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This story was originally published by Propublica.
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There was a time when Sharle Maynard thought her son would never speak. She couldn't comfort Benji when he cried, she couldn't read books he could follow, she couldn't take him out in public. “The scream, and the scream, and the scream,” she said. He gets very angry because he can't communicate.
Benji was only 3 years old when he was diagnosed with severe autism and soon began special therapy to help him develop basic skills. After two years of treatment, the murmur gave way to small words, among the first being “bubble.” To celebrate, Menard powered up a bubble machine she found at the dollar store, and for hours they watched the iridescent orbs float across the porch.
Menard, who is raising Benji alone in south-central Louisiana, begins to envision a future for her son that differs from the stories she's heard about other children with similar diagnoses who grew up unable to control their anger and had to survive. In nursing homes or institutions.
But now she is worried again.
The insurance that had been paying for her son's treatment, UnitedHealthcare, began – to the surprise of the clinical team – to deny him the hours he said he wanted to continue his growth. At the nation's largest and most profitable insurance corporation, he has reason to care for children like Benji, despite their needs. It's unrelated. It's part of a secretive internal cost-cutting campaign aimed at a growing financial burden for the company: treating thousands of children with autism across the country.
ProPublica got the company's strategic playbook right by Optum, the division that manages United's mental health benefits. The company in internal reports He acknowledges A therapy called functional behavior analysis is “the gold standard of evidence-based treatment for people with medically significant needs.” But the company's expenses increased as the number of babies increased. He was diagnosed with autism It has become a balloon; Experts say more Awareness And it has improved Check In the last two decades, they have contributed to a fourfold increase – from 150 to 1 in 36.
So Optum is “pursuing market-oriented action plans” to limit children's access to the drug, the reports said.
They are “key opportunities”. Listed. Shot in the documents. While he noted that some areas have “very long waiting lists” for the treatment, the company said it intends to “terminate” existing ones, including “to prevent new providers from joining the network” and “to reduce costs.” If an insurer drops a provider from its network, patients must find a new physician who accepts their insurance or pay up to tens of thousands of dollars a year out of pocket for the treatment. The company estimates that in some states, this reduction will affect from two-fifths of ABA therapy provider groups in network and up to 19% of their patients in therapy.
The strategy targets children covered by the company's government-contracted Medicaid plans, which are government-funded for the nation's poorest and most vulnerable patients. To administer Medicaid benefits, states often pay private insurers a fixed amount for each patient, regardless of the frequency or intensity of services used. When companies spend less than their allotted fees, they are usually allowed to keep some or all of the remainder, which the federal Investigators And Professionals Accreditation may be encouraging insurers to limit care.
United It manages Medicaid plans or provides benefits to nearly two dozen states and more than 6 million people, including nearly 10,000 children with autism spectrum disorders. Optum expects to spend about $290 million on ABA treatments in its Medicaid plans this year, and demand is expected to continue to grow, documents show. The number of Medicaid patients receiving the specialty treatment has increased by nearly 20 percent in the past year, and costs have increased to about $75 million a year.
So Optum — whose parent company, UnitedHealth Group, Found out Last year's net profit was $22 billion.High investment” by limiting such care in a plan to save millions.
In addition to removing providers from its network, the company is also investigating its service. Medical necessity Treatment for individual patients”Tight” clinical evaluations, which may negate covered treatment. Optum developed an “approach to allowing fewer units than requested,” the filings said.
Mental health and autism experts and advocates reviewed ProPublica's findings and expressed dismay at the company's strategy. Karen Fessel, who works with the Mental Health and Autism Insurance Project to help families find care, called the tactics “unconscionable and unethical.”
“They are withholding treatment and narrowing the network when they clearly know there is an urgent need,” she says.
