By Annie Waldman
There was a time when Sharelle Menard thought her son would never be able to speak. She couldn’t soothe Benji when he cried, couldn’t read him books he could follow, couldn’t take him out in public.
“The screaming, and screaming, and screaming,” she said. “He would get so frustrated because he couldn’t communicate.”
Benji was nearly 3 when he was diagnosed with severe autism and soon after started specialized therapy to help him develop basic skills. After two years in treatment, his murmuring gave way to small words, with “bubbles” among the first.
To celebrate, Menard powered up a bubble machine she found at the dollar store, and for hours, they watched the iridescent orbs drift over their porch.
Menard, who is raising Benji alone in south-central Louisiana, began to picture a future for her son that diverged from the stories she’d heard about some kids with similar diagnoses, who grew up still unable to manage their frustrations and had to live in nursing homes or institutions.
But now, she’s worried again.
The insurer that has been paying for her son’s therapy, UnitedHealthcare, has begun — to the befuddlement of his clinical team — denying him the hours they say he requires to maintain his progress.
Inside the insurance conglomerate, the nation’s largest and most profitable, the slashing of care to children like Benji does have a reason, though it has little to do with their needs.
It is part of a secret internal cost-cutting campaign that targets a growing financial burden for the company: the treatment of thousands of children with autism across the country.
ProPublica has obtained what is effectively the company’s strategic playbook, developed by Optum, the division that manages mental health benefits for United. In internal reports, the company acknowledges that the therapy called applied behavior analysis (ABA) is the “evidence-based gold standard treatment for those with medically necessary needs.”
But the company’s costs have climbed as the number of children diagnosed with autism has ballooned; experts say greater awareness and improved screening have contributed to a fourfold increase in the past two decades — from 1 in 150 to 1 in 36.
So Optum is “pursuing market-specific action plans” to limit children’s access to the treatment, the reports said.
“Key opportunities” are outlined in bullets in the documents. While acknowledging some areas have “very long waitlists” for the therapy, the company said it aims to “prevent new providers from joining the network” and “terminate” existing ones, including “cost outliers.”
If an insurer drops a provider from its network, patients may have to find a new clinician that accepts their insurance or pay up to tens of thousands of dollars a year out of pocket for the therapy.
The company has calculated that, in some states, this reduction could impact more than two-fifths of its ABA therapy provider groups in the network and up to 19% of its patients in therapy.
Internal company documents reveal the strategy by Optum, a UnitedHealth Group subsidiary, to prevent ABA providers from participating in its network. Credit: Obtained by ProPublica.
The strategy targets kids covered through the company’s state-contracted Medicaid plans, funded by the government for the nation’s poorest and most vulnerable patients.
To manage Medicaid benefits, states often pay private insurers a fixed amount of funds per patient, regardless of the frequency or intensity of services used.
When companies spend less than the allotted payment, they are typically allowed to keep some or all of what remains, which federal investigators and experts acknowledge may be incentivizing insurers to limit care.
United administers Medicaid plans or benefits in about two dozen states and for more than 6 million people, including nearly 10,000 children with autism spectrum disorder.
Optum expects to spend about $290 million for ABA therapy within its Medicaid plans this year, and it anticipates the need increasing, documents show. The number of Medicaid patients accessing specialized therapy has increased by about 20% over the past year, with expenses rising about $75 million year-on-year.
So Optum — whose parent company, UnitedHealth Group, earned $22 billion in net profits last year — is “heavily investing” in its plan to save millions by limiting access to such care.
In addition to culling providers from its network, the company is scrutinizing the medical necessity of the therapy for individual patients with “rigorous” clinical reviews, which can lead to denials of covered treatment. Optum has developed an “approach to authorizing less units than requested,” the records state.
Internal company documents reveal Optum is deploying “rigorous utilization management” in response to an increased need for ABA therapy. Credit: Obtained by ProPublica.
Mental health and autism experts and advocates reviewed ProPublica’s findings and expressed outrage over the company’s strategy. Karen Fessel, whose Mental Health and Autism Insurance Project helps families access care, called the tactics “unconscionable and immoral.”
“They’re denying access to treatment and shrinking a network at a time when they clearly know that there is an urgent need,” she said.
United and Optum declined a request ProPublica made more than a month ago for an on-the-record interview about their coverage of behavioral health care.
They have not answered questions emailed 11 days ago, citing the Dec. 4 killing of UnitedHealthcare’s CEO as the reason.
