NY Parents Against 'Prison-Like' Facility for ASD Clients

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ASPartOfMe
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13 Sep 2021, 7:59 am

Associated Press

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Parents of adults with severe autism and other disabilities say New York officials are threatening to revoke funding for their children's long-term care at out-of-state care centers unless they agree to send their children to a secure, in-state facility.

Some parents believe they have no alternative but to send their adult children to the Sunmount Developmental Center in Franklin County in the Adirondacks, the Times Union of Albany reported Sunday. They describe the facility as remote and prison-like.

A group of state lawmakers recently asked Gov. Kathy Hochul to end the policy, which they say was put in place by former Gov. Andrew Cuomo in an apparent cost-saving move. The lawmakers, including Democratic Assemblyman Andrew Hevesi of New York City, say the policy may violate disabled people's right to receive care in the least restrictive setting, which was guaranteed under a 1999 U.S. Supreme Court ruling.

A 2014 state law also guaranteed due-process rights for disabled children and their families in long-term care decisions, when the child turns 21 or graduates school.

In a response Friday, the state Office for People with Developmental Disabilities, or the OPWDD, said a legal process prevents the agency from providing funding for out-of-state care at a certain point, and it has to direct parents to relocate their children to the Sunmount facility or risk losing funding for their care.


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16 Sep 2021, 9:22 am

They would rather have their kid at the Judge Rotenberg Center
End Cuomo’s indifference toward disabled New Yorkers
Michele Atkinson is a special education teacher, and Joe Atkinson is an IT risk management specialist. They live in Holtsville, N.Y.

Quote:
Growing up on Long Island, Joseph’s disabilities sparked constant outbursts — from violent property destruction to violence directed at teachers, other children and at us. For years, his daily life included hitting, kicking and punching, and breaking computers, windows and cell phones.

When Joseph came home from school, he went straight to his bedroom to avoid any triggers. We covered his window with plexiglass to keep him safe, and locked his door to prevent him from attacking us when he was upset. For years, my husband and I couldn’t leave our house at the same time due to Joseph’s unpredictability.

Joseph has seen psychologists, psychiatrists, neurologists, audiologists and holistic specialists. He’s been on 15 different medications since age 12, often with terrible side effects. We’ve tried special diets, sports, social skill groups, sensory devices and more. Yet all of these efforts brought little success.

Then New York placed Joseph at a Massachusetts-based facility where his life changed. The Judge Rotenberg Educational Center (JRC) utilizes an Applied Behavioral Analysis (ABA) approach based on positive reinforcement, implemented by trained staff, and overseen by board-certified behavior analysts. The staff creates data-driven behavior plans and adjusts them as needed. For safety and staff training, JRC has cameras at the school and at Joseph’s house in the community where he lives with peers. He has a team of professionals helping him succeed, and has made friends for the first time in his life.

Joseph today is down to one low-dose medication and has lost excess weight related to his former treatment plan. Despite all the odds, he is learning to manage his violent impulses and interact with others constructively. He is safe, happy and doing well. He recently put on a tuxedo and attended prom; later, he sat through his entire, hour-long graduation ceremony. Our family celebrated at home with 15 guests, and Joseph ate dinner with everyone.

Yet days before Joseph’s June 25 graduation, New York’s Office for People With Developmental Disabilities “offered” Joseph a placement back in-state, despite available options at JRC. The agency that’s supposed to help people like Joseph get the services they need to manage their disabilities gave us only two weeks to consider. When we declined, New York cut off Joseph’s funding.

The placement that New York proposed is called Sunmount Developmental Center — a prison-like state institution surrounded by a high fence located far upstate. Unlike Joseph’s group home in Massachusetts, Sunmount’s family visitations are confined to common spaces, denying us the opportunity to know where he would live or who he’d live with. The home visits he currently enjoys are simply forbidden.

Worse yet, Sunmount has residents with violent criminal backgrounds mixed with the wider population. There are no cameras to ensure safety, and limited opportunities to leave the facility. Sunmount doesn’t offer the Applied Behavioral Analysis that has worked so well for Joseph. The problematic behaviors handled professionally at his current facility would be met with restraint, seclusion and isolation.

From what we were told, the people responsible for facilitating Joseph’s well-being never even bothered to assess whether Sunmount was appropriate for him before pushing him to go there.

New York State’s callous disregard for disabled citizens like Joseph prioritizes nothing other than cutting costs. But Joseph’s life matters, and he deserves respect. This cold-hearted policy — a lesser-known legacy of Gov. Cuomo — should never have been pursued. Joseph should remain at the one facility in which he has flourished, and Gov. Hochul should see to it.

