But ELIJA is also enormously expensive, with a price that nears $125,000 a year. Before Anthony turned 21, his school district covered the cost under federal mandate. But now his parents must rely on a more limited pool of money that also has to cover other daily needs. Under that system, the average adult in New York State receives about $90,000 for services, with allocations that can range from just $10,000 to around $240,000 a year, depending on the specifics of the impairments, according to a representative from New York’s Office for People With Developmental Disabilities. For the Solomoniks, who don’t yet know how much they’ll receive from the agency, the idea of paying the difference for ELIJA out of pocket—not to mention all the additional filings required—has been daunting enough that they’ve yet to complete the process. Until then, Eddie and Marie have enrolled their son in a more modestly priced program. But even that was more arduous than expected. In September, they received a letter from their Medicaid provider indicating that Anthony needs to be recertified, meaning more paperwork.
The Solomoniks’ struggle to find a program for Anthony is mirrored in families and communities across the country. As the number of adults with autism surges, and as the research lags about how to help them achieve meaningful lives, the availability of affordable, quality programs cannot match the demand. The number of nonprofit programs like ELIJA that offer services tailored to people with autism, such as specialized job coaches, has recently increased. But even the most well-intentioned programs lack research—and therefore clarity—on how to best serve a population so diverse and so deprived.
In the meantime, says Shattuck, the Drexel professor, “middle-class and poorer people usually end up cobbling together the best care they can, whether through churches, families, siblings. But these aren’t stable solutions.”
With the uncertainty over Anthony’s future continuing to prey on the Solomoniks, the tension at home can at times become unbearable. On a scorching August afternoon, Marie was working her way through a stack of legal documents when Anthony took a seat next to his mother and turned to her with a distant gaze.
“What do you want, honey?” she asked. He smiled and let out a faint hum. “I just wish I knew what you wanted,” she said.
Marie was filled with anxiety watching Anthony loll about with nothing to do, no school to attend. She’d spent the past two decades trying to comprehend the mysteries of her son’s mind, trying to map out some sort of future for him, and yet so often she was at a complete loss.
Instead, with Anthony unable to speak for himself, all she could do was project her own thoughts onto him. “I just wish I knew what he wanted,” she said. “I buy him games, he doesn’t play with them. I try to read to him, he doesn’t want to listen.”
She turned to Eddie. “I know I should be doing something, I just don’t know what to do,” she said.
“You do no more or less than any other parent,” he reassured her.
She exhaled deeply. “I just feel this constant guilt,” she said.
Marie returned to the only thing she knew to do, and tried to call the Medicaid service provider. No one answered, so she left a voicemail.