Autism diagnosis and treatment times have lengthened further during the pandemic

Brandie Kurtz of Wrens, Georgia, said her son Wylie James Prescott had to wait more than a year after his autism diagnosis to start behavioral therapy, even though research shows early treatment for autism can be crucial for the long-term development of children. (Brandie Kurtz)

Wylie James Prescott, 3, had to wait more than a year after his autism diagnosis to start behavioral therapy, even though research shows early autism treatment can be crucial for long-term development children.

Her mother, Brandie Kurtz, said her therapy was only recently approved by Georgia’s Medicaid program, despite her continued requests. “I know insurance, so it’s even more frustrating,” said Kurtz, who works at a doctor’s office near her home in rural Wrens, Georgia.

These frustrations are all too familiar to parents who have a child with autism, a complex, lifelong disorder. And the pandemic has exacerbated the already difficult process of obtaining services.

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This comes as public awareness and research about autism has grown and insurance coverage for treatment is more widespread. In February, Texas became the latest state to cover a widely used autism therapy with Medicaid. And all states now have laws requiring private health plans to cover therapy, applied behavior analysis.

Yet children from Georgia to California often wait months — and in many cases more than a year — to get a diagnosis and then receive specialized treatment services. Therapies that can cost $40,000 or more a year are especially out of reach for families who don’t have insurance or have high-deductible health plans. Children from minority communities and those living in rural areas may face additional barriers to getting help.

“You would never allow a child with cancer to live up to those expectations,” said Dr. Kristin Sohl, a pediatrician at the University of Missouri Health Care and chair of the American Academy of Pediatrics Council’s subcommittee on Children With Disabilities Autism.

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 non-verbal and younger children. With fewer customers, some providers have laid off staff or closed altogether.

And treatment services still face high turnover rates among low-wage workers who provide direct home care for autism. But COVID has compounded the staffing problem. Businesses are now struggling to compete with rising wages in other sectors.

The Centers for Disease Control and Prevention estimates that autism affects 1 in 44 children in the United States, a prevalence rate higher than ever. Symptoms of autism can include communication difficulties and repetitive behaviors and can be accompanied by a range of developmental and psychiatric health issues.

An early diagnosis of autism can make a difference, Sohl said. The symptoms of some children who start therapy at the age of 2 or 3 years can be significantly reduced.

Diagnoses are usually made by developmental-behavioural pediatricians, psychologists, psychiatrists, and neurologists, all of whom are in short supply. The shortage of developmental pediatricians is particularly acute. Although they do three more years of training than a general pediatrician, developmental pediatricians generally earn less.

Trained general pediatricians can also do assessments, but insurers often require a specialist’s diagnosis before paying for services, creating a bottleneck for families.

“If we only rely on specialists, we risk failure because there aren’t enough of us. We need the insurance companies on board,” said Dr. Sharief Taraman, pediatric neurologist and president of the Orange County, Calif., chapter of the American Academy of Pediatrics.

Even in a metropolitan area, getting an appointment for a child can take months. “We can’t get these families in fast enough,” said Dr. Alan Weintraub, a developmental pediatrician in suburban Atlanta. “It’s heartbreaking.”

Some parents pay cash for an assessment with a private specialist, widening the disparities between children whose parents can afford to skip the wait and those whose parents cannot.

Once a child has been diagnosed, many face an equal – or longer – wait for autism therapies, including Applied Behavior Analysis, a process that aims to improve social skills, communication and learning. These sessions can take more than 20 hours per week and last more than a year. ABA techniques have some criticism, but the American Academy of Pediatrics says that most evidence-based autism treatment models are based on ABA principles.

Access to such treatment largely depends on insurance coverage and, for many families, the quality of Medicaid payments. The Georgia Medicaid program reimburses ABA well, Georgia doctors said, while Missouri’s pay is low, leading to a shortage of options there, Sohl said.

In California, Medicaid reimbursement rates vary by county, and ABA wait times range from approximately three to 12 months. In rural areas upstate, where few providers work, some families wait years.

During the first year of the pandemic, Claire Hise of Orange County was thrilled with the ABA therapist who worked with her son. But in January 2021, the therapist quit to return to school. The company she worked with sent others. Hise had to train each new therapist to work with his son, a difficult process that always took over a month. “It’s a special relationship, and every child with autism is an individual,” Hise said. “It takes time.”

By then they were out, replaced by another after no more than four to six weeks. Sometimes the family waited weeks for a replacement.

Hise tried to switch companies, but they all had a six-month waiting list. “He’s already so far behind,” Hise said. “It really is a year that I feel like I lost.”

The average age of diagnosis in the United States is about 4 years old, but black and Latino children are on average evaluated later than white children.

“The impact on families who have to wait for a diagnosis or treatment can be devastating,” said Kristin Jacobson, founder of the Autism Deserves Equal Coverage Foundation, an advocacy group in California. “They know in their gut that something is seriously wrong and there is help out there, and yet they are powerless to do anything about it.”

Araceli Barrientos helps run an autism support group in Atlanta for immigrant families, for whom language barriers can cause additional problems. It took her over a year to get her daughter, Lesly, diagnosed and two more years to get further treatment.

Sabrina Oxford of Dawson, in rural southwest Georgia, had to take her daughter Jamelyn more than 150 miles to the Marcus Autism Center in Atlanta to get her diagnosed. “You don’t have resources here,” Oxford said.

Behavioral pediatrician Dr. Michelle Zeanah attracts families from 60 mostly rural counties to her clinic in Statesboro, Ga. “There is a massive shortage of people willing and able to make an autism diagnosis,” he said. she declared.

Getting insurance to pay for autism treatment can be another frustrating process for families. Therapy refusals can be triggered by clerical errors or missed documents. Insurer approvals can be especially difficult for older children, who may be less likely to get treatment services than younger ones, said Dr. Donna Londino, a child and adolescent psychiatrist at Augusta University in Georgia. .

Many children with autism also need speech therapy, occupational therapy, and physical therapy, which are usually easier to get than behavioral therapy. But even then, Weintraub said, insurers push back: “They really dictate how many services you can have. These families, literally, encounter obstacles at every turn.

David Allen, spokesman for AHIP, an insurance industry trade group formerly known as America’s Health Insurance Plans, said insurers often require pre-approval to ensure services autism 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 from New York said she paid out of pocket for speech and occupational therapy for her son, Trey, now 15. Two years ago, after 18 months on a waiting list, he finally got insurance-covered ABA services.

“He’s doing so well,” she said. “My son was non-verbal. Now it’s bugging me.

This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and polls, KHN is one of the three main operating programs of the KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization providing information on health issues to the nation.

About Antoine L. Cassell

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