I was at the Massachusetts State House for the hearing on May 21, 2013. This is essentially my liveblogging of the testimony on H76, 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 Warnings: Abuse, ABA, possible presumptions of incompetence.
H76
An Act to provide equal access to
medical treatments essential to children with autism. Member of
Autism subcommittee testifies.
Requires coverage for ABA (ew) and AAC
devices (yay!) It would allow more children to receive services. This
person has a child with autism and said that the diagnosis was hard
to hear. (I blame societal ableism for this.) She also notes the
number of autistic people who are not speaking (this is what AAC is
for) and the tendency to avoid eye contact/engage in repetitive
behaviors (um, not actually an issue unless you make it one, so SHUT
UP.) Also notes SIBs, which are potentially problematic, but ABA
isn't going to fix the root cause.
2nd testimony: ABA program
director (EW) is supporting the bill. "Autism and those affected
by it."... CAN WE NOT. Really, can we not use that euphemism?
Because that's what it is. Talks about all kinds of things that
therapists like to help with, helping a person with their first job
or learn to shower independently. Not talking about suppressing
stimming. I hope they know better than to try, but I doubt it. Also
talks about how education is lacking for us, which is an issue. They
think ABA is a form of "good" education for us, I disagree.
By the time they've changed it enough to be not directly abusive, I'm
not sure they can really even call it ABA anymore. They have to call
it that, though, because insurance. Which is an issue that also needs
fixing.
3rd testimony: I think it's
the first person from H75 again. Wanting to get the EI coverage to
carry through so that people can get helped. It's apparently a
bipartisan bill. Talking about how this affects everybody. This is
apparently also a high priority thing for the ARC, will need to look
up who all they are. Notes again that 50% of us are nonverbal or have
very limited speech, wants to have iPads and other AAC devices
covered. (I'm not sure I believe the 50%... maybe just kids at/below
a certain age, because I do know speech delay is a thing?)
4th testimony: Everyone's
saying how great ABA is, how effective it is except for Autistic
adults, who are all "This gave me PTSD, stop it." But no
one listens to us... and this person isn't bringing up our issues
with it at all. Heck, even Carly Fleishmann has brought up some
issues, says it might be the cause of her OCD, but no, this person
doesn't bring that up at all because ABS is apparently wonderful.
early intervention can
apparently mean huge savings over the course of a lifetime- savings
over what alternative, might
I ask? It's not like I've seen much in the way of education for
Autistic people that is actually good. Oh, good, she's talking about
the communication thing. Notes that all
the behaviors get worse when communication isn't possible, which is a
bit of a "well, duh" but needs stating and is a better
point to hit than how "awesome" ABA is. Because trying to
ABA away a behavior that is trying to communicate a thing? Really
not OK.
5th
testimony: Therapist, director of something. Finds that demands for
services increases with these sorts of things because awareness is
increased and people figure out that this would be useful. I'm not
entirely sure what the aim of that point was. Maybe so that the
government knows that there is a big demand even without everyone
knowing it's a thing that exists, so it's important due to high
demand that's just going to increase.
I'm
not entirely sure how I feel about this bill. ABA being the thing
that is covered really squicks me, but I want an iPad or other AAC
device in the hands of every autistic person who can use them. I
guess it's going to come down to "if parents and service
providers make good choices, this can be very good, and if they make
bad choices/presume that lack of speech means incompetence, this will
be very bad." That's about the current status quo, though. Meh.
I know it's super important, though, because of the AAC thing and
that it covers non-dedicated devices (things like tablets that can be
used for more than just AAC.) So I want it passed because of that
bit. I just don't trust anything with ABA as a big thing. Which means
I never trust the government agencies related to autism. Ever.
early intervention can apparently mean huge savings over the course of a lifetime- savings over what alternative, might I ask?
ReplyDeleteI think people believe that early intervention will make autistics be (or seem) more normal, and that being (or seeming) more normal will make one more likely to be "independent" and employed as an adult. And therefore, by spending money on early intervention, you don't have to spend money on paying for group homes for autistic adults -- or something.
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