I was at the Massachusetts State House for the hearing on May 21, 2013. This is essentially my liveblogging of the testimony on H78, except that it gets put up later. This is in four separate posts, the others can/will be found here:
Lydia Brown's written testimony can be found here.
Trigger Warning: Suicidal ideation, ableism, tragedy/burden talk
Trigger Warning: Suicidal ideation, ableism, tragedy/burden talk
H78: An Act to permit the DDS to provide services to developmentally disabled adults.
1st testimony, same as 3rd person from H77. They currently can't do much for adults with IQ above 70 (yeah, I'm doomed if I ever want help.) 46 other states have already made changes that are similar to the ones this bill would do. Broad bipartisan support for this bill. Talks about families struggling to get by and parents worrying. (Meh.) People are meeting criteria for developmental disability, and needing help, but are not eligible for services due to IQ over 70.
2nd testimony: People can lose skills, people can go from 5 days of full time activities to nothing at all. Parents sometimes wind up quitting jobs to supervise (WHY is constant supervision so often assumed to be a thing/people not taught things to not need it? Yes, I get that some people really will need it because of various reasons, but most autistic people can and do get to a point where they don't need it and can be home alone for the day if, say, food is prepared and out. There is generally a workaround for any specific skills.) The bill would determine eligibility based on adaptive functioning instead of on IQ, meaning that there would be more to do with actual needs than before.
3rd testimony, from I think 1st person to testify on H77, the database bill. He's on the board of directors for Aspergers Association of New England, and it's one of their top priorities too. He is autistic himself. His resume is good, but it's a veneer that glosses over many issues. He needs and gets help, now, and wishes he had gotten it earlier. It's never too late- one can teach an autistic adult new things, just as one can teach anyone new things. Services, including the ones that helped him, are hugely important.
Note that ID=intellectual disability, DD=developmental disability, I use the abbreviations because I'm not actually a super fast typist. I'm typically using only one or two fingers on each hand, my right hand is just using the index finger most of the time.
4th: Disability law center person. He's talking about a narrow issue relevant to this issue- where we stand relative to other states in providing services to DD adults. Massachusetts is still trying to fit DD adults into the hole of ID to get services, which causes people to fall through the cracks. Don't just define ID to make it so DD can get in more often, make it so that DD but not ID is still eligible! Found that the eligibility standards for other states were only this picky about ID when there were services meant for those with DD who did not also have ID. Which, if he is correct, means that MA is way the heck behind. Whoops. Considering that disability law is his thing, I'd believe it. (Vermont requires ID or autism, if I recall.)
5th testimony: Aspergers/HFA can and does still need services. Can meant that showering feels like shards of glass to the head, people understanding words but not intent. Can't cook, clean, etc. It's a thing that happens. 75% not working. It's not "mild." It's just a different set of challenges. Even basic services, helping keep the house together, have food, get employment and keep it, could be the difference between homeless and productive taxpaying citizen. I'm pretty sure that this person is not autistic, but is saying mostly reasonable things, I think.
6th : Addressing needs for supports in DD but not ID, it depends on the state and is kind of a big issue. There are no services for autistic adults without ID in Massachusetts. We often have awesome skills and just needs a bit of help to be marketable with our skills. Except there is nowhere for us to get this help. We age out and that's it. Age out and transition to nothing. A whole lot of people want to be testifying for this, but can't for whatever reason. Some are autistic themselves, some are family members who are full time caregivers. Everyday living skills are a thing. IQ doesn't mean you have them. And someone needs to help when we don't have them. Heck, there are services I could really use help with that fall under developmental disability stuff. (Doesn't mean the way she's saying the things is great, she is kind of tragedy talk in saying this stuff...)
7th: Autistic person. Now only works 3 days a week, looks like it costs money to work, instead of him getting paid. Well, that's an issue. There was a thing that used to have funding, but not anymore as of 2011. If something were to happen to his mother, who is the one paying that money, he doesn't work anymore. Plugs for his show, www.ablevision.org. It apparently did a thing interviewing Temple Grandin.
Oh, and can we talk about it costing him money to work instead of getting paid to work? THAT'S NOT OK AT ALL.
8th: Also autistic, started off in public school but needed a tutor. School stopped providing the tutor in 4th grade, sat in the back. Eventually wound up in a school for emotionally disturbed children, though not emotionally disturbed themself. No one knew what to do with autism. Went to a residential school for a while. Then community program, graduated HS, takes 1 course at a time in community college and gets help living in own apartment. Says they want to die before parents do because they will have no support. (But if getting actual supports could be a thing? That could be different. Please, I hope it could be different.) IQ tested at 71, so no ID support, but the bill would get them supports. Which they really really need. Seems to feel like a burden, and the whole wanting to die before parents do makes me want to take an axe to society for being a load of ableist fails.
9th: Son has PDD-NOS, does not qualify for services by 2 IQ points, but not fit enough to get services to help him get a job. So he's between the cracks. He needs some sort of support, and doesn't get it. He lists as the first of his good qualities that he's "good at improving," and wants the chance to do so. It's his mother testifying, and I don't think she quite gets the whole "Autistic people can hear you" thing. It's a pretty common issue. Can we stop calling us burdens, thanks?
