Longer delays for Autism and care during illness

Wylie James Prescott, 3, waited more than a year after his autism to begin training, even though research shows early treatment of autism can be critical for long -term development. children.

Her mother, Brandie Kurtz, said her medication had not been approved by Georgia’s Medicaid program until now, despite her requests. “I know insurance, so it’s more irritating,” said Kurtz, who works in a doctor’s office near his home in rural Wrens, Georgia.

Such problems are especially common in parents who have a child with autism, a life -threatening disease. And the disease has exacerbated the difficult process of accessing services.

This is due to the growing public awareness of autism and research about it and the wider range of insurance available to treat it. In February, Texas became the last state to cover a widely used autism drug through Medicaid. And all states have laws requiring private health plans to cover prescription drugs, research the nature of the evaluation.

But children from Georgia to California often wait months – and often more than a year – to get a medical diagnosis and then receive specialized medical services. Medicines that can cost $ 40,000 or more a year are not available to families without insurance or transferable health plans. Children from small communities and those living in rural areas can stand up to new barriers to get help.

“You don’t allow a child with cancer to see these expectations,” said Dr. Kristin Sohl, is a pediatrician at the University of Missouri Health Care and chair of the American Academy of Pediatrics ’Council on Children With Disabilities Autism Subcommittee.

In the early months of covid-19 disease, many families withdrew from home services, fearing the disease. Virtual training is not often seen, especially for nonverbal children and adolescents. With fewer customers, some service providers leave or are replaced.

And medical services consistently have high turnover rates among low -income workers doing directly in home care for autism. But covid is better than the problem of workers. Businesses are struggling to keep up with rising wages in other areas.

The Centers for Disease Control and Prevention estimates that autism affects 1 in 44 U.S. children, more than ever before. Autism symptoms can include speech problems and new behaviors and can be combined with a variety of developmental and psychiatric health conditions.

Early detection of autism can change, Sohl said. Some children may have significantly reduced symptoms when they start treatment at age 2 or 3.

Diseases are treated by developmental-behavioral pediatricians, psychologists, psychiatrists, and neurologists, not all of them are adequate. The shortage of developmental pediatricians is even greater. While they do three years of training before a pediatrician does, developmental pediatrics are much smaller.

Regular and trained pediatricians can perform assessments, but insurers often require a professional certification before paying for services, creating a bottleneck for families.

“If we just rely on the engineers, we’re setting ourselves up for failure because we don’t have enough. We need insurance companies on board,” said Drs. Sharief Taraman is a pediatric neurologist and president of the Orange County, California, division of the American Academy of Pediatrics.

Even on the metro, having a baby can take up to several months. “We can’t quickly introduce these families,” said Drs. Alan Weintraub, is a developmental pediatrician in the city of Atlanta. “It’s a heart attack.”

Some parents spend money on evaluation with a personal computer, the better the difference between children who can afford to wait and those who can’t afford to wait and those who can’t afford to wait.

When a child is identified, many people stand by – or for a long time – waiting for autism medications to be available, including a routine, a process that improves social, communication, and teaching skills. These sessions can take more than 20 hours a week and more than a year. ABA techniques have some criticisms, but the American Academy of Pediatrics says the majority of autism reports are based on patterns related to ABA factors.

Getting that kind of treatment depends heavily on insurance coverage – and for many families it pays for Medicaid. Georgia’s Medicaid program is making good returns for ABA, Georgia doctors say, even though Missouri’s wages are low, leading to fewer options there, Sohl said.

In California, Medicaid reimbursement costs vary by county, and the waiting times for ABA range from three to 12 months. In the northern part of the state, with fewer staff, some families have been waiting for years.

In her first year of illness, Claire Hise of Orange County was happy with the ABA physician who worked with her son. But in January 2021, the doctor left to go back to school. The company he works with sent others. Hise has to practice each new medication to work with her child, a difficult task that took more than a month. “It’s a special relationship, and every child with autism is one person,” Hise said. “It’s time.”

At that time, they went out the door, closed by someone after four or six weeks. Sometimes the family waits for prayers for a replacement.

Hise tried to change to another team, but they were all on a six -month waiting list. “He was far behind,” Hise said. “It’s a real year I think we lost.”

The average age of incidence in the U.S. is about 4 years, but black and Latino children on average are evaluated after white children.

“The impact on families waiting for illness or care can be devastating,” said Kristin Jacobson, founder of the Autism Deserves Equal Coverage Foundation, a support organization in California. “They knew in their stomachs that it wasn’t right and that help was there, but they couldn’t do anything about it.”

Araceli Barrientos helps run an autism support group in Atlanta for immigrant families, where speech therapists can increase snags. Her daughter Lesly was diagnosed with the disease for more than a year and two more years for further care.

Sabrina Oxford of Dawson, in southwestern Georgia, took her daughter Jamelyn more than 150 miles to the Marcus Autism Center in Atlanta to see her. “You don’t have resources around,” Oxford said.

Dr. Michelle Zeanah, a behavioral pediatrician, draws families from 60 more rural counties to her office in Statesboro, Georgia. “There are a lot of people who want and can develop an autism disorder,” he said.

Getting insurance to pay for autism care is a new challenge for families. Therapy denials can be caused by writing errors or past paperwork. Provider approval can be very difficult for young children, as young people have less access to medical services than young people, said Drs. Donna Londino is a child and adolescent psychiatrist at Augusta University in Georgia.

Many children with autism need language, occupation, and physical activity, all of which are much easier than medication. However, Weintraub said, insurers return: “They really dictate how much service you get. These families, of course, face challenges every now and then.”

David Allen, a spokesman for AHIP, an insurance company formerly known as America’s Health Insurance Plans, said developers often require prior consent to certify autism services. ” needs and testimonials ”and patients are cared for by appropriate providers. education and training in the management of autism. “

Tracy-Ann Samuels of New York said she paid out of pocket to speak and work for her son, Trey, now 15. Two years ago, later of 18 months on a waiting list, he received ABA services covered by insurance.

“She’s working hard,” she said. “My child has no mouth. Now he is talking in my ear.

KHN (Kaiser Health News) is a government news agency that publishes in -depth news coverage on health issues. KHN is one of three major projects at KFF (Kaiser Family Foundation). KFF is a non -profit organization that provides information on health issues in the nation.

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