(Since The Facebook Files and The Twitter Files is-a-thing.)
Concurrent to The Hopeless Autistic, I’ve retained emails to my support people as well as the state level. At the time I had connections to the head of DHHS at the time who left because he was term-limited. As I reflect in the moment of 2016… the Commissioner at the time thought like me where there should be direct relations; but the people below him did not see it that way, if anything they doubled down on the supervisory nature of the patriarchal-bureaucracy. I should say Federalization, meaning any three letter Federal agency cares about if a subject has been rubber-stamped, without any nuance.
Another part of this was the autistic brain and the confusion of roles. If you remember grade school and being lectured about “roles” and “expectations” from higher authorities, well imagine this hell for four years while I was part of the planning committee for the Family Support Conference. The people worked for this part of DHHS happened to have family members with a disability, but it was unclear who was the authority, or a fellow family-support type? By no means was I intended to be any whistle-blower, or attempt to trivialize the FSC, but I suspected that the state trivialized it from within! The conflict of interest was very apparent, and conflicts of interest is based on perception. Of course I would never speak on this publicly until that perception was apparent. In 2020; an area agency runs it and lot of it was cut back, and now it’s run by mostly apparent mama bear types; and no external representation that the conference was known for. It had been canceled because of the pandemic
The female patriarchy of the system is stuck in a 1987 mindset of old mamabears knowing what’s best for the hierarchal disabled child. In 2022, I had expressed what this mindset could do to a non verbal type.
It’s important to outline the who, what, how they do things, and also to explain to an international audience, on the surface of how services and funding works.
The “pension” that other countries refer to is the “benefits” in our part of the world, there is various types of benefits for impoverished people. For people with ASD it’s typically Electronic Benefits Transfer or an EBT card that is used for critical needs; and also Social Security. Supplemental Security Income is the common benefits (or “pension” outside the country); SSDI or Social Security Disability Insurance. While my mother is the rep-payee; and I don’t know every detail of the benefits system, in order to get full benefits with SSDI, one had to work 40 consecutive quarters to be eligible or work for ten straight years. While I was working in my school to work program, in those 3 years, it wouldn’t count. Many people with ASD, on the mid to lower functioning end may had a job in school, but have been hobbling in adulthood. My of my recent peers are 7 to 10 years younger than me, and I am 10 years older than them, and my situation was just almost as identical.
The Medicaid system is a federal program, with two unique features, Many are well ware of the “insurance” plan for people that are poor or barely working class. The state pays for these at risk individuals, with the Federal government matching what the state spends. The Medicaid assists people that aren’t the elderly, but Medicare, takes care of the elderly though another system.
The other part of the Medicaid system that get attacked with unintended consequences of I am sorry to say the GOP is the Medicaid Waiver system. While the NH or even the national GOP since the 2018 midterms; just paint Medicaid cuts with a broad brush, the reality is that the Medicaid Waiver system would be at greater risk, but yet it’s never discussed even for William F Buckley Jr. style of PBS-grade televised debates. Make it it will never happen.
In New Hampshire disability supports, or the lack thereof, is through the Bureau of Developmental Services or BDS within the DHHS umbrella. Like the Medicaid system, the agency pays for supporting disabled people; and the feds reimburse per to their regulations. However this agency that has a lot of money with a lot of responsibility in a bureau. What that means, dare. I say “deflect” the responsibility and live on the New Hampshire bureaucratic ethos of “minimal” requirements. In this Caucasian nationalistic state, Hold Yourself by the Bootstraps!™ Unable to? Not our problem, just try harder next time!
The state assigns 10 non profit “area agencies” by “Region [number here]”; by that part all case management, day program and day to day supports is funded by the state but the state does not get involved. There is many bureaucracies (some I would say is New Hampshire-specific, the whole patriarchal-stoic-bureaucrat type… but that Commissioner was far from it!) Applying for the services after high school varies, some wait till after you turn 21, other area agencies work with school districts and start working as soon as the child is 16 years of age. Ironically the “D” in BDS implies the stereotypical Autism, Down’s, etc. but I’ve seen people from just being deaf, to people in wheelchairs, with physical disabilities more and more in programs where it’s expected for an autistic to be in. Excuse me while I laugh in disgust.
The input comes from again multiple community groups, like the Family Support Council and a self advocacy group. This is part to ensure the state is in theory complying with a post- institutionalized world; but again the state gets away with a lot of responsibilities outside of money. The whole “Community Based Supports” garbage, can be thanked to the special-snowflakes of the world, and the federal restrictions.
The other parts of the support system includes Vocational Rehabilitation that is typically for people with short term disability, or acquired a disability later in life, where supports are minimal. In recent years after people like me were confused where they should belong to ave the strongest support, the short term VR has worked more with the area agencies than before acting solely as the job development arm of one’s support and to work somewhat seamlessly from the other supports that is funded through Medicaid/BDS, but VR since I had exited out of being an advocate has been severely cut to the bone. It’s a shell of it’s former self. When I had done the research for job development for the umpteenth time since 2009, I was extremely shocked that the Web presence of VR, has less than 10 sub pages deep from the Department of Education. As the IT operations has improved in our state government, it was clearly not some incompetent or underworked staff, it must speak for itself.
As with any government agency, it’s subject to audits, but again Live Free or Die only applies to the people in power. Regular families and individuals are victim-blamed for being vulernable citizens, and “accountability” is often redirected to them. According to public information from our state government, any special needs/disability agency has been audited only three times in modern history, the 1991 audit after the closure of Laconia; a 1999 audit to the Department of Education with regards to the Special Education unit; and the infamous 2016 “$40 million surplus” (ahem, because your regulations forced a pay cap, so professional direct support staff were paid like babysitters without proper benefits, and finding those people too.) Ironically in those 32 years, the information technology agency had been audited 3 times just over a decade, amusing to read, as a nerd on these subjects, not just the disability system mind you.
Part of advocacy is to not be too self-centered, but come off as selfless. I can’t speak for other people but only myself, but if I can speak out of what I am not experiencing, maybe that voiceless other person could, and I say, could be feeling the same. DO NOT WRITE US OFF.
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