Connecting state and local government leaders

The Coming Care Crisis as Kids With Autism Grow Up

In this 2016 photo, Ben Alexander looks out the window of his bedroom in Metairie, La. Ben, who has nonverbal autism, attended Tulane University with the help of his father, Sam Alexander.

In this 2016 photo, Ben Alexander looks out the window of his bedroom in Metairie, La. Ben, who has nonverbal autism, attended Tulane University with the help of his father, Sam Alexander. AP Photo

 

Connecting state and local government leaders

The number of adults with autism diagnoses is soaring, but there aren’t enough programs and services to meet the demand.

The Medicaid provider had assured her that this was the best option, so Marie Solomonik walked into the day-habilitation center in Queens, New York, with all the optimism she could muster. Marie was with her husband, Eddie, on this rainy March morning to scout out the facility for their son, Anthony, who has autism.

“This place makes my skin crawl,” Marie whispered.

“Just promise me you’ll keep an open mind,” Eddie responded.

In the past, centers like these had been a torment for Anthony. There was the time in middle school when another boy hit him in the face with a metal lunch box. There were the girls in the park who mocked him relentlessly for being nonverbal. And there was the incident during gym class when he tripped on the treadmill and got caught in the conveyor belt. By the time anyone noticed him trying to scream, nearly all the skin had been flayed from his knees.

The horrors were enough to persuade the school district to cover the costs of a specialized schooling program on Long Island, where Anthony has since seen steady improvement. But the Solomoniks had now lost their funding: On March 4, Anthony turned 21, the age at which people with disabilities are no longer entitled to a free public education under federal law—a juncture often called the “services cliff.” And for many American families, the drop off this cliff leaves them scrambling, with few, if any, suitable options.

For more than a year, I’ve followed the Solomoniks as they’ve approached the dreaded precipice and grappled with a series of unenviable, and often unanswerable, questions: What kind of government subsidies can they expect for housing? Programming? Medication? And then they have more existential concerns: What constitutes a meaningful life for an adult with autism? Would slotting Anthony into a menial job be better, or would continuing his education, no matter how expensive or seemingly futile, be more worthwhile? And who could they possibly trust to consider these issues after they die?

As the Solomoniks roamed the hallways of the center, each patient seemed to offer potential visions of their son’s future. Maybe Anthony could be like the young woman in overalls tracing illustrations from a picture book. Or perhaps he’d fit in with the older men sorting supplies for the window-shade manufacturer that offered them internships.

When the program coordinator sat down to debrief with the Solomoniks, his answers offered them little comfort. Yes, he said, the ratio of instructors to patients is only 1 to 6. No, the instructors aren’t trained to deal with autism specifically. Yes, a patient did disappear from the building recently, but he returned home safely, thank God.

Marie left the building trembling. “There’s got to be something better,” she said, taking a drag on her cigarette.

“I wouldn’t be so sure,” Eddie sighed. “This might be as good as it gets.”

Although people with autism have always existed, the United States saw a tremendous spike in diagnoses beginning in the late 1990s, due in part to increased public awareness of the disorder and improvements in evaluation. About one in every 59 children is diagnosed with autism, according to the Centers for Disease Control and Prevention, up from one in every 150 in 2000. About half a million people on the autism spectrum will legally become adults over the next decade, a swelling tide for which the country is unprepared. When they turn 21, these people leave behind all the programming and funding they received under the Individuals With Disabilities Education Act and enter a labyrinth of government services that vary wildly from state to state. Although people with other disabilities face similar problems, the staggering rise in diagnoses of autism creates a distinctly troubling dilemma in how to ensure that these people receive proper care.

What happens when people with autism age into adulthood remains understudied. Researchers predominantly focus on early intervention—less than 2 percent of all autism funding is directed to the experience of adulthood and aging—even though people with autism spend a vastly greater proportion of their life as adults. The existing findings are dismaying. About half of adults with autism continue to grapple with aggressive, self-injurious behaviors as they get older, and about half are also unemployed—the lowest employment rate among disability groups. Especially for those with greater challenges, it is more difficult to attain the basics necessary to live a comfortable life: housing, job training, and social opportunities.

“It’s as though we never really considered the fact that all of these kids would eventually grow up,” says Paul Shattuck, a professor at Drexel University who studies autism. “Even compared to those with other disabilities, kids on the autism spectrum are having much worse long-term outcomes.”

Amid this surge in diagnoses, many programs for people with autism are overcrowded and ill-equipped to handle the needs of their clients. And to further complicate the matter, a thicket of bureaucracy stands between families and the services required by autistic adults.

“It’s profoundly difficult for families to get the resources they need, especially middle- and lower-income families who need the funding the most,” says Julie Lounds Taylor, an associate professor of pediatrics and special education at Vanderbilt University. “So a lot of the time, parents end up essentially devoting their entire lives to fighting on behalf of their children.”

