UnitedHealth is intentionally restricting access to essential therapies for children diagnosed with Autism.
Once upon a time, Sharelle Menard believed her son, Benji, would never be able to articulate his feelings. She struggled to comfort him when he cried, read him books he could comprehend, and even took him out in public. His constant wailing would lead to fits of frustration due to his inability to communicate.
Benji was nearly three when he was diagnosed with severe autism and promptly began a specialized therapy program to assist him in developing fundamental abilities. After two years of treatment, his mumbling evolved into brief words, with "bubbles" among the first to emerge. In celebration, Menard activated a bubble machine she found at the dollar store, and they spent hours watching the rainbow orbs fill their porch.
Menard, a single mother living in south-central Louisiana, began envisioning a future for her son that veered from the grim tales she'd heard about children with similar conditions, who struggled to control their emotions and ended up living in nursing homes or institutions.
However, her optimism is wavering once more.
The insurance provider that had been financing Benji's therapy, UnitedHealthcare, has started - in a manner that left his clinical team confused - denying him the hours they deemed necessary to maintain his developmental progress.
UnitedHealthcare, the nation's largest and most profitable insurance conglomerate, justifies this slashing of care for children like Benji as part of a covert cost-cutting campaign, albeit one that has little to do with the children's needs. It's a strategy aimed at curtailing the financial burden for the company due to the escalating treatment of thousands of children with autism across the country.
ProPublica obtained internal reports that essentially function as UnitedHealthcare's strategic roadmap, developed by Optum, their mental health benefits management division. These reports acknowledge that the therapy known as applied behavior analysis is the "evidence-based gold standard treatment" for children with "medically necessary needs" but express concern over the rising costs as the number of children diagnosed with autism has multiplied fourfold over the past two decades.
Optum has identified "opportunities" within various sections to limit children's access to this therapy. Despite acknowledging long waitlists for the therapy in some areas, the company aims to prevent new providers from joining their network and terminate existing ones, including higher-cost providers. Terminating insurance networks can result in families having to find a new clinician or pay tens of thousands of dollars out of pocket annually for the therapy.
The strategy primarily focuses on children covered by UnitedHealthcare's state-funded Medicaid plans, which cater to the nation's most impoverished and vulnerable patients. Complicating matters, Medicaid benefits are often paid to private insurers in a set amount per patient, regardless of the frequency or intensity of services utilized. If a company spends less than the allotted payment, they are typically permitted to keep any remaining funds, which federal investigators and experts believe may incentivize insurers to limit care.
UnitedHealthcare administers Medicaid plans or benefits in approximately 24 states and serves over 6 million people, including nearly 10,000 children with autism spectrum disorder. Optum anticipates spending around $290 million on ABA therapy within their Medicaid plans this year, with an expectation of rising costs.
In response to UnitedHealthcare's plan to save millions by limiting access to this care, Optum has increased its investments. In addition to eliminating providers from their network, the company is also meticulously assessing the medical necessity of the therapy for specific patients through rigorous clinical evaluations, which can result in denials of covered treatment.
Experts and advocates in the field of mental health and autism have reacted with outrage to Optum's strategy. Karen Fessel, of the Mental Health and Autism Insurance Project, referred to the tactics as "unconscionable and immoral."
"They're denying access to treatment while simultaneously shrinking the network at a time when there's a palpable need for it," said Fessel.
UnitedHealthcare and Optum refused our request for an in-depth interview regarding their coverage of behavioral health care. They have yet to respond to our email inquiries sent over a month ago, citing the Dec. 4 killing of UnitedHealthcare's CEO as the reason for their unavailability. Upon offering an extension, the company refused to set a deadline for comment.
Benji, now at the age of 10, needs a staggering 33 hours of weekly therapy to advance, as per the conclusions of his therapists. The professionals have reported the negative consequences of reduced therapy hours: overturned furniture, harmed aides, a distressed child unable to learn, and constant tears. Yet, Optum, in a letter to Menard, refused to cover the complete therapy hours, claiming Benji had been in therapy for too long and hadn't shown sufficient progress to graduate from it.
Optum's statement left experts perplexed, as quoted by ProPublica. These experts argued that long-term challenges associated with autism should not be viewed as conditions that would improve rapidly, requiring therapy to cease. Christa Stevens, the director of state government affairs for Autism Speaks, emphasized, "Challenges often accompanying autism should not be perceived like an injury having a quick recovery period, subsequently allowing the therapy to stop."
Optum's refusal seems to contradict recent professional guidelines, which are cited as references in their own clinical criteria and state, "There is no specific limit on the duration of a therapy course." The appropriate duration of therapy, as per these guidelines and experts interviewed by ProPublica, should be based on the patients' requirements, as assessed by the clinicians directly working with them.
Tim Clement, the vice president of federal government affairs at Mental Health America, stated, "This is a rather rough tool to chase after excessive expenses." Several advocates informed ProPublica that Optum's strategy is legally questionable.
