Autism in America
While Autism treatments have improved, families still face an uphill battle
“My dad says that ‘Every rabbi has only one sermon, and they spend their entire lives trying to perfect it.’ So, this is my effort … to try and continue to perfect that sermon,” said Dr. David Mandell in his presentation titled “The Broken Links Between Policy and Practice in Autism Care.”
Mandell was chosen to deliver the Seventh Annual Lurie Institute Distinguished Lecture in Disability on Nov. 8 in the Heller School for Social Policy and Management because of his pioneering work in the field of autism research and policy. He obtained a Bachelor of Arts degree in psychology from Columbia University and a Doctorate of Science from Johns Hopkins School of Hygiene and Public Health. Since then, he has authored over 100 peer-reviewed scientific papers and is now a professor of psychiatry and pediatrics at the University of Pennsylvania’s Perelman School of Medicine, the associate director of the Center for Autism Research at the Children’s Hospital of Philadelphia, a member of the Interagency Coordinating Council for the United States Department of Health and Human Services and a consultant for Philadelphia agencies developing policy in autism care.
After a warm welcome by Dr. Monika Mitra, director of the Lurie Institute for Disability Policy, Mandell began his presentation with a picture — or rather, a picture of a postcard — of Norristown State Hospital in 1903. “These were beautiful places. They were considered bastions of quality care,” explained Mandell. “And we liked them so much we put them on postcards.”
While working at the psychiatric hospital for the Bureau of Autism Services in 2009 to look for adults who may have been misdiagnosed with schizophrenia, he learned about the case of a boy named Ben, who was admitted to the hospital in 1955. There were 100 million people living in the United States at the time, and 550,000 of them (more than half a percent) had spent at least one night in a state psychiatric hospital that year — the normal protocol for treating individuals with disabilities.
As a kid, Ben did a lot of things considered abnormal. He would flap his fingers in front of his face, repeat phrases and reverse pronouns. He also struggled to behave in school. His parents brought him to a neurologist, who thought that Ben was “retarded” and recommended that they put him in a state institution. His mother refused and went looking for other answers.
She found psychiatrist Leo Kanner at Johns Hopkins (who had coined the term “autism” and is now known as the “father of child psychiatry”). Mandell believes that Ben was likely one of the first hundred people that Kanner diagnosed with autism. He recommended that Ben be placed in one of Pennsylvania’s state hospitals or with a “dog patch family” to avoid social embarrassment for his sister. “This is the first time I’ve heard this term, ‘dog patch family,’” said Mandell, explaining that it meant “a rural family that’s not concerned with social niceties.”
Ben’s mother refused and kept him at home, but when he became increasingly violent toward his sister, she felt she had no choice but to institutionalize him. “And I know this because we spoke to her,” Mandell revealed. “She was 92 years old. And this boy, now a man, was still at that hospital. And she was still agonizing about this decision that she had made and how difficult it was for her — how she was still second-guessing herself 50 years later.”
Mandell and his team confirmed Ben had autism and worked with the psychiatrist to reduce the amount of medication he took. Then, as far as anyone working at the hospital could remember, he spoke for the first time to say that he was very angry at the hospital staff.
Mandell sympathizes with Ben’s story, using it to highlight how mental health policy has improved since then, moving toward the integration of individuals with disabilities into their communities rather than isolating them in hospitals. Among the policies he mentioned were the Community Mental Health Act of 1963, the passage of Medicaid in 1965, the Education of all Handicapped Children Act of 1976 (now the Individuals with Disabilities Act), the Medicaid waivers created in the 1980s and the passage of autism insurance waivers in the 2000s.
Despite this progress, Mandell’s survey of children with autism born from 1993 to 1994 compared with those born from 1994 to 1995 showed more hospitalizations in the latter cohort. To solve the problem, he examined two sets of policies: autism insurance mandates and autism waivers (Massachusetts has both).
He displayed a graph showing that as of now, 45 states have passed autism insurance mandates. These require private insurance companies or commercial insurance products to cover autism services and prevent them from categorically excluding autism as a covered condition or offering insufficient services. As he noted, however, the mandates apply mainly to people who have employer-based insurance, or about 50 percent of working families in the United States.
Mandell’s research found that states with the mandates had an increase in the diagnosis and funding for autism care of about $150 per month. Similar work analyzing mental health parity revealed an increase in funding of only $150 per year compared to states without mandates. In other words, autism-specific legislation, rather than grouping autism under general mental health policy, arguably provides 12 times more funding for individuals with autism, according to Mandell.
When he and a colleague compared Medicaid to private insurance, they found that the former exceeds the latter in every component except in-patient services, with average expenditures of $20,000 per year for Medicaid outpatient services compared to $4,000 per year for private outpatient services. “So, when we think about what policies are important to individuals with autism, those public policies are maybe more important than those that affect private insurance,” he said.
His research also showed that it takes time to see the effects of new laws. “The law was passed, and then insurance companies were scrambling to try and meet it because they didn’t have provider networks,” he said. “It tells us that passing the legislation may not be enough. You also need to have the infrastructure to support those services.”
Only 13 states have autism waivers, Mandell noted. Like autism insurance mandates, waivers lower the number of individuals with autism hospitalized by either providing services not traditionally covered on state plans or enrolling groups of people that would otherwise be ineligible. His research substantiated this, indicating in the given states that only 2 percent of kids with disabilities on the waiver were hospitalized compared to 5 percent of kids not on the waiver. Those on the waiver received more spending and outpatient visits per month as well.
Mandell explained how these waivers actually save states money if they make enough of an investment on their dollar caps (the maximum amount of money a state will spend per child). This keeps more kids in their communities instead of in long-term hospital care, lessening overall spending on them. It also reduces the number of parents reporting unmet needs for their children, especially for families living in poverty, according to a Center for Disease Control survey Mandell mentioned.
He then looked at the services themselves to see which were most effective in keeping individuals with autism out of the hospital. He found that respite care, by giving families a break and providing trained support in the home, was the most effective service in keeping kids in their communities. “Sometimes hospitalization as a long-term care is justified. Sometimes it’s what’s in the best interest of the individual,” Mandell said. “But too often I think it represents a failure of the system rather than the needs of the individual.”