Not denying the place New York State wants to send Joseph is bad but the description of The Judge Rotenberg Center as a wonderful place of positive reenforcement????.
There are two possible explanations. They did torture him and not told the parents.

The Atkinson’s are middle class people from a largely white neighborhood. As such they do not fit the typical demographic of a Judge Rotenberg Center “resident”. I suspect what is going on here is the “good ABA” is reserved for children of middle class white people. Maybe thats racism or classism, or maybe they fear professional peoples means and ability to use the media.

Another issue is like the Atkinson’s ABA defenders love to point out how much better ABA is then medications regimes. Maybe a lot of the claims of miraculous improvements claimed are not happening because of ABA but a combination of maturity and being weened off of medications.


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17 Sep 2021, 4:58 am

In any case, it's very disturbing to hear that parents are being compelled to send their severely disabled kids to a place like "Sunmount Developmental Center." I thought gigantic prison-like warehousing institutions like that were a thing of the past??? I thought smaller facilities, with greater family involvement encouraged, were now the thing?

Also, one thing that seems a little odd here is that both news stories feature just one individual family. Other families are vaguely referred to, but none others are quoted individually. Also, no organizations for parents of autistic children are mentioned. We should probably do a little more research....

EDIT: Here's the letter from several New York State Assembly members to our new governor.


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17 Sep 2021, 6:40 am

NY Official Visits Canton's Judge Rotenberg Educational Center

Quote:
New York Assemblyman Andy Hevesi visited Canton's Judge Rotenberg Center Wednesday on behalf of Joseph Atkinson III, a resident who New York's Office for People with Developmental Disabilities (OPPD) has been seeking to transfer back to his home state for treatment now that he is 21.

In an interview Thursday morning, Hevesi called his visit to the Judge Rotenberg Center "an incredible experience."

"I thought that the facility was in outstanding shape," he said. He pointed out that there were game rooms, computer labs and other activities that residents can utilize as rewards on a point system for positive behavior modification.

"They earn points for amending behaviors and for showing less aggressive behaviors around other people," Hevesi added.

Hevesi said he spoke briefly with Atkinson and met other residents who also are from New York.

Hevesi said some of the New York residents he met were working or receiving job training at the facility.

Hevesi said he was aware of the criticism against the Judge Rotenberg Educational Center for its use of the Graduated Electronic Decelerator (GED), which allows staff to administer electric shocks to residents via a remote control device to correct aggressive behavior.

Hevesi said there has been movement since Atkinson's story has been made public to work toward a resolution with the OPWDD and New York officials to keep residents where they are receiving appropriate care. He noted that New York does not have a comparable facility to the Judge Rotenberg Educational Center.

"Now the OPWDD is working with officials to resolve this issue for these families," he said. "We are working with the new administration in New York, which is more amenable to work in collaboration with us and the families. I expect progress relatively soon."

Part of the problem, he explained, was that under the previous administration of Gov. Andrew Cuomo, "the system underfunded programs for people with developmental and intellectual disabilities."

"Now we don't have enough beds in New York," he said.

The state does provide funding for some students with disabilities to receive treatment out-of-state, Hevesi noted.

"But you have got to be careful, because there are different funding streams for different disabilities," he added.

History of abuse at Sunmount Developmental Center overlooked.
Quote:
There have been cases of abuse reported at Sunmount Developmental Center in Tupper Lake, New York that have gone unsolved over the years. Abuse is a contentious issue. In many cases, cases of abuse go unsolved. Sunmount Developmental Center is no exception. It was not all good with parents of the residents that resided in this institution.

Sunmount Developmental Center suffers from a high amount of injury from staff onto residents. Staff often assaults the residents that live here. There is also a high injury rate amongst residents. Many residents aren’t adequately fed. The mentally and physically disabled go through enough on their own.

In the 1970s, a handful of cases regarding abuse appeared in newspapers such as Rochester Times, The Tribune, Buffalo Times, and Watertown Daily Times (Watertown Daily). Parents raised concern about questionable treatment practices on residents.

During an interview with Watertown Daily Times in June 1973, former resident John Boyer recalled the only marked abuse he saw was when he lining up with his ward mates to get their teeth brushed. “When they'd line us up to brush our teeth. If anybody was talking, the attendant would come down the line slapping us all in the face."

The routine punishments consisted of "walking the halls" by having the residents walk in a long continual line about the wards until they were quiet. Attendants would get the noisy residents "walking the halls" by having the residents walk in a long line around the wards until they were quiet. This way attendants could assure residents kept quiet.

