Hearst published a story (DNT20140426.pdf) I wrote about the lack of support young adults with disabilities and their families face after they age out of the public school system:
Jill Edelman’s daughter is 24, attended a boarding school on Cape Cod focused on special education, and now is living in an apartment with another young woman in Ridgefield and attending a day program that provides her with vocational opportunities.
Tucker Acocella’s son is 22 and attended a boarding school in the greater Boston area for people with visual handicaps. But Acocella’s son is now sitting at home alone every day, listening to the rock-and-roll music he loves.
Both Edelman’s daughter and Acocella’s son are young adults with disabilities. But once they age out of the public schools and the state’s legal obligation to provide them with an education, they found themselves on opposite sides of the law, which determines the eligibility for people with significant intellectual disabilities to receive services as adults.
The way those eligibility requirements play out can have serious consequences on families.
Edelman’s daughter is entitled to services because her IQ is low enough to qualify for services.
But Acocella’s son is not. His IQ was four points too high to qualify for services.
“Their motivation is to deny benefits, not to grant benefits,” Acocella says of the state Department of Developmental Services.
The success story for Edelman’s daughter is one that Edelman, a therapist who has written a book and blog about parenting a child with special needs, is very happy about. “One of the biggest concerns of a parent with a special needs young adult” is that they will regress if they are not exposed to new opportunities, stimulation and interaction with peers, Edelman said.
Young adults with disabilities of all types, both physical and intellectual are entitled to a public education up until around the age of 21. But then they and their families have to transition out of the public school system.
The cut-off age for receiving services from the state Department of Developmental Services is young adults, who at the age of 18, have a significant intellectual disability as measured by a standardized test and an IQ of 70 or lower. People with intellectual disabilities such as those on the autism spectrum or Prader-Willi syndrome can qualify, according to Thomas A. Dailey, a regional director for DDS.
After age 21 There is a whole group of people with disabilities who don’t meet the state criteria for assistance as adults because they are higher-functioning with an autism spectrum disorder or their IQ is above 70, said Lolli Ross, executive director of Abilis, which provides assistance to adults and children with developmental disabilities and their families in lower Fairfield County and parts of Westchester County.
But they still need support in daily life and can’t live completely independently, she said.
One such person is Sean Pultz, 28, who has autism. When he aged out of the system, he was highfunctioning enough that he did not qualify for assistance, yet he was unable to get a job or live on his own.
He is now about to graduate, cum laude, from Western Connecticut State University in Danbury with a bachelor’s degree in theater arts. Although he is able to live on his own, he still requires significant help.
The cost of teaching Sean the interpersonal and life skills he needed to be able to attend school has been high for his parents, both in terms of the time and money.
Sean’s mom, Marrietta Pultz, said they tried sending him to a year-long program after high school that was designed to teach him life and job skills, but he came out of it basically unemployable.
“He spent a year just sitting in his room,” Marrietta Pultz said.
At that point, Sean’s parents realized they had to somehow get him real job training. His functioning level had allowed him to find success performing as an actor from a young age — he has been performing with Stamford’s Curtain Call theater for years — so his social abilities were enough to build on.
They sent him to Gibbs College for a year, where with considerable support from his family, he was able to get far enough that he had the credits and life skills to enroll at Western, which has a special education class designed to help students like Sean.
He is now planning to parlay his Curtain Call experience and theater-related summer jobs and internships he’s had into an acting career. But it took six years, and many, many hours of support from his parents. And his parents will be left with tens of thousands of dollars in school loans.
But Sean Pultz’s story is an extraordinary one.
There are many other special needs adults who don’t qualify for ongoing services, and don’t have prospects for a full life.
In Connectiut, DDS provides support services to more than 21,000 Connecticut residents, including 16,000 adults, Dailey
said. In 2013, 400 people applied for DDS services, but he estimates that 50 or 60 were found ineligible.
Connecticut has a waiver where people with autism whose IQs are above 70 can still qualify for support from DDS, said Dailey and Nicholas Gelbar, a postdoctoral fellow with the University of Connecticut Health Center’s A.J. Pappanikou Center for Excellence in Developmental Disabilities.
However, not everyone is helped by the waiver, advocates said.
Another issue facing young adults with disabilities is the lack of planning that sometimes occurs for preparing for their transition into adulthood and out of the school system.
“It should be a seamless transition” out of the public-school system into DDS services, said Abilis Executive Director Ross. But it often is not, she said, due to poor funding, poor planning or poor support from Connecticut school districts.
Without that planning, special needs children who are high-functioning enough to learn life and job skills may end up requiring extensive assistance for life, presenting a serious problem when their parents die, said Monica Schlessinger Smyth, director of family resources for Abilis.
Gelbar, who researches how to incorporate people with disabilities into post-secondary education, said that growing up presents the normal challenges for teenagers with disabilities as it does for any teenagers.
“Individuals with disabilities are individuals,” Gelbar said. “They are experiencing the normal transition that everyone experiences. Everyone has some difficulty with these transitions. What’s special about individuals with disabilities is that they have this extra need of support. Going through that transition, there are more particular challenges for them, if the transition isn’t dealt with in a systematic and structured way.”
Back when Sean Pultz was at Westhill High School in Stamford some 15 years ago, his parents discovered transition services by accident. They were attending a conference for special needs artists in their ongoing quest to feed their high-functioning son’s interest in acting and film, when they heard about a group based in Bethel called Ability Beyond that provides ongoing education and job training for people with disabilities.
It was only when they began working with Ability Beyond that they learned of a state agency, the Bureau of Rehabilition Services, that is tasked with helping families with the transition.
Some of the best practices in assisting young adults with disabilities to make the transition out of the school system and into adulthood is getting them work and volunteer experiences so they can envision themselves in those worlds and articulate what support they would need to be employed or go on to post-secondary education, Gelbar said.
Many times people with disabilities want to live individually, Dailey said, which can be less expensive than living in a group home. Paying for someone to live in a group home costs an estimated $130,000 a year, and allowing higher functioning people to live on their own rather than in a group home allows another Connecticut resident who may not have other options to live there, Dailey said.
“What we want is for everyone to live self-determined lives … and that we afford them the opportunities to make choices,” said Marie Bennett, DDS director of individual and family support services.
Acocella, who is a single parent, said he is very concerned about his son’s future. His son not only has congenital glaucoma that has pretty much taken away all of his sight, but also has an intellectual disability.
Because his IQ was four points higher than the state’s cut-off, the only help Acocella said he has gotten from the government in transitioning his son from boarding school to adult life has been limited to a four-month program paid for by the state Department of Rehabilitation Services’s Bureau of Education and Services for the Blind.
Acocella’s son is now living away from him in a program to teach him some skills of independent living like cooking, managing money and doing household chores.
Besides volunteering at a local gas station and taking a music class in Bethel, Acocella’s son stays at home, he said.
“What happens if I die?” Acocella asks. “What happens to my son? Who takes care of him?”
Edelman, while her daughter is living independently and is receiving support from the government, also is worried about her daughter’s future when she and her husband pass away.
“The fact is she is vulnerable to much larger powers (including) government funding, federal and state,” Edelman said. “Hopefully, long after we’re gone, she’ll still be protected by these.”
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