Governor Cuomo's Cruel Legacy
As the first wave of the 1990s autism epidemic ages into adulthood, we can expect chaos more than care. We've weathered decades of a complete misunderstanding of autism. Autism Speaks took over Cure Autism Now and the focus and dollars went to awareness and genetics testing. Neurodiversity groups like ASAN focused on acceptance AS IS and related only to the highest functioning of the community. "As is" is pretty awful for many with autism. That's painful to type, as a parent. We will have a deluge of adults with autism in the coming decades.
Many will be born to the anxiety generation - young adults themselves hardly able to cope, make decisions, problem solve, and think outside the box. I see parent after parent of grade school kids asking if there is a residential option, the behavior at home is "too much." And it may well be - most of us have lived it. Age of Autism has been sounding the alarm for almost 15 years. Anne Dachel continues to track thousands of stories of school districts under siege, families lost as sea, states struggling to provide a modicum of services. And how COVID has thrown a monkey wrench into everything. Schools are hardly perfect. Adult care is a disaster. With no answers in sight.
Check out this story from New York from The Times Union. Worry.
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State seeks to move severely autistic clients to secure facility
Lawmakers, parents say state agency exploiting 'loophole' that prevents disabled from receiving least restrictive care
Brendan J. Lyons
Sep. 12, 2021
ALBANY — The parents of adults afflicted with conditions such as severe autism say they are being forced by a state agency to choose between sending their child to a fenced-in institutional facility in the far reaches of the Adirondacks, or face the prospect of losing funding for their long-term care.
The situation has rankled a group of state lawmakers who say the practice, put in place under former Gov. Andrew M. Cuomo, is an apparent cost-saving measure that exploits a loophole in a 2014 law designed to give parents due-process rights in decisions about long-term care for their children when they reach age 21.
Some parents say they've been left with no alternative to sending their disabled children to what they feel is a remote and prison-like facility that apparently houses individuals convicted of crimes such as child sexual abuse or those who have been deemed incompetent to stand trial. Read more here.
"Emma, honest question: Have you ever known personally anyone who successfully negotiated with the State for funding?"
Home schoolers in some states were able to change the law such that they were able to access government funding for their special needs children, including therapy, at home as home schoolers (not considered to be a public school.) Bring your needs to the Lord and He will make a way. It may be provided in unexpected ways. Nothing was available for my 2 eldest because no one knew what had happened to them. Doctors were worthless. I continually asked Jesus for help, and He always made a way. We were able to pay for vision therapy and speech therapy out of pocket. Private therapy was superior and my child went 3 times per week for 30 minutes. I was given exercises to do with him for an hour a day at home. I think the volume of practice made a big difference. We did all of this and paid for all home school curriculum, school supplies, EVERYTHING, out of pocket. Yet, we did this on one income. The only time I used government resources for my children was when we sent one to a new at the time STEM charter school for high school. For 4 years, I was a permanent parent volunteer for his robotics team. I helped cater meals for the judges at the competitions and paid for that out of my own pocket. YOU CAN'T OUT GIVE GOD. We are not rich, but we have always had enough and we currently have no debt.
Posted by: Emmaphiladelphia | September 14, 2021 at 09:58 PM
Bill you jump about a bit and its hard to follow your now going on about I think,`the situation in Afghanistan? But your a hypocrite. A long way back in your previous post you wrote
"Some people are so disabled they do not have such a concept of freedom or liberty and those people need 24 hour a day seven day a week care in a locked facility because of mental illness developmental disabilities serious medical problems or some combination thereof."
So lettuce see; its ok to fill up the cells/wards with autistics but a similarly challenged individual that's been to Afghanistan, hit by a car,mugged, etc the cells are out of bounds. Autistics its ok to be locked upbut not the rest?. You don't want the autistics out in public just incase someone sees them and says oh what happened here? and the parent /carer replies IT WAS VACCINES as we do when anyone asks when out daily. You see autistics as some sort of sub-human commodity more humanity shown to mosquitos right Bill!.
Pharma For Prison
MMR RIP
Posted by: Angus Files | September 14, 2021 at 05:26 AM
Emma, honest question: Have you ever known personally anyone who successfully negotiated with the State for funding? It's a bit like elderly people who can't take care of themselves. Medicare will pay the cost of a nursing home (if it's a cheap home like the one my former county runs), but it won't hand a family that same amount of money to reduce the cost of home health aides.
If you know anyone who has gotten the government to give them the money instead of paying for residential care, please tell us how they did it. A lot of us would find it useful.
Posted by: TOB | September 14, 2021 at 05:11 AM
Now Fauci is claiming that when he went to school he had to be vaccinated for measles, mumps, rubella, and polio! The man's lies know no bounds. The first measles vaccine wasn't released until he was 21, and the mumps not until six years later. The first polio vaccine didn't appear until he was about 14.