John Boyer witnessed residents being straight-jacketed to air heaters along ward walls. Slaps to the face occurred on a monthly basis. Dental care was poor and skin infections were rampant.

Sunmount Developmental Center resident Eddie Adkins was set upon by several staff members after he grew upset that he was not allowed to go to the bathroom. A melee soon ensued by four state four state employees punching Eddie Adkins while he was sitting on a couch.

A deaf resident nearby told state investigators that he saw four state employees punching Eddie Adkins while he was sitting on a couch. He was so disturbed that he turned his hearing aid off during the melee. The assault took place in October 2011 when the staffers took down a male resident in the dining hall.

Two former employees of the Sunmount Developmental Center were sentenced to jail stemming from an October 2013 cover-up on the date of December 6, 2016. Jessica Rice and Suzanne Decheine assaulted an 18-year-old resident and gave him a head injury, which resulted into a seizure and a concussion. Both Jessica Rice and Suzanne Decheine covered this up from their superiors.


It is infuriating that the Judge Rotenberg torture center is getting all this undeserved positive publicity. In America these days it has be good vs evil, that both choices are really bad is seemingly beyond the ability of most to process.


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17 Sep 2021, 12:09 pm

Is there anyone here who has a Facebook account and is public about autism? If so, please contact Autistic Self-Advocates of New York City (ASANYC) and call their attention to this thread.

ASANYC used to be affiliated with ASAN but hasn't been for at least the past two years. I've never contacted them myself, because their one and only point of public contact is a Facebook group and I'm not on Facebook. (Apparently they once had something on Reddit, but that no longer exists.)


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17 Sep 2021, 12:18 pm

If you live in New York State, please contact your NY State Assembly member and NY State Senator about this matter. Find your NY State Assembly member here and find your NY State Senator here.


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carlos55
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17 Sep 2021, 12:52 pm

ASPartOfMe wrote:
Associated Press
Quote:
Parents of adults with severe autism and other disabilities say New York officials are threatening to revoke funding for their children's long-term care at out-of-state care centers unless they agree to send their children to a secure, in-state facility.

Some parents believe they have no alternative but to send their adult children to the Sunmount Developmental Center in Franklin County in the Adirondacks, the Times Union of Albany reported Sunday. They describe the facility as remote and prison-like.

A group of state lawmakers recently asked Gov. Kathy Hochul to end the policy, which they say was put in place by former Gov. Andrew Cuomo in an apparent cost-saving move. The lawmakers, including Democratic Assemblyman Andrew Hevesi of New York City, say the policy may violate disabled people's right to receive care in the least restrictive setting, which was guaranteed under a 1999 U.S. Supreme Court ruling.

A 2014 state law also guaranteed due-process rights for disabled children and their families in long-term care decisions, when the child turns 21 or graduates school.

In a response Friday, the state Office for People with Developmental Disabilities, or the OPWDD, said a legal process prevents the agency from providing funding for out-of-state care at a certain point, and it has to direct parents to relocate their children to the Sunmount facility or risk losing funding for their care.


The press article is slightly poorly worded maybe they should have just reported parents of severely autistic kids are being told New York officials are no longer funding out of state care centres and now have to send their kids to a secure in state facility, otherwise parents will have to pay for care themselves.

There kind of decisions are usually for financial cost cutting reasons and happen in the UK NHS all the time, hospitals close or treatment services get moved so elderly people have to travel miles for stuff they had locally, all in the name of political games, financial targets and cost cutting.

Unfortunately, all autistic people who are not completely independent have to join the ranks of the bottom of society in being hostages to government decisions, welfare rules and the financial balance sheet of the country / state they live in.

Which is why I believe autistic people in general are better served by aiming to better themselves through treatment & cure than remaining hostages to others and expecting breadcrumbs in return.

Quote:
Growing up on Long Island, Joseph’s disabilities sparked constant outbursts — from violent property destruction to violence directed at teachers, other children and at us. For years, his daily life included hitting, kicking and punching, and breaking computers, windows and cell phones.


Maybe the issue here is the horrific symptoms this young man had & the tens maybe hundreds of thousands of others like him out there that unfortunately hardly get reported or worse suppressed. How to help them and families when clearly they cannot stay with their parents.


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17 Sep 2021, 7:21 pm

Mona Pereth wrote:
If you live in New York State, please contact your NY State Assembly member and NY State Senator about this matter. Find your NY State Assembly member here and find your NY State Senator here.

There are two bad options, what would I lobby for?

If you have an idea perhaps you could lay it out in a change.org online petition.


