2:35pm July 24, 2013

➸ Janna's weird crap: autistic-auntie: mulder-are-you-suggesting: There aren’t a lot of...

andreashettle:

youneedacat:

autistic-auntie:

mulder-are-you-suggesting:

There aren’t a lot of services available for autistic adults, and it seems like the majority of times I hear about services that actually *are* for autistic adults, they tend to focus mainly (or, often, exclusively) on “the transition to…

Although I think absorbing it into DD services or general disability services is exactly as it should be.

Services aren’t supposed to be about your diagnosis. They’re supposed to be about what you need. And there’s no one specific diagnosis that has totally unique needs not needed by people with any other diagnosis.

It’s not like physically disabled people get totally separate services (I’m talking daily living support) for MS, rheumatoid arthritis, stroke, or spinal cord injury. There may be specific rehab, but not general services.

A lot of autistic people seem to believe autism is unique and should stand apart from other disabilities. And so consciously or not there’s an expectation that there will be “autism services" instead of DD services or cognitive disability services or disability services or occasionally psych services. Because seriously, not that unique. Everyone autistic I
know who has qualified for adult services is in the DD or general disability system or both, or occasionally physical disability services or psychiatric.

Adult services exist. They’re just not always set up right. And if they started making autism services totally separate, I wouldn’t want it. The best people for the job have no autism training. Imagine if they trained them all in autism it would be awful making them unlearn everything they think they know. Plus, the DD community is the closest community to a home I’ve ever had. It’s more diverse than the autistic community in every single possible way. It’s people United by common experiences, not by a diagnosis. (And is the only disability community I’ve ever been involved in that is as racially, economically, and ethnically diverse as the general population. Not to mention diverse in terms of disability. DD covers every basic kind of disability. Every one. And all of this diversity makes us a better community than most disability communities I’ve ever been in.)

Maybe what we need is some equivalent of the “Individual Education Plan" that US law mandates for students with disabilities—except that what I’m trying to picture here would be better termed “Individual Adult Services Plan" or some such.

The idea being that once it is determined that you are an adult who needs some kind of ongoing support services in order to lead a more independent/autonomous, fulfilled life out in the community, a team of people (always including the person with a disability) would work together to identify what services and technology you need regardless of what diagnostic label leads to those needs. For example, it is not only deaf people who can benefit from video phones or captioned phones, some people who have auditory processing disorder could benefit from them also. But usually it’s a lot easier and cheaper to get these phones (like, free) if you’re deaf. Or if you need someone to help with the logistics and process of paying your bills, you get signed up for that service whether you need it due to an intellectual disability making it harder to understand and interpret bills and know how to send a check or because you have executive functioning issues that make it hard for you to sit down to do the task of paying the bills on a sufficiently regular/prompt basis that you won’t end up being penalized (as in, late fees, or hurting your credit score) for being late all the time.

I can’t add much right now, but that approach would make a lot of sense from the standpoint of actually providing the kinds of services that people need.

Those things already exist. That’s how it’s done where I live. It’s called an IPP (Individual Program Plan) or ISP (Individual Support Plan). These are not new ideas and they’re implemented all over the place. Everyone involved in your care gets together and talks about what’s needed including you. And then the plan gets written based on that. And then they use it to try to get the amount of money needed to support you.

Really wondering, are most people who talk about this not getting DD services? Because that’s kind of the standard way to do it a lot of places. There are assessments, but that’s just to judge if you need services, not which ones you need.

(Like I was given the ABAS, and scored a 47. 40 is the lowest possible. This was back when I could do much more, too. So I easily got services. The ABAS is scored with the same number system as an IQ test, but it’s a measure of daily living skills, not whatever the hell an IQ test claims to measure. But they didn’t use the ABAS to measure what services I need, just whether I need them.)

I’m sure there are places that just assess you or go by diagnosis. But that’s not what they do here. I mean you have to have some kind of DD diagnosis, but beyond that, diagnosis is not used to determine what services you need.

That’s exactly what I was trying to say – this is already happening. In many places, this is already how it is. You have a disability in some broad disability category, you get added as needing services, and then they create an individual support plan based on needs, not diagnosis. That’s all. That’s what’s done now. Not in a hypothetical future where someone might someday do this.

Again, I know not everywhere. But this is how it is everywhere I’ve gotten services.

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