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4:26pm August 12, 2014
Anonymous asked: I am a teenager who is losing skills. Is the Lanterman Act only is California? When I turn eighteen should I take a train to California?

I’m going to assume you are serious and give you a serious answer.

Lanterman Act is a California-specific thing, but there are things like it in a lot of states.  California is not necessarily a great place to be as a disabled person, and even if you are autistic, there’s no guarantee they’ll see you as autistic unless you have all the right paperwork in order.

One thing you should be probably doing is getting as much documentation as you can, of whatever disabilities you have.  If possible, it’s best to get documentation of the disability that carries the most weight.  For instance, on the autism spectrum, then a diagnosis of Autistic Disorder is best, although now it would be Autism Spectrum Disorder or whatever the DSM-V uses, so that’s possibly a moot point.  But for instance Autistic Disorder is better than PDDNOS or Asperger’s when it comes to getting services.

If your IQ is below 70, that helps in some states.  If it’s not, well, you’ll just have to make do.  (Mine was not below 70 at last count – it was 85 when I was 22 – so there are states where I could not get services.  But many states don’t have an IQ cutoff.)

The reason you want to get a diagnosis now if you don’t already have one?  Is because there’s this thing a lot of states do.  I don’t think it should be legal for them to pull this shit, but they do it anyway.  Where they say that in order to prove you have a developmental disability, you have to have been diagnosed prior to the age of (18, or 22, or wherever the state’s cutoff is for DD).  Even if your diagnosis is one where by definition you have to have had it before that age.

So like, with autism, you have to have had it before the age of 3.  Even if you were diagnosed at the age of 45, that still proves you were autistic at the age of 3.  But in California, a person diagnosed at the age of 45 will have a much harder time getting services – if they can get services at all – than they will if they had had a diagnosis even at the age of 17.

I was initially diagnosed at the age of 14, which is why I was able to get services in California without a big hassle.  There was some weirdness about which diagnosis they accepted.  Because at 14 I was diagnosed with atypical autism and at 18 I was diagnosed with autistic disorder.  So they did this weird thing where their funding paperwork said I was “fifth category” (not autistic, CP, ID, or epileptic, but something that functioned like one or more of the above), but my IPPs said I was autistic and diagnosed with autistic disorder.  This, again, had to do with their weird thing where the diagnosis that took place prior to the age of 18 took priority.

And that’s just some of the hassles that can come up.  California is not that disability-friendly a state, it’s just a state where I was lucky enough to be able to get some services at all.  Many of those services were hard-won.  It wasn’t that they ever denied me services outright, but they made things difficult and threatened to put me in group homes and other things like that.  

If I were you, I would be doing the following:

1.  Getting a formal diagnosis of the most “solid” type you can possibly get.  As in, try to get a diagnosis of autistic disorder (if going by the DSM-IV-TR) or autistic spectrum disorder (if going by the DSM-V), not Asperger or PDDNOS.  But Asperger or PDDNOS are still better than nothing and will be accepted in some states.

2.  Do a lot of research as to what services are available in what states.  Talk to people who have gotten services in those states.  Find out what the process was.  Sometimes the process involves getting re-diagnosed by an independent doctor or panel of “experts”.  Sometimes it involves getting an assessment of your daily living skills.  

3.  If you have a physical disability, consider getting services under that instead, at least as a backup plan.  I know people who have had to do that, in order to avoid getting thrown into useless mental health services.

4.  Always have someone with you, if possible.  As in, have parents who can verify things.  If not parents or family, have someone.  Anyone at all who can verify anything at all about your diagnosis, about your abilities, about your daily life.  Even just having someone else in the room with you will make people more likely to listen to you.  And you may, if planned ahead of time, want this person to do all the speaking for you, sometimes that makes it go better.

5.  When talking to anyone about things you can’t do, talk about your worst day.  Because when they plan out services, if they plan out for your best day, and you have a bad day, then they won’t be able to do that stuff for you.  Like if on your best day you can go to the bathroom by yourself, but on the worst day you need help going to the bathroom.  Then you’d better say you need help going to to the bathroom.  Because imagine it’s your worst day, you’ve told them “oh I don’t need help in the bathroom most days”, someone comes in, and you need help on the toilet and you can’t get it.  It’s like that.  When having people fill out assessments of your abilities, be sure and tell them to fill them out as if they are your worst day, too.  

I had a lot of help getting the services I got.  I had help from my mother.   I had help from my durable power of attorney for healthcare, who basically functions like a second mother to me.  I had help from staff people who were willing to fill out forms about what things they did to help me, and what things I could and could not do.  I did not do all this alone.

Also I don’t live in California anymore, I live in Vermont.  Vermont and California both have serious up and down sides to their services.  Having already had California services helped me a lot in getting Vermont services.  I have seen Vermont turn down flagrantly-obviously-autistic people for autism services and try to tell them they’re schizophrenic or something, more than once.  It’s an ongoing problem here.  (In one case, the guy who was assessing the autistic people, who said he saw “no sign of autism” in a guy whose autism I spotted in under two seconds… the assessor turned out to be convicted of fraud in another state or something.)  I’ve also seen them assess people’s skills in ways where they’d ignore what people said entirely, and mark down their own guesswork as to what the person was capable of.  I got very lucky.

There is no perfect state where your problems will all be solved.

But you can do research, and you should be doing your research, as to which state is the most likely to help you get the services you need.  And you should be preparing whatever paperwork you need to prove that you need services.  This would be paperwork proving your diagnosis (or more than one diagnosis, if necessary), and paperwork proving that you have daily living skills problems.

If you’re losing skills, you might have autistic catatonia.  If you do have autistic catatonia, and are assessed as having it, there’s now an actual way in the DSM that it can be added onto your autism diagnosis.  It reads like this in the DSM-V:

With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)

That can be important because if you’re diagnosed specifically as having autism spectrum disorder with catatonia, that gives them more proof that you’re not only having trouble, but going to be having more and more trouble, with daily functioning and ADLs and IADLs and the like.

I don’t know how much help you have, how much money you have, what situation you’re in, or anything.  I don’t know how much of this you’re even capable of doing.  But this is everything I would be doing in your situation if I had the ability.  And never, ever count on any state, or country, being the promised land.  There are cuts happening everywhere right now.  People who desperately need services are being kicked out of services.  It’s a dangerous time to be disabled, for anyone, and an especially dangerous time to have a severe or progressive disability.  I’m making my own plans right now, knowing that some of my disabilities are progressive, and trying to position myself in a place where I will still be able to get services but won’t be thrown in an institution.  It’s hard.  It’s hard everywhere.

California is not the state I would pick.  It’s just the state I happened to grow up in.  I really like it here in Vermont but I would never tell someone to move here and count on getting services because they’re really good at denying services to some of the people who need them the most.  If you can get services, and if you can get services from people who are sufficiently respectful to you, then things can be great here.  Especially since there aren’t many group homes left and they’ve done away with large DD institutions – most people live in our own homes or with roommates.  But it’s hard to get into these services so I would never say “Move here, it’s easy.”

Notes:
  1. withasmoothroundstone posted this