In April, a group of Orange County parents flew to Sacramento for a conference hosted by Disability Voices United, a group that advocates for people with disabilities and their families.
They wanted to highlight three issues to state officials at the event: a lack of mental health care for children with developmental disabilities, a disorganized government system meant to help them, and gaps in the provision of routine care.
Among them was Christine Libatas, a single mother from Fullerton who, after multiple calls to 911 and emergency hospitalizations, made the difficult decision last fall to move her autistic son, Noah, to a state facility for at least a year.
Libatus has struggled to find the support she needs to keep her son at home. “Families are finding themselves in situations where they have no choice but to place their children in group homes or treatment centers more than 12 hours away from their homes … or even leave the state of California altogether,” she told the conference audience.
Christine Liburtas is embraced by Beth Martinko outside an elevator at the Capitol Annex Swing Space building in Sacramento.
(Jose Luis Villegas/The Times)
“Please hear us,” she told state officials, before looking away from the microphone.
Autism diagnoses are on the rise, estimated to affect more than two million children and young people nationwide, but experts and advocates lament a severe lack of services to meet the mental health needs of autistic young people.
Some researchers estimate that more than 90% of autistic young people have co-occurring conditions like anxiety, depression, and ADHD, and many of them have suffered staggering levels of trauma.
But there are few specialized facilities in the country that cater to the unique needs of people with autism and co-occurring mental illnesses, especially in crisis situations, said Cynthia Martin, a senior clinical psychologist at the New York-based Child Mind Institute.
Between 2020 and 2021, the number of California children and teens served by the state's developmental disabilities system who were determined to have “complex needs” — the state's term for people who require a range of crisis services or are admitted to closed psychiatric units — rose from 536 to 677, according to a report released last year by the California Department of Developmental Disabilities Services.
California is working to build facilities to house and support such youth, including STAR Homes, which, like the one Noah was in, provided “crisis stabilization” for about a year. But the state is seeing an increase in the number of people needing such programs, as well as former residents returning for “further stabilization,” state reports say.
As of this summer, STAR Homes could only accommodate 15 young people in the entire state, a home that Noah has accepted with a budget of more than $1 million per resident per year.
While there are other community facilities that can house at-risk youth with developmental disabilities, “'can't say no' options remain critical for individuals whose services private providers cannot or will not provide,” the state report concluded.
Autistic people and their families also lament the lack of adequate support in the community before a crisis strikes. Researchers have found that mental health workers are often unprepared to work with people with intellectual and developmental disabilities and tend to attribute symptoms to the disability rather than overlapping needs.
Christine Libatas looks at a drawing of her son Noah in her Fullerton home.
(Mel Melcon/Los Angeles Times)
“It's common for mental health professionals to turn away people with developmental disabilities or say, 'I don't treat these people,'” says Zoe Gross, advocacy director at the Autism Self-Reliance Network.
Alison D. Morantz, director of the Stanford Intellectual and Developmental Disabilities Law and Policy Project, called it a “scandal” that, amid a shortage of psychiatric beds for young people, “when a family discloses that their child is on the autism spectrum, we can say, 'Fine,'”
“It puts parents in a difficult situation,” she says.
The biggest challenge for families of autistic young people is often aggression, but it's not a central feature of autism and is a symptom of other issues that need to be uncovered, child and adolescent psychiatrist Dr. Matthew Siegel told the federal panel last year.
“You have to look beneath the surface and beneath the surface to understand what's causing and driving this aggression,” says Siegel, founder of the Autism and Developmental Disorders Inpatient Research Collaborative. He and other researchers have seen promising results from specialized hospital units, but such units are few and far between — “there's not one in every state,” he says.
“Even specialized clinics that can address these challenges are very rare,” he says.
The Supreme Court has ruled that institutionalizing people with disabilities who could live in the community is discriminatory when community placement is “reasonably acceptable.” Federal investigations sometimes accuse states of failing to provide the services people need to stay in their homes and communities.
According to the U.S. Department of Health and Human Services, the law “requires that services be provided in an integrated setting that best meets the needs of individuals with disabilities.”
But struggling to find the services they need can push autistic people with mental health needs out of their communities. “We're seeing more families having to explore options outside of the county,” Bonnie Ivers, director of clinical services at the Orange County Regional Center, said last year.
Some Californians are also moving out of state: As of June 2022, there were 49 youth with “complex needs” receiving services outside of California, according to the Department of Developmental Services, and an additional 33 youth “at risk of being referred to out-of-state resources.”
The following year, that number grew to 57 out-of-state youths, with another 64 at risk of joining them. The actual figure may be higher. State officials have said they only find out about out-of-state placements if families notify the regional center that coordinates developmental disability services.
California Developmental Services Commissioner Nancy Bergman said the goal is to provide ongoing support so families “don't have to make the really difficult decision to not keep their child at home.”
California has launched more than a dozen crisis prevention-focused teams, called START Teams, that it says are helping people stay in their homes, including connecting families with different systems that support them, such as mental health and disability services.
But they're not yet present everywhere in the state. California also has mobile Crisis Assessment and Stabilization Teams, or CASTs, for people who have run out of other supports or are at risk of being moved to a more restrictive environment. The state had three of them as of the spring, according to the Department of Developmental Services.
Judy Mark, president of the disability advocacy group Disability Voices United, argued that trying to stabilize children by removing them from their families is counterproductive: When possible, she said, California should ensure ongoing support within the home, which she argued is less costly than placing children in STAR facilities.
But disability service providers say finding those caregivers remains a challenge, and state wages for those workers exceed what they could earn elsewhere. Wages for those providers have been gradually raised over time, with the next increase due in January.
In many cases, “the hope is that someone will be in the home around the clock to help parents,” said Larry Landauer, executive director of the Orange County Regional Center, “but we're severely understaffed in that regard.”
Any flaws in the system can come to light when young people with developmental disabilities hit adolescence, especially when they face “the inability to communicate during such a complex and confusing time,” said Hector Ramirez, a San Fernando Valley resident who has autism and serves as a commissioner on the California Disability Access Commission.
When autistic teens and their families don't get the support they need, “there's a compounding effect of things getting worse when they shouldn't be getting worse,” Ramirez said.