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17 Sep 2021, 9:29 pm

ASPartOfMe wrote:
Mona Pereth wrote:
If you live in New York State, please contact your NY State Assembly member and NY State Senator about this matter. Find your NY State Assembly member here and find your NY State Senator here.

There are two bad options, what would I lobby for?

If you have an idea perhaps you could lay it out in a change.org online petition.

What should be lobbied for is more and smaller group homes -- and in many more locales, so parents/families can conveniently visit their kids -- and with no restrictions on the rights of parents and families to visit their kids (except in cases where a family member is known to have seriously abused the kid).

I thought it was well-established, decades ago, that big prison-like institutions for developmentally disabled people are NO GOOD, period, end of story, ESPECIALLY when they are located in the middle of nowhere. I'm shocked that a place like Sunmount even exists in this day and age.

I don't have the spoons to manage a change.org petition on top of all the other things I'm doing these days. I hope that someone at either ASANYC (mentioned in an earlier post above) or the Self-Advocacy Association of New York State (for people with developmental disabilities of any kind, not just autistic people) can coordinate something. I sent email to the latter group earlier today.


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17 Sep 2021, 9:40 pm

carlos55 wrote:
There kind of decisions are usually for financial cost cutting reasons and happen in the UK NHS all the time, hospitals close or treatment services get moved so elderly people have to travel miles for stuff they had locally, all in the name of political games, financial targets and cost cutting.

Unfortunately, all autistic people who are not completely independent have to join the ranks of the bottom of society in being hostages to government decisions, welfare rules and the financial balance sheet of the country / state they live in.

Which is why I believe autistic people in general are better served by aiming to better themselves through treatment & cure than remaining hostages to others and expecting breadcrumbs in return.

A focus on "cures" is problematic for many reasons that pertain not just to autism but to many other disabilities as well. See Disabled People’s Feelings About Cures Are More Complex Than You May Think by Andrew Pulrang, Forbes, Sep 7, 2020.

What's needed, instead, is a stronger disability rights movement.


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carlos55
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18 Sep 2021, 10:12 am

Mona Pereth wrote:
ASPartOfMe wrote:
Mona Pereth wrote:
If you live in New York State, please contact your NY State Assembly member and NY State Senator about this matter. Find your NY State Assembly member here and find your NY State Senator here.

There are two bad options, what would I lobby for?

If you have an idea perhaps you could lay it out in a change.org online petition.

What should be lobbied for is more and smaller group homes -- and in many more locales, so parents/families can conveniently visit their kids -- and with no restrictions on the rights of parents and families to visit their kids (except in cases where a family member is known to have seriously abused the kid).

I thought it was well-established, decades ago, that big prison-like institutions for developmentally disabled people are NO GOOD, period, end of story, ESPECIALLY when they are located in the middle of nowhere. I'm shocked that a place like Sunmount even exists in this day and age.

I don't have the spoons to manage a change.org petition on top of all the other things I'm doing these days. I hope that someone at either ASANYC (mentioned in an earlier post above) or the Self-Advocacy Association of New York State (for people with developmental disabilities of any kind, not just autistic people) can coordinate something. I sent email to the latter group earlier today.


Smaller homes are ideal in principle and yes more is needed, this is discussed in this article by NCSA

https://www.ncsautism.org/blog//i-visit ... ty-housing

The main problem as always is cost imagine more homes is more real estate and land which also mean more round the clock carers/ supervisors. Does your local authority or town have this money on top of everything else inc care of elderly people probably not.

Unfortunately autism functioning is heterogeneous and care of those with brain disorders is the most expensive of all disabilities.

Autistic people living semi independently is not so straight forward when you get down the spectrum ladder below aspies.

Some have the living skills of a 3 year old needing 24/7 care those with living skills higher up may not eat or do essential living skills unless prompted, even those with slight ID need someone looking out for them as there are plenty of predators around.

I’ve seen many autistic people loose all their money because a stranger asked to borrow money and they just gave their bank card away for their ac to be emptied.

Small things like that require someone to be paid to deal with all this.

The easy tendency of any gov is to cut costs and throw people together as it’s easier and cheaper this can be seen in prisons and healthcare as mentioned.

The economy of both US and UK/Europe is on the long term decline, (it’s hardly disputed anymore). Those most vulnerable and in need of gov services and help will end up being effected the most by this fact going forward.


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18 Sep 2021, 11:46 am

First off, one of the better choices for advocacy would be Disability Rights New York: https://www.drny.org/

There was a similar situation in Florida and DRF and others, conducted an investigation and forced the institution to close down. I never saw it, but I saw and heard from the people who were discharged from there, or who participated in the investigation. It took many years and consistent effort to get it closed down.

