Wylie James Prescott, 3, had to wait more than a year after his autism diagnosis to start behavioral therapy, despite research showing that early treatment of autism can be crucial for children’s development.
Her mother, Brandie Kurtz, said Georgia Medicaid didn’t approve her therapy until recently, despite her continued requests. “I know how insurance works, so it’s even more frustrating,” said Kurtz, who works at a doctor’s office near her home in rural Wrens, Georgia.
Such frustrations are often experienced by parents of a child with autism, a complex lifelong disorder. And the pandemic has exacerbated the already difficult process of obtaining services.
This comes at a time when public awareness of and research on autism have increased, and insurance coverage for treatment is more widespread. In February, Texas became the latest state to cover a widely used autism therapy through Medicaid. And every state now has laws that require private health plans to cover the therapy, Applied Behavioral Analysis (ABA Method).
But many girls and boys, from Georgia to California, often wait months — and in some cases more than a year — to get a diagnosis and then receive specialized treatment services. The therapies, which can cost $40,000 or more a year, are out of reach for families with no insurance or high-deductible health plans. Children from minority communities and those who live in rural areas may face additional barriers to getting help.
“A child with cancer would never be allowed to experience this wait,” said Dr. Kristin Sohl, a pediatrician at the University of Missouri Health Care and chair of the Autism Subcommittee of the Council on Children with Disabilities at the American Academy of Pediatrics.
During the first months of the covid-19 pandemic, many families canceled home services, fearing infection. Virtual therapy often didn’t seem to work, especially for nonverbal and younger children. With fewer customers, some providers have laid off staff or closed entirely.
And treatment services always face high turnover rates among low-wage workers who provide direct, home-based autism care. But covid has compounded the problem of understaffing. Companies are now trying to compete with rising wages in other sectors.
The Centers for Disease Control and Prevention (CDC) estimates that autism affects 1 in 44 American children, a higher incidence than ever before. Symptoms of autism can include communication difficulties and repetitive behaviors, and can be accompanied by a whole host of developmental and psychiatric disorders.
Early diagnosis of autism can make a difference, Sohl said. The symptoms of some children who start their therapy at age 2 or 3 may be greatly reduced.
Diagnoses are usually made by developmental pediatricians, psychologists, psychiatrists and neurologists, professionals who are in short supply today. The lack of developmental pediatricians is especially serious. Although they must complete three more years of training than a general pediatrician, developmental pediatricians typically earn less.
Trained general pediatricians can also do evaluations, but insurers often require a specialist diagnosis before paying for services, creating a bottleneck for families.
“If we depend solely on specialists, we are headed for failure because there are not enough. We need the support of the insurance companies,” said Dr. Sharief Taraman, a pediatric neurologist and president of the Orange County, California, American Academy of Pediatrics.
Even in a metropolitan area, getting an appointment for a child can take months. “We can’t reach these families fast enough,” said Dr. Alan Weintraub, a developmental pediatrician in suburban Atlanta. “It’s heartbreaking.”
Some parents pay cash for an evaluation with a private specialist, exacerbating disparities between children whose families can afford to skip the wait and those who can’t.
Once a child has been diagnosed, many face an equal or longer wait for autism therapies, including applied behavior analysis (ABA), a process that aims to improve social, communication, and learning. These sessions can take more than 20 hours a week and last more than a year. The ABA method has some detractors, but the American Academy of Pediatrics states that most evidence-based autism treatment models follow ABA principles.
Access to this type of treatment is highly dependent on insurance coverage and, for many families, how well Medicaid pays. Georgia’s Medicaid program offers good reimbursement for ABA, according to Georgia doctors, while Missouri’s payment is low, creating a dearth of options, Sohl said.
In California, Medicaid reimbursement rates vary by county, and waiting times for ABA range from three to 12 months. In rural upstate areas, where few providers work, some families wait years.
During the first year of the pandemic, Claire Hise of Orange County loved the ABA therapist working with her son. But in January 2021, the therapist quit to go back to college. The company she worked with sent others. Hise had to train each new therapist to work with her son, a difficult process that always took more than a month. “It’s a special relationship, and each child with autism is an individual,” she explained. “It takes time”.
By then, they were coming and going, with substitutions after no more than four or six weeks. Sometimes the family waited weeks for a substitute.
Hise tried to change companies, but they all had a six-month waiting list. “My son is way behind,” Hise said. “It’s really a year that I feel like we’ve lost.”
The median age of diagnosis in the United States is about 4 years, but African American and Hispanic children are screened, on average, later than non-Hispanic whites.
“The impact on families who have to wait for diagnosis or treatment can be devastating,” said Kristin Jacobson, founder of the Autism Deserves Equal Coverage Foundation, a California organization. “They know that something is wrong and that there is help out there, and yet they feel powerless to do anything about it.”
Araceli Barrientos helps run an autism support group in Atlanta for immigrant families, for whom language barriers can be an additional barrier. It took her more than a year to get her daughter, Lesly, diagnosed, and another two years to get continued treatment.
Sabrina Oxford, of Dawson, in rural Southwest Georgia, had to drive her daughter Jamelyn more than 150 miles to Atlanta’s Marcus Autism Center to be diagnosed. “There are no resources around here,” Oxford declared.
Dr. Michelle Zeanah, a behavioral pediatrician, draws families from 60 mostly rural counties to her clinic in Statesboro, Georgia. “There is a huge shortage of people willing and prepared to make an autism diagnosis,” she said.
Getting insurance to pay for autism treatment can be another frustrating process for families. The denial of therapy may be due to administrative errors or the omission of paperwork. Insurance approvals can be especially difficult for older children, who may be less likely to receive treatment services than younger children, said Dr. Donna Londino, a child and adolescent psychiatrist at Augusta University in Georgia.
Many children with autism also need speech, occupational, and physical therapy, all of which are often easier to get than behavioral or behavioral therapy. But even then, Weintraub added, insurers balk: “They really dictate how many services you can have. These families literally encounter obstacles at every turn.”
David Allen, a spokesman for AHIP, an insurance industry group formerly known as America’s Health Insurance Plans, said insurers often require prior authorization to ensure autism services are “medically necessary and evidence-based” and that patients are treated by “providers with appropriate education and training in the treatment of autism.”
Tracy-Ann Samuels of New York said she paid for speech and occupational therapy for her son Trey, now 15, out of pocket. Two years ago, after 18 months on a waiting list, she finally received ABA services covered by insurance.
“Now he is doing very well,” he said. “My son did not speak. Now he won’t stop talking.”
KHN (Kaiser Health News) is the newsroom of KFF (Kaiser Family Foundation), which produces in-depth health journalism. It is one of three major programs of KFF, a nonprofit organization that analyzes the nation’s health and public health issues.