One Boy’s Struggles Show How States Often Fail Kids With Severe Autism
PHILADELPHIA — On the 110th day of 12-year-old Emmett Tolis’ residence at Children’s Hospital of Philadelphia, his mother returned from a brief meeting with a friend and found her son again strapped to his hospital bed.
He had another aggressive outburst while she was away, expressions of frustration that cause Emmett to lash out at people around him. More agonizing than seeing Emmett in restraints, Elizabeth Tolis said, was that he didn’t seem to mind it. The process of being bound to his bed had become familiar to her ritual-craving son with severe autism.
“That’s what chokes me up. He doesn’t even really have an understanding,” she said. “Humans are not supposed to be strapped like that.”
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Since he arrived at the hospital July 8 from his home in Jamison, Bucks County, a child who loves swimming and roller coasters has not stepped outside once. He has been put in restraints as frequently as once weekly through the course of his stay to cope with his aggression. His parents try to keep him active with art projects, an exercise bike and walks around the hospital floor, which are marked by his insistence on greeting people he passes and touching specific objects. Most of his day he spends with headphones on, playing games on a smartphone.
Emmett went to the hospital as an interim step on the way to finding residential treatment, his family said, but he is still there because there is nowhere else for him to go.
“He is warehoused. He’s like inventory at an Amazon plant,” said George Tolis, Emmett’s father. “He’s just sitting there.”
The family is wary about taking him home, concerned his aggressive episodes will dominate the household and risk harm to himself. Six residential treatment facilities have turned him down for lack of space or the complexity of his condition. One told his mother a bed wouldn’t be available until December 2022.
Now, Emmett’s time at CHOP is ending and his family must take him home, with fears he will do no better than when they took him to CHOP.
Dramatic as their experience sounds, it’s not unique. The state Office of Developmental Programs doesn’t track the waiting lists at 33 residential treatment facilities that serve children with intellectual disabilities and autism in Pennsylvania, but people in the provider industry said they are worse than ever. Months-long waits, like the Tolis family’s, are becoming more common.
“We recognize the strain this puts on families,” said Ali Fogarty, a spokesperson for the Pennsylvania Department of Human Services. “We are working to make more services and supports available to help families waiting for a residential placement.”
Tami D. Benton, CHOP’s psychiatrist-in-chief, testified before Congress in April about the crisis in behavioral health care for children exacerbated by COVID-19.
“Even before COVID, the shortage of options, particularly across the continuum of care, were staggeringly limited,” Benton said in her testimony. “It is, in fact, hard to overstate this concern.”
Benton described “extreme shortages” in behavioral care for children. That is coupled with a lack of psychiatrists, psychologists and other professionals at facilities — a long-term problem that experts blame in part on the low rates paid by Medicaid for this high-stress work. COVID-19 worsened the situation. Behavioral care facilities in the state have almost a quarter of their staff positions unfilled, said Mark Davis, president of Pennsylvania Advocacy and Resources for Autism and Intellectual Disability, compared with 19% pre-pandemic.
Hospitals have increasingly been a last refuge. Hospital stays for people with autism of all ages grew by 43% from 2016 to 2019, according to the most current data from the federal Agency for Healthcare Research and Quality. Anecdotally, experts say the pandemic likely has only accelerated the trend. A CDC study found that more children are landing in emergency rooms with mental health problems, and treatment options are sorely lacking. CHOP has seen a 60% increase is psychiatric emergency visits in recent years, Benton said.
Arts and crafts, and walking on eggshells
Five nights a week, Elizabeth Tolis, who is 42, stays at the hospital with Emmett. George Tolis, 50, stays on the weekends. Emmett’s mother adorns his room with his drawings and decorated it for Halloween. They sew plastic threads into bookmarks, and when he finishes one he revels in the foot massages she gives.
“His attention to detail is wonderful,” she said.
But any deviation from routine can spark a meltdown, despite all the tiptoeing she does around her son. The scratches on her wrists and chest bear witness.
