Delays in diagnosis and treatment - The Pandemic factor

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the pandemic has exacerbated the already difficult process of getting services.

This comes as public awareness of autism and research on it have grown and insurance coverage for treatment is more widespread. In February, Texas became the last state to cover a widely used autism therapy through Medicaid. And all states now have laws requiring private health plans to cover the 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 who live in rural areas may face additional barriers to getting help.

“You would never allow a kid with cancer to experience these waits,” said Dr. Kristin Sohl, a pediatrician at University of Missouri Health Care and chair of the American Academy of Pediatrics’ Council on Children With Disabilities Autism Subcommittee.

During the early months of the COVID-19 pandemic, many families canceled in-home services, fearing infection. Virtual therapy often didn’t seem to work, especially for nonverbal and younger children. With fewer clients, some providers laid off staff or shut down entirely.

And treatment services always face high turnover rates among the low-wage workers who do direct, in-home care for autism. But COVID made the staffing problem worse. Companies now struggle to compete with rising wages in other sectors.

Diagnoses are typically done by developmental-behavioral pediatricians, psychologists, psychiatrists, and neurologists, all of whom are in short supply. The shortage of developmental pediatricians is especially acute. Even though they do three more years of fellowship training than a general pediatrician does, developmental pediatricians typically earn less.

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

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

Even in a metro area, getting a child an appointment can take months. “We cannot 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 evaluation with a private specialist, worsening disparities between kids 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 to get autism therapies, including applied behavior analysis, a process that aims to improve social, communication, and learning skills.

Accessing such treatment largely depends on insurance coverage — and for many families how well Medicaid pays. The Georgia Medicaid program reimburses well for ABA, Georgia doctors said, while Missouri’s pay is low, leading to a scarcity of options there, Sohl said.

In California, Medicaid reimbursement rates vary by county, and wait times for ABA range from about three to 12 months. In the rural northern reaches of the state, where few providers work, some families wait years.

Dr. Michelle Zeanah, a behavioral pediatrician, draws families from 60 mostly rural counties to her clinic in Statesboro, Ga. “There’s a massive shortage of people willing and able to do an autism diagnosis,” she said.

Getting insurance to pay for autism treatment can be another frustrating process for families. Therapy denials can be triggered by clerical errors or missed paperwork. Insurer approvals can be especially difficult for older children, who can 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, occupational, and physical therapy, all of which are generally easier to secure than behavioral therapy. But even then, Weintraub said, the insurers push back: “They really dictate how many services you can have. These families, literally, meet obstacles at every turn.”