I am in the process of porting some of my work at The Hopeless Autistic to this page in a form of consolidating as my advocacy has been for the most part finished since 2016. Over the last year, there was still new developments as one story of one New Hampshirite on the ASD spectrum. Some of the more coherent posts will be ported over later this summer.
I am not a Steve Jobs.
I didn’t just happen to make a radical prediction that in four years after creating this page that the developmental disability system would ultimately collapse in 2020.
This past week, the State is still dealing with budgeting issues as 2020 in the Fiscal Year sense began on the 1st. It actually made news. In fairness, to put a disclaimer, the area agency featured in this WMUR-TV package is my area agency.
I am not in a position to criticize the area agency directly, as if I do, it would raise red flags as someone who has a big grudge and may be threat to people. Having social defects along with strong views against the contrary can be punishing.
Overall it’s not just my area agency, it’s a statewide issue and many different people in power are to blame. I do not understand how the area agency doesn’t have money, and what they are trying to finance for those people on the “waitlist”. This wave of people aging out of school are what i call the “second generation” and that tsuamni wave peaking. These are individuals that are five to twelve years younger than I am. This is also that “generation” that believe vaccines caused their autism. Not everyone on the waitlist is autistic per se, wanted to be clear with that.
The only way to “change” is how you respond to these “changes” by not reacting poorly.
I feel that overall “the system” got so complacent on their belief that closing that statewide institution in Laconia is their only legacy. People of a certain age just keep on droning worse than someone whose really autistic about the 1991 revolution.
Just after Laconia closed, the system that was touted as “cost effective” would prove to backfire and make the “the system” more complex and unfair challenge for DSPs and the individuals themselves.
Some agencies were more progressive and in a few years that has disappeared. While other disabilities (such as Down’s, physically handicapped and even the deaf) are getting services, I feel it comes at the price of the developmentally disabled.
People like me who are so right in the middle depending on the day of the week are actually more of a challenge to the system despite my low-maintenance, high-availability situation. Politically on an idealistic scale, the system shouldn’t be servicing individuals with this dynamic situation.
I have had a change of support over the last year, my day program which I haven’t discussed a lot, I have been since March of 2017. While they much better than the other one; there are changes. The faces at my area agency has changed over the last year. There’s a lot of “changes”. Changes that have been in the chatter since 15 to 20 years ago. so many staffing changes had occurred because they had empty promises. And now the threat of these changes are actually happening that people who have left “the system” entirely are like “oh?” like a reaction to a Chicken-Little-effect.
In every industry, ego is a driver to ether success or failure. In some places I had been in (again without names), some of these companies (or at the state level) acted like a monarchy. There are people who are trying to be groomed to the next line of throne to get the control for the “changes” to make them feel good about themselves at the price of the individuals. Some act like a princess and some backstab, brown nose to get to the top. Individuals are politcally exploited by the typical-minded, post-menopausal Caucasian women, whose mummas love is the answer to servicing the disabled. Basically disabling the disabled and not enabling them. There is a lot of “politics” not just the pragmatic ones, but the ideas in the organizational level. Too many people have radical ideas. These ideas do not result into solutions. Everyone is too chicken and are wussies to even have the guts to discuss this.
For me, this resulted in a rush to try to have a fallback position for about a year now. I needed to have some safety net when the overall system does collapse. Because I see the cracks on the ceiling and walls, I feel it may all come crashing down in the next two years. I wish I could be wrong. Currently other than family, I have no other fallback position to have the social circle keep me up other than the day programs because the unattractive nature would be a catalyst to get out of “the system” as it decays. What I mean by this is, not that I would loose funding for “services” or be kicked out of a program; just because you have “services” does not mean you have the highest quality of life. Someone like me have acted and discussed and cried out for help not because I wasn’t in the system, it was because the people in there were lousy at what they did. I am a vocal minority that could be speaking for others.
Unless you consider Facebook-friends and friends in name only, to be the solution perhaps I should be happy. But I am not. And I have used my time and resources learning about all my in-experiences to for one last attempt before the burning fire known as the system becomes a total loss.
No one has an open mind to build the system out of scratch with a clear mind, with no legacy baggage. Just like how autism awareness has and will be a dog-eat-dog world to get the rights to speak the “narrative”; “the system”, the state legislature, the agency, and the rest of that ecosystem will build the system perhaps before the 1991 closure of Laconia.
That for sure will mark the legacy of the hopeless autistic.