“In order to keep him from not needing medication and straps, I just have to tolerate it,” she said.
In her testimony to Congress, Benton said hospitals like hers are equipped to care for acutely ill children, not to provide the kind of behavioral treatment a child like Emmett needs. The best it can do is keep the child safe until an appropriate place opens up. The lack of local resources means some children end up in facilities out of state.
“It feels sad, it feels shameful, it feels infuriating that there is nowhere and you’re expected to be in crisis all the time,” said Jessica Berger, of Downingtown. Her daughter with severe autism, Zoe Potack, 11, stayed at CHOP for 3 1/2 weeks in 2020 waiting for a residential placement that never materialized.
“It messes with you as a parent,” George Tolis said of the struggle to find help for Emmett. “If it was just up to me and I had no other kids I would sit here and take any beating he could give me because I’m his dad.”
A ‘terrifying’ turning point
One in 88 children in the United States has autism disorder, said Natalie Solimeo, a CHOP spokesperson, “making it the fastest-growing developmental disability in this country.” It is unclear if this growth is due to more cases or to the condition being more effectively identified — or, most likely, a combination of both factors, reported the Centers for Disease Control and Prevention.
The condition ranges widely in severity, and typically becomes apparent in a child’s first three years, most often in communication difficulties and a preoccupation with repetitive interests or behaviors, Solimeo said. It’s far more common in boys than girls.
Emmett can be a deeply affectionate child, expressing himself with touches and hugs.
“I have the cuddles of a 2-year-old for the rest of my life,” his mother said.
His understanding of the world, though, is similar to a toddler’s, and when his routines are broken, his limited ability to express himself leads to aggression.
“He can be happy as anything and I can say anything, like, ‘Emmett, grab my coffee cup,'” his father said, “and his whole face changes.”
At times like that he often attacks, pinching and scratching at his parents’ hands and necks.
“Boys (with autism) don’t have any meaningful way to let energy out,” said Guodong Liu, an associate professor at Penn State’s department of public health sciences who studies youths with autism and their interactions with hospitals and emergency departments.
Early adolescence is especially difficult for children with autism, said Liu. They’re getting bigger and stronger, making them harder for caretakers to handle, and experiencing hormonal changes that challenge all children.
“He’s not a boy with malicious intent,” Elizabeth Tolis said. “He’s a 12-year-old hormonal kid who’s dysregulated, and he’s lost his entire summer sitting inside a hospital room.”
Emmett’s meltdowns had always been difficult, but in the first half of 2021, they were becoming unmanageable. Emmett is 5 feet tall and weighed 120 pounds when he went to the hospital. The scrapes and bruises on his parents were getting worse. His family worried they could hurt Emmett while trying to subdue him.
The breaking point came when, in a moment of exasperation, Elizabeth Tolis wanted to hit her son.
“That thought of wanting to hurt a child was terrifying to me,” said Tolis, who put on hold her career as a children’s dance instructor to care for Emmett.
Staffing woes have been a hallmark of most businesses in the pandemic. But when a care facility lacks clinicians and even office staffers, the entire system backs up, explained Jim Sharp, director of children’s policy for Rehabilitation and Community Providers Association. Some children in residential care who are doing well enough to go home if they had the proper support are instead stuck in facilities that could be serving a kid in crisis. Other beds must be left open to preserve a safe staff-to-child ratio.
As Emmett’s parents have learned, Pennsylvania treatment facilities, which collectively have 483 beds dedicated for children with intellectual disabilities or autism, also can turn down children with complex needs.
“If providers were required to accept all children, this could create challenges of children being served in inappropriate environments that may not be safe for their circumstances,” Fogarty said.
Some facilities have space only for specific populations of children, like, say, adolescent girls. Some residential facilities don’t take kids with autism at all.