The federal mental health parity law mandates insurers to provide equal access to mental health and physical care. ProPublica previously reported that United has faced issues in the past regarding therapy coverage infringing upon the law; although denying the allegations, it agreed to a multimillion-dollar settlement. It was also found to utilize arbitrary and standardized thresholds to review its therapy claims.
If Optum were to restrict ABA therapy more stringently than comparable physical care, the advocates suggested, it would raise legal concerns. Deborah Steinberg, a senior health policy attorney with the nonprofit advocacy group Legal Action Center, stated, "Medicaid managed care organizations are subject to the parity act." The company may be violating Medicaid regulations, she suggested, which require managed care organizations to maintain networks adequate to provide covered services to all enrollees.
Last year, the federal government officially confirmed ABA therapy as a protected benefit, and it recently investigated health plans for excluding its coverage entirely. Legislators have enacted laws in all states requiring insurance companies to pay for it. Dan Unumb, an attorney, and president of the Autism Legal Resource Center, concluded, "Yes, this therapy can be expensive. But denying kids access to medically necessary care is an unacceptable solution."
"What Happens if We Withdraw the Care?"
Benji had made progress roughly three years ago.
For over 33 hours a week in specialized therapy, his clinicians divided the learning process into essential steps, employing repetition and positive reinforcement to affirm behaviors. The bill was covered by the state's Medicaid contractor, UnitedHealthcare.
Researchers have found that about a quarter of children diagnosed with autism are severely impacted; these children often have limited or no speech or require extensive support for daily living necessities. "Things that most people consider normal," said Menard. While experts remain divided on which therapies are best for these children, ABA is one of the most frequently recommended.
By 7, Benji had acquired a few dozen words, and his prolonged, aggressive tantrums had become less frequent, allowing Menard to take him to the grocery store and mass on Sundays. She believed it was time for him to attend school.
Menard enrolled him in St. Martin Parish's public school district, where he went to Breaux Bridge Primary twice a week in a special education classroom and continued therapy the other days. Menard urged the district to enable a therapeutic technician to accompany him at school, but they refused. (The district declined to respond to ProPublica's queries, citing privacy restrictions.)
With the reduced hours of therapy, Benji's misbehavior worsened. "It was a disaster," said Menard. He destroyed gym equipment in class and found it hard to remain seated during lessons. When educators tried to give him instructions, he shook them violently. His speech plateaued and later regressed.
Menard, who works as a pool cleaner, started to fear each time her phone rang. School employees, struggling to calm Benji's tantrums, often called her to pick him up. One day last spring, they informed her that Benji had lashed out against an aide who attempted to convince him to work, viciously poking their hand with a pencil. Despite not breaking the skin, a series of similar incidents made the situation uncontrollable. The district made Menard sign a behavioral contract, his second in two years: If Benji misbehaved, he could be suspended or expelled.
Whitney Menard felt compelled to remove Benji from his current educational setting. She enrolled him permanently in a home-study program managed by his therapeutic organization, Aspire Behavioral Health Center in Lafayette, at a yearly tuition cost of approximately $10,000, a significant portion of her income. This expense was on top of the therapy fees, which were still covered by the insurance.
Benji's specialists recognized the necessity of his continuous engagement throughout the day and requested an increase in his therapy sessions from 24 hours per week to 33 from Optum. They thought the request would be authorized as it was less than the previous coverage and only nine more hours than the current payment.
However, Optum turned down the request in a letter sent to Menard in May. "Your child has been in ABA therapy for six years," the insurance company wrote. "After six years, more advancement should be anticipated."
Whitney Newton, Benji's behavior analyst and head director of Aspire, found the response disconcerting as it appeared to not align with established medical standards for ABA treatment. Seeing the vital role the therapy played in Benji's development, she asserted, "We understand his needs. It falls within our scope of practice, and as the provider, we have the right to deem it necessary."
The establishment, founded by psychologist Joslyn McCoy, often confronts insurance companies. With five centers accommodating about 160 patients between the ages of 2 and 19, a significant number have Medicaid coverage. In 2022, Louisiana expanded Medicaid guidelines, making complex medical care more accessible for families with higher incomes.
"Children now receive this pass to access this care, but when they attempt to employ it, it's being rejected," McCoy stated.
Optum audited her facility for payment integrity two years ago, demanding access to clinical and billing records. Upon submission of countless pages of evidence, Optum conducted an in-person review of the quality.
Internal Optum documents reveal the company focuses on scrutinizing ABA providers based on the amount they invoice and the number of services they provide. Centers like McCoy's may be marked for prescription patterns common in the delivery of ABA therapy, such as billing on weekends or holidays, serving several family members at one facility, having lengthy clinician days, supplying an 'above average' serving of services, or sudden modifications or decreases in patient or claim numbers.
McCoy confided in ProPublica that a company executive who visited her center for the review commended her work and advocated Aspire's expansion across Louisiana.
Despite Optum's continued resistance to individual therapy claims for her patients, McCoy pursued obtaining concrete evidence demonstrating the necessity of Benji's treatment. "We employ what is referred to as a return to basics, where we momentarily withdraw the treatment to observe its effects," McCoy stated.