In an email, a spokesperson said “We are in mourning” and could not engage with a “non-urgent story during this incredibly difficult moment in time.”
Offered an additional day or two, the company would not agree to a deadline for comment.
Benji, who is now 10, requires 33 hours of weekly therapy to be able to progress, his therapists have concluded. They have documented the consequences of having even a few hours less: toppled furniture, scratched-up classroom aides, a kid in unremitting tears, unable to learn.
But in a letter to Menard, Optum said it was refusing to pay for the full hours, stating that her son had been in therapy for too long and was not showing enough progress to ultimately graduate from it.
“Your child still has a lot of difficulty with all autism-related needs,” Optum wrote. “Your child still needs help, but it does not appear that your child will improve enough to end ABA.”
The response confounded experts who spoke with ProPublica, who said such an approach misunderstands the long-term nature of his condition.
“Challenges that often come with autism shouldn’t be looked at like an injury that you’re going to get better from quickly and then the treatment can stop,” said Christa Stevens, who directs state government affairs for the advocacy group Autism Speaks. “Treatment may still be medically necessary even if it’s for skill maintenance or the prevention of regression.”
The company’s denial also appears to contrast with recent professional guidelines for the therapy — which are cited as a reference in Optum’s own clinical criteria — that state “there is no specific limit on the duration of a course of treatment.”
The appropriate duration of treatment, according to those standards and experts interviewed by ProPublica, should be based on the patients’ needs, as evaluated by the clinicians working directly with the patients.
“This is a very blunt instrument to chase after excessive costs,” said Tim Clement, the vice president of federal government affairs at the nonprofit group Mental Health America.
Several advocates told ProPublica the company’s strategy is legally questionable.
The federal mental health parity law requires insurers to provide the same access to mental health and physical care.
As ProPublica recently reported, United has gotten in trouble in the past for targeting therapy coverage in a way that violates the law; while denying the allegations, it agreed to a multimillion-dollar settlement. It continues to use arbitrary and one-size-fits-all thresholds to scrutinize its therapy claims, ProPublica previously found.
It would raise legal questions if the company restricted ABA more stringently than comparable physical care, the advocates said.
“Medicaid managed care organizations are subject to the parity act,” said Deborah Steinberg, a senior health policy attorney with the nonprofit advocacy group Legal Action Center.
The company may be violating Medicaid regulations, she said, which require managed care organizations to maintain networks sufficient to provide covered services to all enrollees.
Last year, the federal government formally affirmed that ABA therapy is a protected benefit, and it recently investigated health plans for entirely excluding its coverage; legislators have passed laws in every state requiring insurance companies to pay for it.
“Yes, this therapy can be expensive,” said Dan Unumb, an attorney and president of the Autism Legal Resource Center. “But solving the problem by denying kids access to medically necessary care is a terrible solution.”
‘What happens if we withdraw the care?’
Benji dances with his behavior analyst, Whitney Newton, at Aspire Behavioral Health Center in Lafayette. Photo credit: Annie Flanagan, special to ProPublica.
Benji was making progress about three years ago.
For more than 33 hours a week in specialized therapy, his clinicians broke down the learning process into basic steps, using repetition and positive reinforcement to affirm behaviors. The state’s Medicaid contractor, UnitedHealthcare, covered the bill.
Researchers have found that about a quarter of kids diagnosed with autism are severely affected; these children are often minimally or non-speaking or require extensive assistance for basic daily needs.
“Things a lot of people take for granted,” said Menard.
While experts continue to debate which therapies are most effective and appropriate for these kids, ABA is one of the most widely recommended.
By seven, Benji had accumulated a few dozen words, and his aggressive, prolonged tantrums had grown less frequent, allowing his mother to take him grocery shopping and to mass on Sundays. It was time for him to go to school, she thought.
Menard enrolled him in their public school district, St. Martin Parish. He attended Breaux Bridge Primary twice a week in a special education classroom and continued therapy the other days.
Menard urged the district to allow a therapeutic technician to shadow him in school, but it refused. (The district declined to respond to ProPublica’s questions, citing privacy restrictions.)
With the diminished hours of treatment, Benji grew increasingly disruptive.
“It was a disaster,” said Menard. He snapped a swing in gym class and struggled to sit still during lessons. When teachers tried to give him instructions, he hit them. His speech plateaued and eventually regressed.
Menard, who cleans pools for a living, grew to fear the moment her phone rang. School employees, unable to soothe Benji’s tantrums, frequently called her to take him home…
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