I have had several clients who have a level of difficult behaviors (and more critically dangerous to themselves and others) that I think most people on WP are not familiar with. These people were unable to be handled even in intensive behavior group homes. The small, specially trained group homes. Getting them served and with services to give them a reasonable quality of life, is more complex that most people can imagine. And there are many failures along the way.

Florida also does not want to pay for out of state treatments. But there is a procedure to request it. Approval is given only for a month or two at a time, and then the evaluation procedure has to be re-done completely.

These situations are heartbreakingly tragic. There are no cookie-cutter answers. My heart still bleeds for some situations.


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18 Sep 2021, 1:33 pm

blazingstar wrote:
I have had several clients who have a level of difficult behaviors (and more critically dangerous to themselves and others) that I think most people on WP are not familiar with. These people were unable to be handled even in intensive behavior group homes. The small, specially trained group homes. Getting them served and with services to give them a reasonable quality of life, is more complex that most people can imagine. And there are many failures along the way.


Its normal for many to criticise and question why these large mental institutions exist these days, but then we have to remember the people there, many are violent, suicidal & self harming & just impossible for ordinary parents / carers to look after.

These people have a wretched life drugged up and left to rot, serving a life sentence for no crime they ever committed and forgotten about by society and ND advocates alike.

https://www.bbc.co.uk/news/health-48369500


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18 Sep 2021, 3:25 pm

carlos55 wrote:
The economy of both US and UK/Europe is on the long term decline, (it’s hardly disputed anymore). Those most vulnerable and in need of gov services and help will end up being effected the most by this fact going forward.

Hmm, I actually don't agree with this. Depends how "long term" is "long term." As technology continues to develop, more and more people -- even some rich people -- will eventually recognize the need for a radical reorganization of the economy. This will likely take longer than many artificial-intelligence proponents believe, and things will likely get worse before they get better, but, worldwide, things probably WILL eventually get a lot better in the long run (IF we don't nuke ourselves first, of course, and IF the US populace comes to its senses about climate change soon enough).


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Last edited by Mona Pereth on 18 Sep 2021, 3:56 pm, edited 1 time in total.

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18 Sep 2021, 3:40 pm

blazingstar wrote:
First off, one of the better choices for advocacy would be Disability Rights New York: https://www.drny.org/

I just now looked at their website. They don't appear to be an activist group or a lobbying group, but rather a charity (largely government-funded) that provides various legal services and bureaucracy-navigation services for disabled people.

They do look like an excellent resource in general, but not what I'm looking for at the moment. Right now I'm interested in disability-rights activist groups and lobbying groups.

But thanks for calling them to my attention. I'll add them to the list of "local services" that I eventually plan to put on my website.


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ASPartOfMe
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18 Sep 2021, 4:24 pm

carlos55 wrote:
Mona Pereth wrote:
ASPartOfMe wrote:
Mona Pereth wrote:
If you live in New York State, please contact your NY State Assembly member and NY State Senator about this matter. Find your NY State Assembly member here and find your NY State Senator here.

There are two bad options, what would I lobby for?

If you have an idea perhaps you could lay it out in a change.org online petition.

What should be lobbied for is more and smaller group homes -- and in many more locales, so parents/families can conveniently visit their kids -- and with no restrictions on the rights of parents and families to visit their kids (except in cases where a family member is known to have seriously abused the kid).

I thought it was well-established, decades ago, that big prison-like institutions for developmentally disabled people are NO GOOD, period, end of story, ESPECIALLY when they are located in the middle of nowhere. I'm shocked that a place like Sunmount even exists in this day and age.

I don't have the spoons to manage a change.org petition on top of all the other things I'm doing these days. I hope that someone at either ASANYC (mentioned in an earlier post above) or the Self-Advocacy Association of New York State (for people with developmental disabilities of any kind, not just autistic people) can coordinate something. I sent email to the latter group earlier today.


Smaller homes are ideal in principle and yes more is needed, this is discussed in this article by NCSA

https://www.ncsautism.org/blog//i-visit ... ty-housing

The main problem as always is cost imagine more homes is more real estate and land which also mean more round the clock carers/ supervisors. Does your local authority or town have this money on top of everything else inc care of elderly people probably not.

Unfortunately autism functioning is heterogeneous and care of those with brain disorders is the most expensive of all disabilities.


The main roadblock against smaller group homes in nice neighborhoods is NIMBY which is shorthand for "Not In My Backyard".

People do not want "those people" living next to them "lowering property values", "menacing their children". Suburban politicians know that if they do not oppose "those people" moving in they will be voted out of office.


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