ALBANY, N.Y. — The parents of adults with conditions such as 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 children with disabilities 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.

Joseph and Michele Atkinson of Long Island, whose son Joseph recently graduated from an adolescent program at the Judge Rotenberg Education Center in Canton, Mass., wrote a letter to Cuomo on July 13 detailing the history of their son’s conditions, which include autism, obsessive compulsive disorder, anxiety and ADHD.

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.”

After rotating through a dozen New York schools, and after it was determined that no other schools would take him, the state looked for programs in other states that would be appropriate. Michele Atkinson said their son was placed in the Massachusetts facility three years ago under a program paid for by his New York school district.

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.

After Joseph turned 21 in April — and by July was no longer considered a student — his parents said they understood that he had “aged out” and would need to be placed in an appropriate residential program in New York. But he was rejected by all residential state schools that reviewed his background, and the state informed the Atkinsons this summer that he would be placed in the most secure area of the Sunmount facility in Franklin County.

In that setting, they told Cuomo in their letter, they feared their son would be “denied an opportunity for appropriate socializing with peers” and that all of his activities would take place inside the fenced-in compound.

In contrast, at the Massachusetts school, they said had had made such progress that this year he was able to sit through an hour-long graduation ceremony and also attend his prom without incident.

After receiving notification this summer from the state Office for People with Developmental Disabilities that his school funding would end and the state would not pay for him to reside in the Massachusetts school, they received a letter informing them their child could go to the Sunmount facility or “OPWDD may not provide funding” for his continued treatment out of state.

Michele Atkinson, in a recent interview, said the family took part in a virtual tour of the Tupper Lake facility and “pretty much what we found was a compound — a prison-like facility that apparently houses disabled individuals who have been convicted of crimes like rape, arson, murder.”

“They’re mixed in the general population,” she continued. “These people could be housed with my son. … This is definitely happening to others.”

Turned away

State Assemblyman Andrew Hevesi of Queens, who chairs the chamber’s Children and Family Services Committee, is among several lawmakers who recently wrote a letter to Gov. Kathy Hochul urging her to unravel the policy. He and his colleagues contend it may violate a 1999 U.S. Supreme Court decision that entitles people with disabilities to receive care in the least restrictive and most integrated settings.

A state law enacted with bipartisan support in 2014 to further address the issue guaranteed due-process rights for children with disabilities and their families in determining their long-term care decisions, but only upon the child turning 21 or after graduating from school.

The state has recently been informing some of these parents that their funding for out-of-state treatment will be discontinued, but they can transition their child to the remote facility in Tupper Lake. Hevesi believes the agency is exploiting a specific point on the timeline — after graduation but before the person’s 21st birthday — to impose a residential placement before the activation of the due-process rights that could give their family more sway in their treatment decisions.

Lawmakers suspect the policy was put in place to reduce the state-funded cost of residential treatment by funneling New York residents from out-of-state schools and group homes into New York-run institutions.

“OPWDD seems to have found a loophole that the rights don’t kick in until they are 21, and they are using it to the detriment of these families and these individuals,” Hevesi said. “I think they’re violating their own duties and obligations.”

Donna Cinturati’s son Vincent, who has severe behavioral issues, turned 21 in July and has been receiving treatment at the same Massachusetts facility as Joseph Atkinson. He had been residing at a school for those with disabilities in Port Jefferson two years ago but had to find a new location when it closed after a half-century in operation.

Cinturati said her choices were schools in Pennsylvania, New Hampshire or Massachusetts, and she opted for the Judge Rotenberg Center because she has family who live nearby and could go to her son’s aid quickly if necessary.

Cinturati and her daughter, who is Vincent’s twin and has cerebral palsy, packed up their car on Sept. 7 to make the trek north to Tupper Lake for a tour of the facility that was scheduled for the following morning.

She said they were roughly five hours into the trip — made difficult by the fact her daughter relies on a walker or wheelchair and cannot communicate when she may need to use a bathroom — when she received an email from OPWDD informing her the tour had been canceled because they said she had rejected an offer to relocate her son there.