Most of the therapy is driven by positive reinforcement, such as Benji earning a break on his iPad if he maintains his concentration on academic activities for a certain period. The reward is contingent upon Benji avoiding violent behavior for at least 10 minutes. During the experiment, the clinicians ceased offering incentives, leaving them with limited control to manage his behavior.
At first, Benji tested the boundaries with light hits, but when his actions didn't evoke a reaction, his behavior escalated. He caused disarray in the facility by throwing chairs and flipping tables. He assaulted Newton, pushing her into a bookshelf, and the bookshelf fell to the floor. He then inflicted harm on his aide by striking the walls and windows, eventually turning his aggression towards his aide. They ended the experiment early due to concerns for Benji's and their own safety.
Upon reimplementing the interventions, Benji calmed down.
Newton drafted a report, providing line charts illustrating Benji's behavior with and without the interventions, and photographs displaying her staff's injuries. She sent the report to Optum, requesting they reconsider the denial.
Optum maintained its position.
Last month, within a cubicle adorned with Minions and Mario Brothers posters, a behavior technician exhibited a shoe illustration to Benji.
"What is this?" she asked.
Benji pondered, running his fingertips along his baseball cap's brim and furrowing his brow. "Sh," he murmured, still grappling with the consonant.
"Shoes, that's correct," the technician explained. She displayed another illustration, depicting a slice topped with white frosting. "Is this cake?"
"No," Benji stated.
"Is this cake?" she repeated, before concluding, "yes."
"Yes," Benji echoed, but it appeared to annoy him. He struck the technician gently, yet resolutely.
"We'll disregard it," she reminded him, employing a sugary tone, "but keep your hands to yourself, OK?"
After 10 minutes, a timer beeped. It was time for Benji's reward, listening to a reggaeton hit by Daddy Yankee. "It acts as a significant reinforcer for us," Newton stated.
Although Optum denied the additional therapy hours, Benji has continued to receive them. "We offer the hours even if they weren't authorized," McCoy stated. "We don't believe it would be secure for him to do what the insurance recommends."
Next month, a state administrative law judge will consider an appeal for extra hours. If successful, Benji's healthcare professionals will be compensated for the six months of work they've done without payment.
However, even if they win, their battle with the insurance company will start anew. Typically, insurance approvals last just six months, and shortly after the hearing, the professionals will have to request coverage for Benji's treatment once more.
This request will be made at a time when internal records show Optum has deployed over 90 "care advocates" to challenge healthcare providers about the necessity of their patients' ABA treatment, under the guise of "improving quality and reducing costs."
Optum is focusing on states with high Medicaid costs for ABA therapy, such as Arizona, Nebraska, Tennessee, Virginia, New Jersey, Indiana, and Louisiana, where Menard and her son reside. ProPublica contacted these states' Medicaid agencies about their supervision of United's practices, but only Arizona's responded, stating that all managed care organizations must provide timely services within their networks and that they've been closely monitoring ABA networks (read their full response).
Autism experts argue that such a strategy may not only harm children but could also prove more expensive for states in the long term as children grow older and require more extensive services like residential or nursing care.
"If these kids receive the intervention they need as children," said Lorri Unumb, an attorney and CEO of the Council of Autism Service Providers, "there will be significant cost savings over their lifetimes."
Menard worries about her son's progress if he can't receive the necessary level of therapy. Even if the additional nine hours are approved, she fears a future denial that could be difficult to challenge.
"When you lose that motivation and momentum," she said, "it's so hard to regain it." She doesn't wish to change Benji; she just hopes therapy will help him advocate for himself and eventually stay safe. "There's nothing else that I've known to work," she said.
McCoy is frustrated at having to cut back on care that Benji needs because the insurer won't pay. "We don't want to discontinue therapy for our client who's not ready," she said.
Such denials discourage healthcare providers from working with insurance companies, she added, and can eventually cause private clinics to close. "The patients can't afford it," she said, "so eventually the private provider goes out of business."
However, children in need of care are not dwindling. McCoy's center currently has a waitlist of around 260 children. This list is likely to grow as Optum aims to exclude about 40% of Louisiana providers offering ABA therapy from its network, potentially affecting about 1 in 5 children covered by the company's Medicaid plan in the state.
"If the insurance company wants to deny our clients," she said, "we'll replace them. The need is not going away."
Menard is concerned about the future of her son's therapy, as UnitedHealthcare has been denying the hours necessary for Benji's developmental progress. This strategy by UnitedHealthcare, justified as a cost-cutting measure, could impact the future of children with autism who require evidence-based treatments like applied behavior analysis.
The lack of coverage for Benji's therapy hours has led to negative consequences, such as overturned furniture, harmed aides, and a distressed child unable to learn. Experts in the field have expressed outrage over Optum's strategy, referring to it as unconscionable and immoral, and advocates have suggested that it might be legally questionable.
