Delays in autism diagnosis and treatment have increased during the pandemic

“If we rely only on specialists, we doom ourselves to failure, because we are few. We need insurance companies on board,” the doctor said. Sharif Taramanpediatric neurologist and president of the Orange County, California chapter of the American Academy of Pediatrics.

Even in the metro area, making an appointment for a child can take months. “We can’t bring these families together fast enough,” the doctor said. Alan Weintraub, a developmental pediatrician in suburban Atlanta. “It’s heartbreaking.”

Some parents pay out-of-pocket to be examined by a private specialist, exacerbating the disparity between children whose parents can afford to skip the wait and those whose parents cannot.

After a child is diagnosed, many face the same or longer waits for autism treatment, including applied behavior analysis, a process aimed at improving social, communication and learning skills. These classes can take more than 20 hours a week and last more than a year. ABA methods there are criticsbut the American Academy of Pediatrics states that most evidence-based treatment models for autism based on ABA principles.

Access to such treatment depends largely on insurance coverage and, for many families, how well Medicaid pays. Georgia’s Medicaid program compensates ABA well, doctors say, while Missouri’s pay is low, leading to a dearth of options, Saul said.

In California, Medicaid reimbursement rates vary by county, and ABA waiting times vary from three to 12 months. In rural upstate areas where there are few providers, some families have been waiting for years.

In the first year of the pandemic, Claire Hayes of Orange County was delighted with the ABA therapist who worked with her son. But in January 2021, the therapist quit to go back to school. The company she worked with sent others. Haise had to train each new therapist to work with her son, a complex process that always took more than a month. “It’s a special relationship, and every child with autism is an individual,” Hayes said. “It takes time.”

By that time they were already out the door, and they were replaced by others no later than four to six weeks later. Sometimes the family waited weeks for a replacement.

Hayes tried to move to another company, but everyone had a six-month waiting list. “He’s already so far behind,” Hayes said. “It’s really a year, I feel like we’ve lost.”

That median age at diagnosis in the US about 4 years, and black and Hispanic children on average evaluated later than white children.

“The impact on families who have to wait for diagnosis or treatment can be devastating,” said Christine Jacobson, founder of the Autism Deserves Equal Coverage Foundation in California. “They understand that something is seriously wrong and that there is help out there, but they are helpless to do anything about it.”

Aracely Barrientos is helping organize an autistic support group in Atlanta for immigrant families who may find language barriers an added barrier. It took her over a year to diagnose her daughter Leslie and another two years to secure further treatment.

Sabrina Oxford, from Dawson in rural southwest Georgia, had to drive her daughter Jamelyn over 150 miles to the Marcus Autism Center in Atlanta to have her diagnosed. “You don’t have any resources here,” Oxford said.

Dr. Michelle Zeana, a behavioral pediatrician, brings families from 60 predominantly rural counties to her clinic in Statesboro, Georgia. “There is a huge shortage of people who are willing and able to diagnose autism,” she said.

Getting insurance to pay for autism treatment can be another frustrating process for families. Treatment denials may be due to clerical errors or missing paperwork. Insurance company approval can be especially difficult for older children, who are less likely to receive treatment than younger children, the doctor said. Donna Londoninochild and adolescent psychiatrist at Augusta University in Georgia.

Many children with autism also need speech, occupational, and physical therapy, which are generally easier to provide than behavioral therapy. But even then, according to Weintraub, insurers object: “They really dictate how much coverage you can get. These families literally face 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 prior authorization to ensure that autism treatment services are “medically necessary and evidence-based” and that patients are treated by “providers with appropriate education and training in the treatment of autism”.

Tracey-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 the waiting list, he finally got ABA covered services.

“He’s doing great,” she said. “My son was non-verbal. Now he speaks in my ear.

Kaiser Health News is a national health policy news service. It is an editorial independent program of the Henry J. Kaiser Family Foundation and not affiliated with Kaiser Permanente.

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