TUPPER LAKE – Controversial actions by the State Bureau for People with Developmental Disabilities, reported in the Albany Times Union last week, resulted in OPWDD returning due procedural rights to a few parents of children with developmental disabilities.
Last week, the Times Union unveiled a loophole in the law that allowed OPWDD to replace the right of parents to have a say in where their adult children with developmental disabilities after their 21st with autism or serious behavioral problems were told by OPWDD that they were Judge Rotenberg Educational Center, a special school in Massachusetts where parents say their adult children were successful, must leave to move to Sunmount.
Parents feared this would stop their children’s progress and put them in danger, through developmental regression or placement in an institution with people charged with violent crimes.
Following opposition and advocacy from parents, several state legislatures, and the editorial staff of the Albany Times Union, the OPWDD is giving these families their rights to due process. The change made the parents happy that their advocacy worked.
But these are just a few of the families affected by this loophole.
“Due procedure” right
Have parents of adult children in the OPWDD system “Proper process” Rights that occur when their children turn 21. These allow parents or guardians to challenge OPWDD about the appropriate living environment for their family member, to receive a hearing, or to request a judicial review.
But a law passed by former Governor Andrew Cuomo in 2014 to ensure these options left a loophole for parents to circumvent these rights in the days between graduation and birthdays.
This loophole was used to bring in graduates from extra-state schools before 21 returning to the New York-operated OPWDD facilities against their parents’ wishes.
Your enrollment in these other state schools is paid for and arranged by their home school districts in New York. OPWDD said when they graduate and turn 21, the state will no longer be able to fund long-term care outside of the state because they are no longer “Students.”
By having these individuals after graduation and before their 21st
Essentially, if their birthday is after graduation and before the new year, they can be postponed before due process rights take effect.
Parents in this situation must make a decision – allow the state to move their child where the OPWDD chooses, or lose their state support for their child’s long-term care.
OPWDD did not answer how many people are affected.
State lawmakers on disability, family, and mental health legislative committees – including Reps Andrew Hevesi, D-Queens, Thomas Abinati, D-Pleasantville, John McDonald, D-Cohoes, and State Senators Samra Brouk, D-Rochester, and John Mannion, D-Syracuse – recently wrote a letter to Hochul saying they are concerned about people who have moved. They are urging them to stop all moving until the state can guarantee parents’ rights to due process and that they restore state funding to families who want their child to stay in an extra-state school.
The letter states that these are due process rights “Critical to avoid improper placement that disrupts current treatment, private life and familiar surroundings, which can lead to self-harm, improper or excessive medication, or even abuse or death.”
How is Sunmount involved?
If a graduate returning to New York is rejected by other state schools because of their background or high needs, they could be sent to Sunmount.
“Often the OPWDD is able to provide support to the person in a residential group within the chosen community.” OPWDD said in a statement. “However, if they need a higher level of support than a group home can provide, we may offer them an option at Sunmount that is equipped to provide high-need transitional care for people who need additional support and assistance, before they can thrive in a community -based attitude. “
In their letter to Hochul, state lawmakers said they had recently heard of several cases of OPWDD moving developmentally disabled people to intensive care centers like Sunmount in this situation.
Lawmakers told the Times Union newspaper that the state did not have enough centers for high-demand customers.
The legislature considers Sunmount to be “inappropriate” Attitude for these people.
“As we understand it, the facility is fenced, there are no 24/7 video monitors, and there may be a lack of clinical and direct nursing staff … that your child needs.” wrote the legislature.
The parents quoted in the first Times Union article see Sunmount as a prison rather than a health center for their children.
A portion of Sunmount’s population are developmentally disabled people who have been charged with crimes ranging from arson to assault and deemed incapable of litigation. OPWDD declined to disclose what percentage of Sunmount’s population has been charged with a crime.
These residents often live in the Sunmount Center for Intensive Care, a fenced-off area for people who are at higher risk to public safety.
Tupper Lake Mayor Paul Maroun, who sits on the Sunmount Board of Directors, said he feels Sunmount has one “Bum-Rap” in the Times Union article. He said the article did not mention the woodworking shop, auto repair shop, or leisure centers inside and outside the fenced areas and found this disparaging to employees who did nothing wrong.
“You deserve better” he said.
He acknowledged that Sunmount is not your average center for people with developmental disabilities. Focusing on people deemed incapable of negotiating means that residents there are sometimes more violent than at other OPWDD locations.
“You always have to be on your guard, that’s for sure.” said Maroun.
Sunmount is one of two OPWDD facilities that offer institutional care – as opposed to home or community care. The other facility is Valley Ridge in Norwitch.
But that’s not the only purpose of Sunmount.
“There are also several houses on Sunmount’s premises that offer an opportunity for community-based living while also providing the intense support the person needs.” OPWDD said in a statement. “Depending on the individual’s needs … they would also be granted access to the community to ensure that they are integrated into the larger community.”
But one family in the Times Union article said they had been told their son was leaving “The safest area” from Sunmount because it has to be looked after intensively.
“On my tours through Sunmount and the cast there, I am convinced that they are doing a really good job meeting the needs of local customers and protecting them.” said Maroun.
Still, parents were horrified by what they saw and heard about Sunmount – fences, sexual predators, and an environment they didn’t believe would be beneficial to their child’s mental and physical health.
Maroun said sex offenders are a cause for concern in any institutional setting, and also mentioned hospitals and nursing homes.
Parents were also concerned about Sunmount’s isolation from the majority of the state’s population, which could make it difficult to visit.
The legislature called for the repatriation of foreign graduates to New York and the circumvention of parental rights to the attempt to save money or not to send them out of the state.
“We know that placement in certain facilities is more cost-effective, but when these clients’ behavior regresses, it can lead to permanent physical and psychological injury.” They write.
They said improper placement means a developmentally disabled person is more likely to be drugged, injured, or violent and ended up in the criminal justice system.
OPWDD declined to say if this was a cost-saving move.
“At a certain time, New York state taxpayers cannot send money out of the state if we have facilities in the state that do a very good job with customers.” said Maroun.
OPWDD says it works with families to find the best ways for their children with developmental disabilities.
“OPWDD is committed to finding appropriate services to meet each person’s needs and creating a person-centered plan to support them in New York once they have completed their education in another state.” OPWDD communications director Jennifer O’Sullivan wrote in a statement. “OPWDD works closely with each student and their family to find a suitable state internship that suits their specific needs to ensure that the student can return to NYS, their official residence, for appropriate services at the time of graduation for adults to receive their education (at the end of the school year in which the student turns 21). “
OPWDD says its procedure is legal. But in their letter, state lawmakers say they believe these acts may violate a 1999 U.S. Supreme Court ruling in which the court ruled that people with developmental disabilities were entitled to the least restrictive care and in the community should be integrated to avoid this “Unjustified exclusion”.
In the meantime, said Maroun, everyone is waiting to see what Hochul will do.