Editorial Note: Some of this information may be giving the public too much about the “welfare” system of my state. I am by no means advocating this for people to take advantage of the system. It’s important to understand how the existing Medicare system works in a brief sense, and if any changes happen to the system, the actions could also create even more serious, literal bloody hearts to the autistic population in my state, the Granite State. If the changes as indicated in special interest groups, it will cause even more problems that the taxpayers will have to be on the hook for (if only inferior special ed programs were not only so expensive, but so inefficient too.)
My services I receive in the state are Medicaid waivers, the ones used outside of the Medicare/government health care plans. Without going into specifics the way New Hampshire works is they receive funding from the Federal government then disburse the money to about 10 “area agencies”. In total, this is about 30 or so organizations that are traditional developmental services, chronic health and mental health.
The most ironic thing is that some individuals may have one or more issues (whether they are cross diagnosed with Down’s syndrome and autism; an autistic with depression or someone who had an acquired brain disorder but say they have depression too.) The system is not designed to help for both cases, you have to go to the agency that you have the most issues. (At one point when I was on the “waitlist” for over 16 to 18 months, my own psychologist who claimed to know everything on autism, suggested I go to my local Mental Health agency. The mental health is for people who are really “loopy” sorry to say. I wonder if my psychologist was really scared of me..)
In other states like Massachusetts, from what I know, is that all of the Medicaid wavers are done by the state agencies, at least two, the Developmental Disability Services (formerly known as the Department of Mental Retardation as late as 2010, during an election year!) and Mass Rehab. DDS and Mass Rehab does have third party vendors, but they contract with the Commonwealth. In contrast, the State of New Hampshire’s government for all of these services are done with very few people. The Developmental Services bureau employes less than 18. Most of their jobs is to oversee the agencies plus the vendor programs. The New Hampshire system was created under a very tight to the right Republican, John H. Sununu in the mid 1980s, while most of Massachusetts’ system dates back to the “Duke” (and if you’re a local like me, you know him as Michael Stanley Dukakis, who was responsible for renaming the state “Taxachusetts”. In fact many of the democratic hacks since the late 80s have only made moderate to severely autistic people hopeless, more on that in future posts.)
In recent years, in the southern part of the state, a movement to “Client” or “Consumer Directed Services” came in the late 00s. This enabled individuals like me to go a completely customized solution, with reason to the vendors and allow me to have my own goals, my own way of program delivery, etc.
The problem is how can it be true? As your mother would say “if its too good to be true, then it must be.” Especially if you come from the stigma of being mislead about your Individualized Educational Plan. Especially if you were your own guardian between 18 to 21. IEPs aren’t what they are cracked up to be, so if you struggled in school, how can you change your thought process?
I’ve been in 2 vendors since 2010, one for about 2 years, and the current one since the beginning of the year. The latter seemed to have more hope, but I am against more severely disabled people who are not in CDS like programs, but I have to (by means of common sense decency) try to assimilate with the non CDS/at risk/severely disabled and try to keep my goals and my needs to my own business.
Because I am still with the program I do not want to go into really dirty details, but basically the program treats everyone no matter what system they are in, like children. Some of the staff are very impatient, and come off as “bossy”, while the vendor has defended themselves to me stating it was a misunderstanding. I don’t care if its a “goal” vs “what they grew up with” vs if they are in a CDS program or not, they should have some right to being respected with some decency. At least can it be an option!
So even in a CDS system, I still feel like there is some “cookie cutter” that I can’t even fit in! I’ve tried and tried and tried to get into a program that will fit me at least 90% (since life is not all about you or be fully happy…)
I got an Xbox 360 for Christmas in 2013. I haven’t played it in a while. It’s because I’m spending all my time and resources trying to find a program somewhere in downstate NH and trying to find the best program, tried to find a “safe” place for work, and tried to contribute to society at the most I can.
Also trying to find a “safe” place where I can meet my own goals without being a target for doing something “wrong” or not meet to the vendor’s own expectations or be called out for being “immature”, etc. All of this “noise” of mixed signals and mixed messages on both Concord, the local area agency (to a lesser extent) to the vendors, (to some extent) to even the training standards is how you could possibly be messing up children that become young adults.
This is what I call “goo” – that gets put in the brain takes years to wash away and this “goo” also scars and eats away of ones life. Why has the state of New Hampshire allowed this to happen for so long? They have caused a micro generation of autistics and similarly disabled people to be “stuck” with this crappy “goo” for no reason. Why did this state not act more gutsy and break “social rules of the road” and call out the offenders?
There is a reason why being holy doesn’t get you places. If you are holy like Switzerland Cheese, your diplomatic approach to life will just create a hole in your heart. You may have a hole in your heart, but your actions creates holes into other’s brains. Whats worse, being all “Swiss” also enables you to fill the hearts and brains with this “goo” that takes decades to get out and recover.