10th: Has a 12 year old daughter with Aspergers. High IQ, wants to go to MIT and study neuroscience, ability to function in the world is not so great but she can't get services because high IQ. Social skills are also a difficult area for her, so I'm a bit worried about the social skills training that she's probably gotten and that may well have made it worse. Social skills classes tend to do that, setting us up to get abused and all. UGH SHE JUST CONFLATED MELTDOWN AND TANTRUM IT IS NOT THE SAME THING NO NO NO STOP NO NO NO THESE ARE DIFFERENT THINGS. There was one person who says his life is miserable, he can't get services because his IQ is too high, but he can't work without services. Another bright, articulate person, no services, can't work without services. It's a thing. Maybe it's getting an interview, maybe it's executive functioning, maybe it's cooking, needs some sort of help is a common thing.
11th testimony is from a mother who is coming in out of order because she is her son's sole caregiver and he's calling her. He's autistic. IQ tests at 71, functioning, social, self care are all things he needs help with. (She said it was at the 2-3 year old level. Um, can we not do the whole mental/functioning age thing? It's creepy.) But his IQ is 71, so he doesn't get services. She's talking about "managing" him and searching for answers, searching for a way to get him help. And there isn't any, because his IQ is one point too high. Talking about "managing" him is also creepy. This mom creeps me out.
12th: Single low-income parent of two working towards a bachelors degree, her 14 year old son doesn't get services because his IQ is too high. He participates in sports and gets some minimal services, but he needs real services that she can't afford to get. She's trying to keep her GPA up so she can eventually pay, but that's not the current reality. He'll be 18 by then and there will be no supports, joining the 75% of their adult clients who are unemployed. He's awesome, but he needs services to be able to stay out of that 75%. Wow, she's pessimistic about what her son can manage. Sports are better than formal social skills training if he's enjoying them, life skills can be learned later as long as there is someone to teach them. Services are important, yes, but the assumption that he will automatically wind up in that 75%? Working while living at home is a thing that can be done, and it gets around some of the potential issues.
13th: Commission of families and advocates representative, thinks it's a tragedy that this is a huge problem not being addressed, so many of us need services and can't get them. References a November hearing that he says is much like this one. I hope he's not talking about the federal one. Ok, looks like it might not be because there was apparently not media coverage of that one. Meh. I guess that's a good sign, because he seemed to think that hearing was important instead of being a complete mess. Which the House one was... actually, what kind of coverage did that have? Oh crud, it might be that one, all the coverage I remember seeing was in autism or disability media. I guess I'm not surprised, he did seem to be calling us a huge problem that wasn't being addressed, and that it's tragic how the problem that is us isn't getting addressed.
14th: Shows a picture of a kid, who has a pile of cool traits and is a computer wizard. Also autistic. Needs services. Sounds like he's bolting from his program- I am not so trusting of the program as his mother is, because I know how widespread abuse is in these programs, and people don't bolt from places where they feel safe. Also, his statement was that he was being abducted for one of these- if he doesn't realize that "abducted" is the wrong word for "These people have the legal authority to take me, but not my consent and I don't want to go," that would be pretty telling. Actually, I don't think we have a single word for that. Because it's not considered to be a thing that's wrong, it's considered to be a thing where the person who doesn't want to go is in the wrong.
15th: Wow this is a lot of testimonials on this bill. Has 3 autistic people in a program with IQ over 70 (Out of 200 autistic people in the program). One of them is 14s son. Still needs help with life, did jump out of a moving van. He just said "mental retardation," which, um, isn't actually a diagnosis anymore. Yeah, little bit not good. It could just be because he's old? Ew ew ew ew ew ew he said it again. Not a fan. I... am a bit more suspicious of the program now than I even was before, listening to him and knowing that he runs it.
16th: LYDIA of Autistic Hoya yay yay yay. She's Autistic. I know her. Is here in support of all 4 put fouth by ASNE and Disability Law. Notes that she works with ASAN. National standard is to use developmental disability definition, which is what H78 would make happen. It would allow people who need the services to get them. Not broaden the kinds of services that exist, but allows more people to get them, improving standard of living. Urges the committee to report favorably on the bill due to its importance in getting more people access to things they need. The fact that she supports it means more to me than any of the other testimonies I've seen, honestly.
17th: She's got a son and a brother. Son with formal dx, brother does not. It's a big thing. Typical development and autistic development are different. And supports are needed. He can miss nonverbal stuff. It's not intuitive, and it's hard. Asks "can you imagine?" Of course I can, I live it. It's hard, but it's not unimaginable. Missed part of her and 18th to talk to Lydia. The thing that squicks me here is the whole "can you imagine?" thing. We are right here. We can hear you. We can do a whole lot more than just imagine it, you're talking about this in a room with a much higher rate of being autistic than the general population and we can understand what you are saying. Why is this so hard for people to get?
18th: Says we can't fend for ourselves is what I notice as he finishes. We're not poor defenseless creatures, sir, we just have a different set of needs. I know we need to sound oh so impaired in order to get services and all, but really? Do we have to be tragedy talk and pity talk instead of just being frank about what the impairments are, what access needs and what service needs we have?
This bill is important. I want it passed. I also want people to remember that we can hear them and understand them. No, really. We can. Intellectual disability doesn't prevent that, and neither does autism. It just messes with how fast we can process it/which things we notice more, seriously how many times do we need to tell you this?