.  Or you can move into a care provider’s home.  A very small number of people live in group homes.  And some people have disabled roommates and share caregivers.  This is all developmental disability services, I’m not familiar with mental health services (other than they suck, and lots of autistic adults get thrown into them if the crappy doctors hired by the state don’t honor their autism diagnosis, which happens often), nor physical disability services.

So here, what I have is…

I live in my own apartment.

I have staff come in during the day, in shifts.  I also have one staff person who is from the Visiting Nurses Association, and she’s responsible for bathing and personal care.  And then at night, I have a service that was created to keep people from needing roommates.  From a certain time at night to a certain time in the morning, I set up my telephone a certain way.  Then, certain things, like pressing a button on my wrist, or opening my front door, or a smoke alarm, will all set off an alarm at their headquarters.  At that point, they can send someone out here within five minutes to find out what’s going on.  They can also talk to me through the phone at that point, no matter where I am in the house they can hear me.  (I can’t speak, so it’s limited to either grunting or anything I can type into my speech synthesizer.)  This program is called Safety Connections and it’s rare, until recently it was only a pilot program based on one other state that had it.  It makes it so that instead of having someone sleeping over to make sure I’m okay they have someone on duty at all times who can come over at five minutes’ notice.  That person works for a number of clients who all have the same service.  This service has saved my life in many serious medical situations.  They came by, assessed the situation, called 911, and helped me get ready t go to the emergency room, including finding someone to go there with me.  They have also come for lesser reasons like cleaning up cat puke.

One thing that can be important if you need developmental disability services is being able to prove you were autistic before the age of 18.  It’s ridiculous, but some states actually think you need to have been diagnosed before age 18, in order to have been autistic before then.  Even though to be diagnosed with autism, you have to have been autistic by early childhood, let alone before 18.  My diagnoses from age 14 did the trick.  California’s Regional Center system is notorious for this – I knew a guy with extremely severe, obvious cerebral palsy, who almost couldn’t get services because they wanted records from his childhood, 50 years ago, that had been destroyed.  There are ways to get in with an adult diagnosis, but it often takes several layers of appeals.

Also understand that in California, and in many places, there is a “fifth category” as they call it in California.  They have autism, intellectual disability, cerebral palsy, epilepsy, and fifth category.  Fifth category is anything that causes similar impairment to autism or intellectual disability, but is not either one of those things.  I had both an autism diagnosis and a PDDNOS diagnosis.  Since my childhood diagnosis was a PDDNOS diagnosis, they put me in fifth category, as they would if you had Asperger as your diagnosis.  And yet on all my paperwork they referred to my more recent autism diagnosis and said I was autistic.

In Vermont there are only two categories:  Intellectual disability and the autistic spectrum (covering autism, AS, PDDNOS, CDD, and Rett’s).  They leave out things like cerebral palsy or childhood brain injury, which makes me really mad.  They already underserve verbal autistic people, let alone people with developmental disabiilities that aren’t on the list.  They are fond of saying that verbal autistic people aren’t autistic, or aren’t impaired enough to need services – both, often, through outright lying and deception (I’ve seen this happen to people I’ve known, and to adult children of people I know through local parent groups).  They get thrown into mental health services, often misdiagnosed with something like schizophrenia, overmedicated, stuck in psychiatric group homes, etc.

Also, many states have an IQ cutoffs for services.  My IQ is 85 and it’s still above the cutoff for a lot of services in a lot of states.  Luckily, I live in a state without an IQ cutoff.  If you do live in a state with an IQ cutoff, and you don’t already have a low enough IQ, you should get tested just in case:  Sometimes even when you think your IQ is high it isn’t necessarily.  My 85 IQ came as a complete surprise after a childhood in gifted classes.  I have no idea what my IQ would be if tested today.  Sometimes if your IQ is close to the cutoff and you lack a lot of life skills, they’ll give you some slack, other times they won’t.  

In those cases, your choices are basically to do without services or to move to somewhere with better service opportunities.  But even then you won’t be guaranteed a spot.  They do a lot of testing, and not all the testing is done fairly.  I know someone who had a tester refuse to administer half the test – she checked her off as “able to do” a bunch of things she couldn’t do, without even asking her.  And she had no recourse to appeal.  Luckily she had a severe physical disability, so she went and got physical disability services instead of developmental disability services.