Posted by: Gary Ogden | September 14, 2021 at 12:20 AM
JUST IN:
Biden requests Congress for $6.4 billion in American taxpayer money to settle 95,000 vaccine injured/autistic adults into new specially designed long term housing, including job assistance.......NOT!
American citizens need not apply:
https://www.breitbart.com/politics/2021/09/13/biden-plan-free-ride-amnesty-for-unvetted-afghans/
Posted by: Emmaphiladelphia | September 13, 2021 at 11:30 PM
Angus read the organization website "national council on severe autism" and see how some with autism need institutional care and their parents and caregivers thoughts on that and related matters. Who cares the cost! Does not the British and US Governments urinate hundreds of millions of dollars per week on an unpopular war that made things worse including more disabled people in the world from unnecessary military conflict and enabling Salafist.
Posted by: Bill | September 13, 2021 at 05:14 PM
eliminating mental hospitals?Nope and nope again Bill they just cleared them out and replaced them with autistics.. pharma AKA vaccine collateral.
Bethany is 17 years old. She is a girl who likes Bob Marley’s music, spending time with animals and being outside. Her father says she is the funniest girl he has ever met. But this teenager has not felt the sun or the wind on her face for nine months. And she rarely laughs. Instead, she is shut away in solitary confinement behind a locked door, fed three times a day through a hatch like a dangerous creature in a zoo. She is obese from inactivity and has diabetes. Her small cell is furnished with just a foam bed and chair. Sometimes she gets books or colouring materials. Other times, a television is wheeled outside the big glass window. Her father finds visiting his daughter “horrific” as he walks into the seclusion area and sees a row of rooms, often full of distressed young women. “Do you remember that scene in Silence of the Lambs when the agent Clarice Starling walks down the corridor to see Hannibal Lecter?” he asked me. “Well, it’s like that.” You might assume Beth has carried out some terrible deed to be locked up like this for the past 21 months. Even her father must kneel to speak with his daughter through the metal door’s hatch. But she has committed no crime. Instead, she is a victim of a callous state that treats a slice of society with cruelty and contempt.
For this teenage girl has learning disabilities. And like scores of others, she has been left to rot by an inadequate health service while politicians break promises to help, and bureaucrats bicker over funding people in dire need. Beth has autism, suffers extreme anxiety and cannot cope with stress – yet instead of being helped to enjoy life she is shut away in dismal seclusion. This has led to self-harm; a bit of a ballpoint pen stabbed in her arm was left there for weeks, removed only after this tragic teenager’s case was highlighted in a haunting edition of Radio 4’s File on Four. She uses ligatures made from her clothes, so staff strip off all she is wearing. The cruelty of her case spotlights shameful Westminster inertia. And, yet again, it shows how little this country cares about citizens with learning disabilities. State care problems It is seven years since events at Winterbourne View care home in Gloucestershire exposed grotesque abuse in a supposed sanctuary of state care. Ministers responded with gushing promises to get people with learning difficulties out of such assessment and treatment units, where they were being dumped for years. But for all the fine talk, little has been achieved.
http://www.beingtheboss.co.uk/a-teen-with-autism-is-locked-in-solitary-confinement-and-being-fed-through-a-hatch/
Pharma For Prison
MMR RIP
Posted by: Angus Files | September 13, 2021 at 02:32 PM
Thank you Saint Reagan and holy cronies for eliminating the mental hospitals and their equivalent for the severely developmentally disabled called "Developmental Centers" in most states. It was 1970's era legislation that got rid of this important option for families and individuals with disabilities. It was to save money and because of the disability right misguided advocacy. Screw those liberals, conservatives and libertarians and their freedom cult another reason locked state run facilities are almost non existent. Some people are so disabled they do not have such a concept of freedom or liberty and those people need 24 hour a day seven day a week care in a locked facility because of mental illness developmental disabilities serious medical problems or some combination thereof.
Posted by: Bill | September 13, 2021 at 11:35 AM
"They explained that their son, upon reaching puberty, became so aggressive that he would later cry, apologize and lock himself in his bedroom "so he could escape all triggers.""
"The Atkinsons said their son thrived at the school in the suburbs of Boston, had his medications sharply reduced and lost 60 pounds as his lifestyle became more healthy. He learned to work through his daily aggressions and handle tasks such as chores, putting simple meals together, forming relationships and going on outings. He has lived in a single-family residence and his aggressive meltdowns have been reduced to episodes that last only a few minutes, and usually only one or two times per day."
Why can't this family continue their son's care at home? The teachers/therapists obviously found a working treatment protocol. Negotiate with the State for the funding they would spend on the NY facility, and apply it to in-home therapists for their son, using the same protocols. They could even get him out on social outings/field trips and help him find work. Think outside the box. DO NOT send him to the "prison" facility. Ask Jesus to open a door. He will.
Posted by: Emmaphiladelphia | September 13, 2021 at 11:14 AM