Certainly, this was not the future Eddie and Marie imagined when Anthony, their first child, was born in 1997. At first, he hit all the developmental milestones, but then came the regressions—muted speech, hyperactivity, sensory issues—followed by a diagnosis of autism when Anthony was 2 and a half years old.

In the following years, the Solomoniks felt as though their life came unraveled. Marie quit her job in marketing when Anthony was born. Eddie took shifts as a security guard after retiring as a police officer. The family sold their home and moved to save money—then they moved again to save even more money. Their younger daughter, Michelle, became so embarrassed by Anthony’s behaviors that she could barely stand the reactions he would get in public. When the family goes out to eat at a restaurant, they sit in pairs at separate tables.

It’s not that Michelle doesn’t care for her brother. Marie and Eddie hope that she might assume some of the caretaking duties one day, and that the siblings’ relationship might regain a sense of normalcy, if not outright affection. But Marie and Eddie aren’t counting on it. Like any teenager, Michelle wants to imagine a life without the burdens of her family, a future that’s all her own.

Anthony is slight and handsome, with hazel eyes and a perpetual grin. Some of his habits—drinking dozens of bottles of water and Gatorade, running through any sprinkler he sees, playing and replaying songs by the Grateful Dead and Prince—are harmless and even sometimes charming. And yet it is obvious that he struggles immensely: He does not speak a word, and he isn’t capable of more than rudimentary math and spelling. His main form of communication is an app on his iPad. Marie and Eddie know he will likely need full-time assistance for the rest of his life.

So often, the Solomoniks find themselves at odds when dealing with Anthony. To cope with the stress, Eddie exercises obsessively; Marie is averaging a pack of cigarettes a day. To budget for their future, he keeps the lights low around the house; she buys lottery tickets. Eddie sees himself as the realist in the family. He wants to abandon the notion that Anthony might learn math one day and instead move toward teaching him life skills such as using the microwave and locking the front door. Marie, meanwhile, finds comfort in the fantasies. While she has Anthony on every educational regimen and medication the doctors recommend, she has also tried just about every possible unsubstantiated remedy she’s heard of, including vitamins running $250 a bottle. She’s spent more time than she cares to admit searching the internet for stories of kids with autism who woke up one morning cured of their condition. Maybe one day, she hoped, that would be Anthony.

That unlikely prospect was especially tantalizing for Marie on a recent Thursday evening, as she stared at two piles of government paperwork stacked as high as her mug. Securing reimbursement for Anthony’s services was formidable enough when all of the funding came through one stream from the Department of Education, but now, in adulthood, those funding sources are far more fragmented and puzzling.

In general, adults with disabilities are eligible for resources through Medicaid, Supplemental Security Income, and various state disability agencies. These funds are meant to be combined and configured to fit the needs and priorities of each person, going toward everything from employment opportunities and day services to long-term care. But in reality, all the layers of bureaucracy often seem to tangle together for families. Individuals have to be certified separately by a variety of different agencies, all of which require their own documentation and have their own criteria for approval. Safeguards intended to protect adults with disabilities from being exploited often stymie parents and cost them money they simply do not have.

“There’s not enough funding in the first place, but even so, a ton of money is left on the table because this system is just so difficult to navigate,” says Taylor, the Vanderbilt professor. “It’s nearly impossible for full-time professionals with a great deal of resources. I can’t even imagine what it must be like for families who are less well resourced.”

Just earlier this year, the son of Marie’s friend was declared ineligible for government funding because of a $51 discrepancy in his bank account. The thought of something like that happening to Anthony gives Marie panic attacks. Even a tiny logistical mistake—her mistake—could mean the difference between debt and solvency, between having the funds for a year of programs and having Anthony fall into a year of lazing around the house, of boredom, of backsliding.

Eddie and Marie, who are in their 60s and have little family support to fall back on, know that within a matter of years they will have to make long-term arrangements for Anthony’s housing and care. But at least for now, the Solomoniks are simply hoping to find a decent day-habilitation program—a place where they can drop Anthony off five days a week and know he is being supported and, above all, kept safe.

In truth, they’ve already found an ideal fit for Anthony, at a nonprofit called Empowering Long Island’s Journey Through Autism (ELIJA). Anthony began receiving services there about a decade ago, with programs that included speech and behavioral instruction, part-time internships at three local businesses, and work on an organic farm, where he gleefully planted vegetables. Working with the organization, Anthony made some small yet meaningful advances, such as learning how to brush his teeth and tie his shoelaces.

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.

Noah Remnick is a writer and doctoral candidate based in New York and Oxford, England. This article was originally published in The Atlantic.

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