Howard Center has several divisions. There is Mental Health, which it is best known for. There is also Substane Abuse. There is Children and Family. And then there is Developmental Services, DS for short.
I get services through Developmental Services, through a Medicaid waiver program called the Home and Community Based Services (HCBS) program. In the state of Vermont, to get developmental disability services you must have either autism1 or an intellectual disability or both, and have limitations in certain life skills.
So proving the autism diagnosis wasn’t hard, but they wanted a current assessment of my life skills. So I was 24 years old, almost 25, when this assessment was done. It was done using the ABAS, the Adaptive Behavior Assessment System, the “Adult Form, Rated By Others,” meaning that my staff person (who had worked for me for 3 years at that point and knew my skills very well) rated how often I could do a long series of tasks listed. She asked specifically about whether it should be as I do with or without assistance, and was told to rate me as without assistance so they could get a true estimate of my abilities. My case manager from Easter Seals was there in the room the whole time. I was too nervous to even look at the test so I just sat there doing nothing. The test basically asks how often a person successfully does a series of specific tasks, from always/often to rarely/never.
An important thing to understand about this test is that it is supposed to test your abiliities as they are applied to the real world. That’s why it asks how often you actually do these things. Because it’s not about whether you have a theoretical understanding of something, it’s about whether you can actually do it. At least, that’s how the test is meant to be applied. Obviously it’s subject to the interpretation of whoever’s filling out the forms.
So these are the scores I got in the different areas.
First are the scores in each specific skill area. These are out of a scale that runs from 1 to 19, with 10 being average, and 1 being the least capable in this area and 19 being the most capable.
- Communication: 1
- Self-Care: 1
- Self-Direction: 1
- Community use: 2
- Home living: 2
- Health & Safety: 2
- Leisure: 2
- Social: 2
- Functional Academics: 3
They then divide that into three areas:
- Conceptual: 5
- Social: 4
- Practical: 7
Conceptual has a possible score between 3 and 26, Social has a possible score between 2 and 51, and Practical has a possible score of between 4 and 64.
Then you’re given a Composite Score that sums everything up.
The composite score is from a range of 40 to 120. My score is in the lowest percentile range for this test which is given only as <0.1. The numbers are meant to mirror the numbers on IQ tests, so 100 is average.
It’s also important to know that at the point in time this test took place, I was much physically healthier relative to now. The majority of the stuff I couldn’t do, that this test measured, was due to cognitive disabilities related to developmental disabilities. I did not suddenly and recently become unable to do these things because of physical illness or disability. I have been unable to do these things for quite a long time.
As far as how I see the accuracy of the test, I think it was pretty accurate. There’s only one area that I find misleading, and that’s the communication area. I got the lowest score possible for communication. This didn’t make sense to me, or to the tester given that she had a coherent conversation with me. But I asked my staff person what happened, and she told me that the test just happened to ask questions about the parts of communication that, especially at the time, I was the worst at: Small social nicety words.
So things like please, and thank you, and hello, and things like that. And while I’ve gotten better with those, at the time I really did never say those things to anyone. So she had to mark it down as rarely/never. So even though I was a writer, I got the lowest communication score it was possible to get. But I can’t say it was totally inaccurate, because for what it measured I really didn’t say those things. But it gives a very misleading idea about my communication skills, that the test didn’t even bother to clarify how well a person did things other than really basic words.2
The rest of the test just seems pretty accurate to me: Left to my own devices, I can do very little for myself.
The important thing here is that this was documented back in 2005 by Howard Center. As part of the intake process. So acting like I am suddenly capable of doing these things, or acting like my difficulty doing them is new and entirely due to physical disability, goes against stuff they have in their own files about me. I mean, in order to get into HCBS services in Vermont I had to prove both that I had a developmental disability of the sort they serve in Vermont, and also that it limited me in a certain number of life areas. And this was the limitation part. And it definitely showed that I was very limited in every single one of the life areas tested.
And there are specific reasons for that, but that’s a topic for another post. I just want to document the fact that my inability to do this crap is well-documented and was known to be related to cognitive developmental disabilities thirteen years ago, so none of this should be a surprise to anyone. Nor should the fact that skills training was tried extensively in California and didn’t take. And all the other things they used to know and have conveniently forgotten.
Also I hate assessments. They make me feel like a collection of deficits. It’s a very icky and medicalized feeling. Like having the important parts of you disappear like they never existed. No depth. But I’m glad I have documentation of this nonetheless.
1 By which they mean any label connected wth autism, so Asperger’s and PDDNOS count, unlike in some states. Which is not as much of a moot point as you’d think, because people still have old diagnoses from before the DSM-5, and also large parts of the world don’t use the DSM and have not merged all the diagnoses into one.
2 There’s a larger problem at work here that I don’t want to get too distracted by, but is huge: There’s an assumption out there that skills run in a line from basic to advanced, and that you have to have the basics before you can do the advanced stuff, and that everyone progreses by first learning the basics, then intermediate level, then advanced. And that everyone progresses along the same line, with the same set of skills, and so forth.
Which makes absolutely no room in the world for the fact that there are many people who learn skills in a totally different order. Or who can do something advanced but not the basics, like my friend who is severely dyscalculic and spent her childhood in remedial math because she couldn’t do arithmetic. Then a teacher found out she was obsessed with division by zero (which her teachers thought meant that she really didn’t grasp math) and told her to take that and run with it, and she reinvented the foundations of calculus. And got out of remedial math for good.
There’s lots of people who learn things in a different order. And there are actual disabilitis that cause a person to do something that seems advanced without being able to do the basics at all. This often confuses people. For instance, there are people with autism-related language disabilities that cause them to use very long words but have trouble with “simple” language. And the very long words convince people that they have no language problems.
So it’s actually totally in keeping with that kind of thing that I failed a communication test that tested “easy” stuff, at the same time I was writing long eloquent articles on the Internet. I really couldn’t do those “easy” words in conversation. So I feel like the test was accurate to the specific things it tested, but misleading as a test of overall communication because communication is a lot more than those supposedly “easy” parts.