“These families are in desperate straits, some of them,” said Audrey Coccia, co-executive director at the advocacy organization Vision for Equality. “It’s a very, very difficult situation here for the families.”
Berger, the Downingtown parent, took daughter Zoe to the hospital after she was diagnosed with a cataract.
The girl, who had taken to hitting herself in the face, was eventually found to have two detached retinas and is now blind.
“In terms of autism, they just don’t know enough,” Berger said of CHOP. “I wish somebody there had said when they saw my daughter punching herself in the face, let’s do this or that because she could detach a retina.”
Berger finally found the Kennedy Krieger Institute in Baltimore, which specializes in caring for children like Zoe. She has progressed so well, her mother hopes to bring her home in December.
“It’s infuriating to me that there aren’t places like Kennedy Krieger everywhere where if you’re in crisis you can go there and get help,” Berger said.
Both state officials and advocates for children with severe developmental and behavioral disabilities say residential treatment need not be permanent.
“The goal is always to return the child to their home and family and provide supports to the family so the child can safely live at home where they have better developmental opportunities,” Fogarty said.
Berger, the Tolis family and CHOP all agree that Philadelphia’s world-class acute care hospital is not the place for children like Emmett and Zoe.
Emmett had been on a neurological floor for three months before staff recommended he might do better on a medical behavioral health floor.
On that floor, Emmett is receiving group sessions, occupational therapy, and music, dance, and speech therapy — which are helpful for now.
“Why are we focusing on tasks and ideas that are useful in a residential facility when you’re just going to kick him out and send him back home?” Elizabeth Tolis asked.
The sound of screaming children is routine there, George Tolis said. Emmett seems oblivious, but the 12-year-old has regressed, his mother said. The floor is very restrictive, and the limited variety in his day, with hours spent in a 24-by-13-foot room, has allowed him to slip further into his own world.
CHOP would not address specific questions about Emmett’s care, citing confidentiality restrictions. The hospital has emotional and behavioral health services, Solimeo said, but not a licensed inpatient psychiatric unit. Inpatient care is focused on preparing the child to be transferred to either inpatient or outpatient psychiatric treatment, she said.
The hospital expects to open an outpatient behavioral health center in West Philadelphia next summer, Solimeo said, and an inpatient pediatric mental health crisis center, with 46 psychiatric beds and a 10-bed crisis stabilization unit, in December 2022.
DHS, meanwhile, expects to make more services available to families with children on waiting lists, Fogarty said. And health-care providers have increasingly pointed to the Medicaid rates, which are set by the state, as a growing crisis. A recent Pennsylvania Health Care Association survey of residential care providers found almost 40% did not believe they could afford to continue operating for another year.
An uncertain return home
This week, Emmett is expected to return home, 123 days after he arrived at CHOP. It isn’t clear to Elizabeth Tolis why he is being discharged, she said, and she feels unprepared. The hospital did not respond when asked why Emmett was being discharged.
“There’s no one in Children’s Hospital that’s said, Let’s talk about the behaviors you want to talk about the most,” she said. “Let’s analyze that and see where the triggers lie.”
Emmett will attend a new school during the day, his parents said, and they are modifying a bedroom in their three-story town home to replicate the routines of the hospital while limiting distractions from the rest of the house. The work includes recessed lighting in the ceiling so Emmett won’t knock over freestanding lamps.
Sharp said such measures highlight the struggle for families with children with severe autism.
“You’re either warehousing them at home,” he said, “or you’re warehousing them in a hospital.”
The long-term plan remains to find a residential placement for Emmett.
“I’m kind of conflicted,” George Tolis said. “I’m very happy that he’s going to be home, but really terrified of what’s going to happen at home. How’s he going to do?”
Elizabeth Tolis keeps telling herself her son can play outside again. He will be with his family again.
“I’m focused on the blessings that are about to happen to him,” she said. “If I continue to focus on just the negatives and the scary stuff, I don’t think that puts me in the best mental space to be the best mom that I need to be right now.”
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