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PBS/NPR: Kids waiting months/years for autism diagnosis, even longer for services

Wylie James Prescott, 3, had to wait more than a year after his autism diagnosis to begin behavioral therapy, even though research shows early treatment of autism can be crucial for children’s long-term development. His mother, Brandie Kurtz, said his therapy wasn’t approved through Georgia’s Medicaid program until recently, despite her continued requests. “I know insurance, so it’s even more frustrating,” said Kurtz, who works in a doctor’s office near her home in rural Wrens, Georgia. Those 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 getting services…. 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. Kristi Sohl, a pediatrician at University of Missouri Health Care and chair of the American Academy of Pediatrics’ Council on Children With Disabilities Autism Subcommittee. … 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. The Centers for Disease Control and Prevention estimates that autism affects 1 in 44 U.S. children, a higher prevalence rate than ever before. Autism symptoms can include communication difficulties and repetitive behaviors and can be accompanied by a range of developmental and psychiatric health conditions…. 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, California, 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. These sessions can take more than 20 hours a week and last more than a year. ABA techniques have some critics, but the American Academy of Pediatrics says that most evidence-based autism treatment models are based on ABA principles. 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…. The average age of diagnosis in the U.S. is about 4 years old, but Black and Latino children on average are evaluated later than white kids.... Sabrina Oxford of Dawson, in rural southwestern 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 any resources around here,” Oxford said. Dr. Michelle Zeanah, a behavioral pediatrician, draws families from 60 mostly rural counties to her clinic in Statesboro, Georgia. “There’s a massive shortage of people willing and able to do an autism diagnosis,” she said…. Christa Stevens, director of state government affairs for Autism Speaks, said that the advocacy group is “very concerned” about the disparity of services between rural and urban areas. 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.” David Allen, a spokesperson for AHIP, an insurance industry trade group formerly known as America’s Health Insurance Plans, said insurers often require prior authorization to ensure that autism services are “medically necessary and evidence-based” and that patients are treated by “providers with appropriate education and training in treating autism.” Tracy-Ann Samuels of 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 ABA services covered by insurance. “He’s doing so great,” she said. “My son was nonverbal. Now he’s talking my ear off.”

Brandie Kurtz of Wrens said her son Wylie James Prescott had to wait more than a year after his autism diagnosis to begin behavioral therapy.

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