Parents of profoundly disabled children turning 21 say they are being forced by New York state to send their kids to institutions, including Sunmount in the Adirondacks, rather than allowing them to stay in the specialized out-of-state facilities where they have lived for years.

The change stems from what parents and some lawmakers are calling a loophole in the law that will allow the state to save money.

“Ritchie," who doesn’t want his last name or the name of his child to be used, told Capital Tonight that his son has been thriving at the Judge Rotenberg Center (JRC) outside of Boston for years. But because his son is a few weeks away from turning 21, Ritchie is concerned that New York state will cut off his son’s funding, take him out of JRC and send him to a facility that’s more prison than treatment center.

“Normally, one would celebrate their child turning 21. In our case, it’s cause for a fright, a cause for alarm. Turning 21, for some reason, OPWDD (the Office of People with Developmental Disabilities) believes that there is a magic wand that will somehow erase a lifetime of disability,” Ritchie said.

Before attending JRC, Ritchie said his son, who is severely autistic, spent “a lifetime of horror, filled with aggression, self-injury and running away.”

“For us, our son turning 21 unleashes a world of frightening uncertainty,” he said.

No residential programs in New York state have the capacity to take Ritchie’s son, but according to Ritchie, he is thriving at JRC.

There are about 80 such families from New York who send their children to JRC.

A bill sponsored by state Assemblyman Thomas Abinanti and state Sen. Cordell Cleare (A8486B/S8355B) would ensure parents of children who are about to “age out” of coverage will be protected.

The bill has moved in the Assembly, but not in the Senate where it sits in the Committee on Disabilities, chaired by Sen. John Mannion.

There is a contingent in the disability-rights community that has questioned the Abinanti-Cleare bill. This group is concerned that if the state continues paying for these 80 or so families to send their children to expensive out-of-state facilities, there won’t be the political will or money to fix the systemic issues that are plaguing New York’s own programs for the disabled.

“New York state has not made the investment in the schools that are necessary to support those students and that is part of what’s going on right now,” said Mike Alvaro, president and CEO of the Cerebral Palsy Association of New York State. “We have a new commissioner and they’re taking a look at exactly how do we do this to support the state system and make sure the state can handle and bring back students so they can be closer to their families.”

Cost is one part of the issue.

New York state sets the tuition rates for its own in-state system of residential programs, but out-of-state programs may charge New York whatever they want. Compounding the issue, is that after a child turns 21, federal Medicaid matching funds disappear.

Sen. John Mannion sent the following statement to Capital Tonight, mentioning OPWDD’s decision to grant emergency funding to JRC families:

“I am incredibly grateful and supportive of OPWDD’s decision to grant emergency funding for the JRC families so their children will remain in their current placement,” he said.

Unfortunately, the families who send their children to JRC are not aware of this emergency funding.

“I have no knowledge of this whatsoever and no other parent has mentioned this. We have received no paperwork,” Ritchie told Capital Tonight.  “This is the first time I’m hearing this.”

According to a JRC spokesman, while there have been discussions with OPWDD about this grant funding and draft language has circulated back and forth, nothing has been resolved, which is why the parents are unaware of the possibility.

According to the JRC, OPWDD has floated the idea of a one-year extension for the families who have children aging out of JRC. The spokesman credits Assemblyman Tom Abinanti for pushing for the extension.

But in an email, OPWDD backed-up Mannion’s statement. 

“OPWDD has been working in good faith with JRC representatives to ensure emergency funding for 2022 graduates and they were made aware last week that emergency funding would be offered. Emergency funding is used to maintain a person at their residential school on an emergency basis when appropriate adult services are not available in NY before the individual completes their education. This emergency funding will continue until OPWDD has identified an appropriate and available adult opportunity for the individual. “

But according to Ritchie, even if his family is eligible for the OPWDD emergency funding, it won’t solve the underlying issue of where to place his permanently and profoundly disabled son.

“If this (grant funding) is true, it’s great; but we still need to have legislation that will make this due process law a permanent reality,” said Ritchie. “The key is that Sen. Mannion has the power to change the lives of these young people and he’s choosing not to.”

Mannion told Capital Tonight that he’s committed to people with disabilities.

“I took on the difficult task of chairing the Disabilities Committee because I care deeply about the well-being of every child and every family facing these challenges,” he said in an emailed statement. “I respect and understand that families would move heaven and earth to ensure their child is well cared for and living their lives to the fullest because I would do the same for my own family.”

According to the office of bill sponsor Cordell Cleare, the bill is considered a session priority for the senator.

The bill is still being negotiated with stakeholders and OPWDD. There is a chance that it also may pass into the Senate Rules Committee, bypassing the Disabilities Committee, in an end-of-session maneuver.

According to OPWDD, the agency has limited authority, on an emergency basis, to fund continued placement at the individual’s school, but only until an appropriate adult placement in New York state is available.

“OPWDD is committed to identifying appropriate services to meet every person’s needs and to creating a person-centered plan to support eligible adults in New York once they complete their education," the agency said. "Student placements in out-of-state residential school programs are arranged and funded by the local school district, not OPWDD. 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 NYS, 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 final day of the legislative session is June 2.