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THE WAITING GAME
By Katherine Hoey
Since August 2019, James Maciaszek, a 19-year-old with Autism Spectrum Disorder, has spent most of his days home alone, playing video games and watching television.
Sometimes, just to break up the routine, he’ll join his mother, Christine Maciaszek, at her job at Briad Construction Services in Port Jefferson. He also likes to hang out with his friends and tag along when Christine goes out dancing on the weekends.
Like many young adults with developmental disabilities, he sits idle until he can qualify for disability services through New York’s Office for People with Developmental Disabilities (OPWDD).
50,000 young adults with autism leave high schools in the United States each year. There is little data to show what directions they all go in. Many New Yorkers in the i/dd (intellectual or developmental disability) community receive benefits through state agencies like the OPWDD, while others go on to live independently without the use of services, and others continue to live at home.
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Intelligence Quotient Scale
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In 2019, about 140,000 young adults received some form of OPWDD benefits. There is a variety of services, like respite, day programs, employment programs and independent living assistance in rent subsidies. The level of care they receive comes down to the budget allotted to them by the state disability agency.
A 2015 report from the A.J. Drexel Autism Institute found that 33 percent of young adults in their early 20s with autism never got a job or continued education after high school, 81 percent still lived at home after high school and 25 percent were socially isolated, “never seeing or talking with friends or being invited to social activities within the past year.”
The state agency was put in place in 1978 to assist New Yorkers with developmental disabilities to remain active participants in their communities, continue their education and receive a budget for needs like living accommodations, job coaches and caretakers.
Yet some young adults are ineligible for these services or don't qualify for a large budget, due to intellectual cut-offs, like the Adaptive Behavior Assessment System test (ABAS-3), an IQ scale that assesses the daily living skills of individuals with developmental disabilities. James has failed the ABAS-3 test twice already, after scoring a 72, which is two points higher than the average cut off of 70.
Scores on the evaluation report that typically qualify individuals for OPWDD services are IQ scores below 70 and/or adaptive behavior scores in the "low" range.
These tests are costly. Christine spent $365 on a do-it-at-home kit she bought online as well as $6,000 for a doctor in Manhattan who used multiple tests to try to determine all levels of functioning on James’ part.
James qualifies for all the criteria to receive state benefits except for this one test. Until the COVID-19 pandemic is over, the process has been put on hold, and James will continue to wait.
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Like many other young adults with developmental disabilities, James has been on the threshold of the disability spectrum all his life. This has given rise to many problems throughout his academic career.
His biggest advocate has always been his mother. However, Christine cannot continue to afford these tests. Her last-ditch effort is Dr. Christopher Kearny, a private practice psychologist in East Setauket.
Kids like James who fall in the middle of the spectrum all too often fall through the cracks of the system, Dr. Kearny said. He said that just because someone may be able to pass a test doesn’t mean he would know what clothes to wear in the winter time or how to pay bills.
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“So then they’re 18, and what do we do now? How do they go in the world when they’re, like, ‘too smart’ to qualify for a placement, but not able to handle the challenges that are in their life?”
Dr. Kearny said.
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Would James know to turn the stove off after he’s done cooking or what to do if someone tried to scam him for money on the phone, Christine wondered.
“Would he know to eat a balanced diet or even how to cook it?” Christine asked. “It’s one thing to say, ‘Yeah, he can cook,’ but really, he can stick frozen food in the oven.”
This is why Dr. Kearny prides himself on doing things a little differently than his colleagues and is confident he can help James qualify for benefits. He has done Autism Spectrum Disorder evaluations for OPWDD since 2013. He is also a school psychologist at Sachem High School and an adjunct professor at St. Joseph’s College.
Christine got Dr. Kearny’s contact information through two friends whose children were successful in receiving OPWDD benefits after seeing him. She hopes that these extra tests performed by Dr. Kearny will finally show representatives of the OPWDD that James deserves benefits, just like his friends do.
With the benefits, James could continue his education, learn new skills and socialize. Christine would be able to work full days at work and not worry that James was spending the majority of his days home alone.
Dr. Kearny uses a multi-method assessment approach in which he takes both the data he collects from the tests and information from an intensive intake with the parents of children applying for state benefits.
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“What they're (OPWDD) really looking for is a comprehensive overview of the individual and the impact of the disability on the individual,” Dr. Kearny said.
First, he spends a couple of hours talking with the parents about their child’s development since birth--things such as what he looked like, how he behaved, how he interacted in social circumstances, how he responded to his early environment, and whether sensory experiences like noises and food overwhelmed him.
“I try to get a really good developmental kind of understanding,” he said. Then he begins his multi-method assessment approach to get a full picture of each patient.
These tests diagnose Autism Spectrum Disorder by evaluating a wide range of characteristics such as facial expressions: gestures: repetitive self-stimulating body movements, called “stimming,” such as rocking, hand waving and head banging; body posture; communication; speech; language acquisition; and more.
“It really forces you to look at all kinds of elements that are related to a diagnosis,” Dr. Kearny said.
He has had patients who score in the 90-100 range on IQ tests, which is a normal IQ among the general population, and go on to pass Regents exams in high school. However, that does not mean they can excel independently in all other areas of life.
“An average IQ is one thing,” Dr. Kearny said, but these individuals are “not necessarily getting the vocational skills they need.”
Vocational skills are practical or firsthand skills that help a person master a trade or a job. These are crucial in assisting young adults in finding career paths, whether they do so through the OPWDD or not.
For James, who has said he wants a job working with animals, those vocational skills might include learning to handle and groom animals as well as customer service.
Agencies like Maryhaven Center of Hope in Yaphank have noticed that the vocational process should start even before the end of high school approaches, Amanda Dondero, the director of Maryhaven Center in Yaphank, said.
States have begun putting programs in place for agencies, like Maryhaven, to teach vocational skills to children as young as 14.
“The pressure is harder when you're older because then you’re racing against the clock,” Dondero said.
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From the OPWDD’s standpoint, the bottom line is that to get benefits, parents have to prove that their children cannot be autonomous.
The fight for benefits is a long haul, but Christine is adamant that James receive services like self-direction and day habilitation services, which would provide him with educational and recreational activities.
In April 2020, the family was looking forward to James going to a prevocational job training program at the Integrated Business Center in Maryhaven Center of Hope in Yaphank, but the program was put on hold until further notice due to COVID-19.
When this is all over, Christine hopes to complete a final testing assessment with Dr. Kearny. She, along with many other families, will continue to push for disability benefits for those on the threshold.
“If these kids were alone tomorrow in this world, could they take care of themselves? The answer would be no,”
Christine said.
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