Autistic Fair Lawn Man Could Lose Home
Scott Feldman may not be able to afford to keep his house because of changes to the state program that made it feasible for him to buy the home nearly four years ago.
While many autistic adults either live with family or in group homes for the developmentally disabled, an innovative state program he participated in allowed him to buy his own house, right across the street from his childhood home on Fair Lawn's Van Duren Avenue, where his mother still lives.
Feldman has participated in the state Division of Developmental Disabilities' (DDD) self-determination program for years. He was able to buy his house because the program arranged 1 percent interest mortgage and paid for many living expenses, including property taxes. The mortgage is in Scott's name and he pays it with Social Security from his deceased father, as he is unemployed.
All that may be coming to an end in a few weeks. The DDD sent a letter to Feldman December 31 stating that they would be ended funding for services that are not in compliance with Medicaid rules as of February 1.
"These reforms are necessary to ensure the state can maximize the receipt of federal revenue and enhance community supports for individuals with intellectual and other developmental disabilities resulting in meaningful system improvements for all," DDD Assistant Commissioner Elizabeth Shea wrote in a letter to Scott.
Emily Feldman, Scott's 70-year-old mother and a retired teacher, said they wouldn't be able to afford the property taxes on the house without the state's help.
"I thought this was the place he would live for the rest of his life," she said. "If I were to die tomorrow, he wouldn't have a place to live."
Scott, who understands times are tight but doesn't even know he's at risk of losing his home, asked his mom if he would have to beg for money in the street with a cup.
"I don't want him to know how bad it is," Emily said.
The self-determination program was started as a pilot program by the DDD under Gov. Christine Todd Whitman in the '90s, giving participants more freedom to choose how they spent their state aid.
The program was "the dream of all dreams because [Scott] never fit in anywhere," Emily Feldman said.
The program stopped accepting new participants in 2003, and the division is now making the changes to reach compliance with Medicaid rules, which will allow them to split funding costs with the federal government. The changes include eliminating funding for costs related to home ownership, cars, food, clothing and recreation.
"These items are not related to an individual's disability and should be funded via employment income, supplemental security income (SSI) or other sources," Assistant Commissioner Shea wrote.
Calls to the DDD were not immediately returned.
Kathy Walsh, the president and CEO of The Arc of Bergen and Passaic Counties, a nonprofit which assists people with developmental disabilities, said she believed new participants could fall under the state's updated rules, but cases like Feldman's should be grandfathered in because the program never had more than a few hundred participants.
"It's unfair for the state to go back on commitments they made to families," Walsh said.
The amount of money the state pays to Scott is low compared to some of the program's other participants because he is high-functioning and because Emily's proximity allows her to keep an eye on Scott instead of hiring professional caregivers. Under the changes to the program, Scott would be entitled to services which cost seven times what that state pays now, Emily estimated — though those services won't help him continue to live independently, she said. That funding would be split between the state and federal governments, while the money now comes solely from the state.
For Scott, living on his own had been a boon, Emily Feldman said. He mostly looks after himself, doing his own cooking and cleaning. The house is kept immaculately clean, if somewhat unusually, with tools and cooking utensils hung on hooks and a shelf containing knickknacks marking holidays and other annual events in chronological order. Scott also drives, and he spends time working out at the gym and running errands on his good days.
"He's come a long, long way," Emily said.
Scott does also have bad days because of his PTSD, which makes it impossible for him to keep a job, Emily said. He also has trouble taking orders, doesn't like commotion and has a tendency to loudly talk to himself when most people are sleeping, making it difficult for him to live with others.
"Because people do not tell me what I can or cannot do here, I feel at peace," Scott said.
Emily said she believed that this program had been targeted because many of the participants and their aging parents — mostly in their 70s, 80s and 90s — could not rally against the change.
"This is a tragedy," she said. "Out of everybody who's getting funding for things, why are they being picked on? It's because it was the easiest thing to do, they didn't think they'd have much of a fight. And they were right. We were the easiest target because the parents can't fight."
Emily told Patch she hoped that speaking out about the issue would help draw people to it. She doesn't want money, which she said would only be a temporary fix, but hopes that people will help pressure officials to let people like Scott be grandfathered into the program with their existing rules.
She asked that anyone interested contact her at 201-791-9697 or email@example.com.