Lisa Fitton, of Freehold, said she faced fear every day for years.
She hid in her car, behind neighbors’ cars, and in closets. Caring for her son Andrew, who has severe autism and can be violent, was nearly impossible for Fitton to manage on her own.
“I got to the point where I was scared for my son,” she said in an interview. “When he started chasing me, I ran away from home. I couldn’t do it alone, and I didn’t get the help I needed.” New Jersey’s child care system is supposed to provide a lifeline in such extreme cases. The program is tasked with providing emergency housing and treatment to severely disabled children whose behavior may pose a danger to loved ones or themselves.
But family and disability advocates say the program is severely underfunded and can take months or even years to provide help to parents in crisis. And since the COVID-19 pandemic, health care providers of all types have faced workforce shortages and temporary housing is even scarcer than before.
While approximately 13,000 children and young people with disabilities participate in CSOC’s various programs, New Jersey has only 353 emergency beds reserved for the entire population. The state acknowledges that due to staffing shortages, only 187 beds are currently available.
“We have a critical and massive shortage of beds for people under 21 who have severe, problematic and risky behaviors…,” said Lisa McCauley Perls, a Clark-based attorney who specializes in such cases and is the mother of a child with developmental disabilities. “The wait times are so long and the process so complicated and cumbersome, families often give up.”
States promise reforms to CSOC
Jason Butkowski, a spokesman for the Department of Children and Families, which oversees CSOC, said the state is aware of the challenges and is working to address them. Gov. Phil Murphy’s budget proposal includes an additional $7.3 million to expand respite services.
The administration is also considering adding PerformCare Behavioral Health Solutions, the sole behavioral health company that manages the system, in hopes of easing the bottleneck, Butkowski said. PerformCare did not respond to a request for comment on the matter.
“We are in the process of identifying and bringing on board additional contract service providers that can augment our capabilities,” Butkowski said.
With a budget of more than $800 million, the child care system is tasked with providing behavioral health care to tens of thousands of New Jersey youth with emotional and mental health needs, substance use issues and intellectual or developmental disabilities.
More: Why it’s hard to care for children with disabilities in New Jersey: Parents say state funding is ‘dysfunctional’
Emergency and out-of-home care is only a small part of what it offers, but advocates say it can be crucial when needed. CSOC offers counseling and temporary placement in group homes, foster care and psychiatric hospitals where children can receive treatment until it is safe to reunite with their families.
“It’s the hardest decision of your life and you never get over it,” Perls said. “You do everything you can to avoid getting that help because the system, especially the foster care system, makes you feel like you’ve failed because the goal is to raise a child.”
“Every day was like a test of survival.”
Ms. Fitton’s son, Andrew, now 24, had an aggressive streak – by the time he was a teenager he had outgrown his petite mother – and he repeatedly bit pieces of flesh off her arms, leaving her with scars.
She said she sought temporary protective intervention from the state, but didn’t get the help she sought. “We were on a waiting list for some kind of stabilization bed, a residential treatment facility, whatever,” she said. “We were on that list for months, and every day was like a survival test. His behavior was erratic.”
While the family waited for placement, the situation worsened. Fitton said her husband moved to California with their other child, leaving her to care for Andrew alone. When things got out of hand, she called police for help, she said. Police took Andrew to a local emergency room, but the relief was short-lived. Fitton was eventually approved for in-home care by CSOC, but the therapists either never showed up or canceled at the last minute, the mother said. Finally, about two years after her request, Andrew was placed in a group home for people with developmental disabilities.
New Jersey’s disability ombudsman, Paul Aronson, appointed by Murphy, has raised numerous concerns about the Department of Children and Families over the years.
Families frequently come to his office to complain about the agency, he noted in his annual report, and while well-intentioned, the agency often uses mental health tools for conditions that should be treated as physical or developmental disabilities, he wrote.
The agency offers a variety of services to youth, but because some cases are complex, it can take time to provide the right care, Butkowski said. Children on CSOC’s waiting list can receive interim services, such as home care, until they can get the right treatment, he noted.
Clifton’s mother says state therapists failed her
Clifton resident Janet Tavares, a 53-year-old divorced mother who faced similar issues, also said the state didn’t do enough to help her during the crisis.
She needed skilled support for her son, Lucas, now 16, who has severe autism and exhibits aggressive behaviors including scratching, head-butting, choking and hair pulling.
In 2021, Tavares’ mother reached out to the state for help. She said she expected an autism specialist to show up. But the therapist who showed up a month after she contacted them wasn’t trained to address her son’s needs, Tavares said.
Instead of using typical treatments for autism, like applied behavior analysis, Tavares said, the therapist spent time engaging her son in games and playing with him. The state approved eight weeks of treatment, but Lucas was able to receive it for less than that because it took time to find a therapist, Tavares said.
“Eight weeks went by and that was it,” she said. “The treatment ended, but nothing was resolved. He was still aggressive,” Tavares said.
“It’s 2024 now and we’re still waiting for the right services to be provided.”
Butkowski did not provide average wait times, but said challenges in matching children with the right services often mean wait times are long, especially for children who need specialized care.
“We don’t keep data on why young people are on waiting lists, but we know from experience that sometimes appropriate programs are not available when they apply, despite there being vacant and clinically appropriate beds elsewhere in the care system,” he said. “Age and gender also influence bed availability.”
Severe autism can leave families with ‘PTSD’
Lack of support often has a ripple effect: advocates and families talk about the impact that responding to an abusive child has on siblings, spouses and friends.
Aronson wrote in his report that the aggressive behavior of siblings has left loved ones suffering from “PTSD” and fearing for their safety — a sentiment echoed by parents interviewed for this story, who said the mental stress has been immense.
Feelings of helplessness and constant anxiety can affect the whole family, siblings can feel neglected, marital conflicts can intensify, aggressive behavior can put other family members at risk, adding to the trauma and fatigue. The financial burden of paying for medical expenses also adds to the pressure.
There’s another challenge that’s often overlooked: Being mindful of the safety of others means avoiding social situations, Tavares said.
“There are things we can’t be involved in, whether it’s for the safety of our family, the safety of our children, the safety of strangers, and that’s very depressing and frustrating,” she said. “But at the end of the day, it’s public safety. I say, ‘Thanks, I appreciate the invitation, but I can’t go.’ It’s in the public interest for me to remain hidden.”
Gene Myers covers disability and mental health for NorthJersey.com and the USA TODAY Network. To get unlimited access to the most important news in your local community, subscribe now or activate your digital account.
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