“I thought maybe there was a mistake, so I continued to press on,” she said.

Cinturati, a single mother who said she took a job as a school lunch attendant decades ago so she could have a schedule that allowed her to help her kids get on and off the school bus, had been scheduled to meet a staff member from the Judge Rotenberg Center outside the Sunmount facility who made the trip to assess if the facility would meet Vincent’s needs.

Instead of a tour, she said, the JRC staff member was confronted by security guards after he entered the parking lot and was allegedly told to leave immediately or they would call the State Police. Cinturati said the JRC staffer called her and cautioned that they had told him if she arrived “the same thing would happen” to her and her daughter.

OPWDD, which runs the Sunmount facility, would not offer an explanation for what happened to Cinturati and the JRC staffer.

The day before, on the long drive into the Adirondacks, Cinturati had been overcome with emotion as she navigated the isolated highways with intermittent GPS and cell service.

“There’s just trees and roads, and it’s like, ‘If something happens to me on this stretch of nothingness,'” she said. “And then I started to cry. I’m like, ‘If my son is up here, what am I supposed to do in the winter? I’ll never see him.'”

Cinturati also questioned whether her son would regress in the institutional setting, noting his behavioral issues cause him to pull at anything that seems out of place — a piece of wallpaper or a wire sticking out of an outlet — and that he doesn’t recognize boundaries and will hug people uncontrollably.

At the Judge Rotenberg Center, which has been scrutinized for its use of a controversial but court-approved program of shock therapy, her son has been removed from all of his behavioral medications and “he’s happy,” she said. He son lives in a residential group home in the community and is bused to the school for his programs, she said.

‘Hurting families’

Last week, OPWDD officials provided a response to what they described as a legal process that prevents them from providing funding for out-of-state care at a certain point, leading to their decisions to direct parents to relocate their children to the Tupper Lake facility or risk losing funding for their treatment.

“OPWDD is committed to identifying appropriate services to meet every person’s needs and to creating a person-centered plan to support them in New York once they complete their education in another state,” the statement said. “OPWDD works closely with each student and their family to identify an appropriate in-state placement that will meet their specific needs to ensure that the student can return to (New York), their official place of residency, to receive appropriate adult services at the time they complete their education (at the end of the school year in which the student reaches the age of 21).”

The agency also said it has “limited authority, on an emergency basis,” to fund continued placement at an out-of-state school once a student has graduated. The agency said that can only take place until an “appropriate adult placement” in New York is available.

If the student declines to accept the New York placement, OPWDD has no authority to fund their services out of state, the agency added.

The agency also said that the “due process rights do not apply to residential school students who are offered placement in the OPWDD system when such a placement is available to the student at or before the time of their graduation.”

A spokeswoman for OPWDD did not immediately respond to a question regarding how many parents of out-of-state students have received letters stating “the school district and/or department of social services funding will cease at the end of the school year and that OPWDD may not provide funding” for their child to attend a program or school in another state.

Some lawmakers have said that based on the projected savings that Cuomo administration had previously anticipated saving from cutting out-of-state funding, the policy may have impacted hundreds of individuals. The agency has been seeking to move all out-of-state clients back to New York facilities, not just those at the Massachusetts school, according to people with knowledge of the matter.

Hevesi and four other members of the Legislature signed the letter that was sent to Hochul recently urging her to intervene. The others are Assemblyman Thomas J. Abinanti, chair of the Committee on People with Disabilities; Assemblyman John McDonald, chair of the Committee on Oversight, Analysis and Investigation; state Sen. Samra Brouk, chair of the Committee on Mental Health; and Sen. John W. Mannion, chair of the Committee on Disabilities.

“We’re hurting families in the short-term,” Hevesi said. “In the longer term, these individuals — some of them are going to regress and need more expensive services, and it’s hurting their families. None of this makes sense.”

© 2021 Times Union
Distributed by Tribune Content Agency, LLC

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