Massachusetts State House Hearing Part 3 (H77 and S23)

I was at the Massachusetts State House for the hearing on May 21, 2013. This is essentially my liveblogging of the testimony on H77 and S23, except that it gets put up later. This is in four separate posts, the others can/will be found here:

H75
H76

H78

Lydia Brown's written testimony can be found here.

Trigger Warning for mentions of abuse

H77: An Act establishing an integrated confidential data system among state agencies to track dx, treatment, services, and outcome of individuals with autism. (Hi language. And how are we determining outcome? I remember that article where "optimal outcome" meant losing the autistic diagnosis, but attention wasn't paid to other things like depression, OCD, or anxiety. Which is totally not an optimal outcome. Happy and Autistic is a better outcome than spending tons of energy trying to look not autistic, being depressed, and having anxiety issues. This should be obvious.)

1^st testimony is from a member of the Autism Commission, notes great difficulty getting hard data. Recent reports are best guesses using extrapolation, reports from other states, federal stats. Says information is critical for planning future expenditures. Employment: Notes that vast majority of students serviced are Autistic, that specialized employment services (like the ones from H75?) for teaching us to handle things like workplace politics and social things and interviews are going to be needed. (Rocket surgery? LOL) He's got testimony on the next bill too.

2^nd testimony: Resident, one son has autism. Works with AFAM (something autism Massachusetts.) Apparently autism stuff is housed in 18 different agencies. So data collection is kind of a big deal. Gets numbers for services, both the ones that are problematic and the good ones. Compares the 18 agencies to being like 18 RMVs: It would be a paperwork nightmare, the information should be all in one place.

3^rd : 1^st from H75 notes that this is in line with priority 6 of the Autism Commission, is talking that we don't know the exact numbers and that we need to know. Coordinated data collection, managing where we are going with services. Worcester person says data lets us actually do a thing and get the things done that heartfelt testimonies from families suggest we need. (Bit worried when I hear heartfelt testimonial by families because that's usually a sign of tragedy talk.)

I suspect that this is actually going to lead to there being 19 agencies instead, because that's how bureaucracy works. But if they could actually do this, it would increase access to both the good services and the abusive ones, so it would be a mixed bag then. Of course, parents who are determined to abuse the autism out of their kids will find a way to be abusive anyways, so increasing access to the good things that are offered could maybe be a bigger deal? I hope so, anyways. 

S23

Testimony from 3^rd person on H75, the bill is a bill to provide PCA orientation. She eventually quit because she kept being taken advantage of. One person had her doing weeding for hours and would send her home after she tired, losing hours and therefore pay. She thinks that the overall cost to the state of PCAs would be reduced due to less fraud stuff if orientation were to be a thing.