United and Optum declined ProPublica's request for an on-the-record interview a month ago about behavioral health care coverage. Noting they didn't respond to questions emailed 11 days ago. December 4 assassination of the CEO of United Healthcare As a reason. In an email, a spokesperson said, “We are saddened” and unable to engage with a non-urgent story “at this incredibly difficult time.” He offered an extra day or two, the company disagreed with the deadline for the comment.
Benji, now 10, needs 33 hours of weekly therapy to make progress, the therapists concluded. They documented the consequences of taking even a few hours: abandoned furniture, scratched classroom assistants, a child in constant tears, unable to learn. But in a letter to Menard, Optum refused to pay full time, saying her son had been in therapy for too long and had not progressed enough to eventually graduate from it.
“Your child still has a lot of difficulty with all of the autism-related needs,” Optum wrote. “Your child still needs help, but your child doesn't seem to have progressed enough to eliminate ABA.”
His response baffled experts who spoke to ProPublica, who said such an approach did not understand the long-term nature of his condition. “Often the challenges with autism get better quickly and then treatment shouldn't be seen as a permanent injury,” said Krista Stevens, who directs the state government's Autism Specs team. Treatment may still be medically necessary, however, to maintain skill or prevent relapse.
The company's denial seems to be at odds with recent times Professional guidelines For the treatment – as a Ref According to Optum's own clinical criteria – “there is no definite limit to the duration of treatment”.
According to criteria and experts interviewed by ProPublica, the actual duration of treatment should be based on patient needs as assessed by clinicians who work directly with patients.
“This is a very bold tool to pursue excessive spending,” said Tim Clements, vice president of federal government affairs for the nonprofit group Mental Health America.
Several advocates told ProPublica that the company's strategy is legally questionable.
The federal Mental Health Equity Act requires insurers to provide Same access For mental health and physical care. ProPublica recently reported that United did He was already in trouble for targeting medical coverage in violation of the law; When he denied the allegations, a Million dollar settlement. He He continues to use it. ProPublica has already reached out to investigate therapy claims that are arbitrary and one-size-fits-all.
If the company prohibits ABA more strongly than comparable physical care, it raises legal questions, advocates say.
“Medicaid managed care organizations are subject to proportionality,” said Deborah Steinberg, senior health policy attorney at the nonprofit Center for Legal Action. The company may be violating Medicaid regulations, she said He asks To protect managed care organizations Networks enough To provide covered services to all subscribers.
Last year, the federal government officially confirmed that ABA therapy is a Protected Benefit, and soon It has been investigated Health plans to waive coverage entirely; Legislators passed laws in each state. Asking Insurance companies to pay.
“Yes, this treatment can be expensive,” says Dan Umb, attorney and president of the Autism Legal Resource Center. “But solving the problem by denying children access to medically necessary care is a terrible solution.”
Benji was making progress three years ago.
Over 33 hours a week in specialized therapy, the clinicians break down the learning process into basic steps, repetitions and positive reinforcement to ensure behaviors. The state's Medicaid contractor, UnitedHealthcare, covered the bill.
Researchers have found that about a quarter of children have found out They are with autism He was seriously injured; These children often have little or no speech or require extensive assistance with basic daily needs. “It's something that a lot of people take for granted,” Menard said. While professionals Continue the argument. Which treatment methods are the most Effective and appropriate ABA is one of the best for these children Widely recommended.
By 7, Benji had gathered a few dozen words, and his violent, long temper tantrums often subsided, allowing his mother to take him grocery shopping and pick up Sundays. It was time to go to school, she thought.
Menard enrolled him in his public school district, St. Martin Parish. He attended Breaux Bridge Primary twice a week in the special education class and continued therapy the rest of the days. Menard urged the district to allow a medical technician to hire him at school, but it refused. (The district declined to respond to ProPublica's questions, citing privacy restrictions.)
With reduced therapy hours, Benji became increasingly disruptive. “It was an accident,” Menard said. He had seizures in gym class and struggled to sit still during classes. Teachers beat him when they tried to instruct him. His speech became prominent and he eventually backed off.
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