Kaiser autism care changes leave Stanislaus children in limbo. Insurer cites cost

Nicole Nixon said the proven therapy for her 9-year-old daughter on the autism spectrum ended last month.

Now, the Modesto mother is asking her health insurance provider to authorize other services but has no idea what might be offered.

Nixon filed a complaint with the California Department of Managed Health Care. Her insurance provider, Kaiser Permanente, wants to see the department’s ruling before the next step, she said.

“It could be maybe 30 days,” Nixon said. “No one called to check in with us. We were essentially left in the dark.”

At one time, the interventions of Applied Behavior Analysis (ABA) were the well-accepted standard for children with autism, who may need help to start speaking, reduce trantrums and acquire the skills of daily living. The intensive therapy is usually done at dedicated centers staffed by qualified professionnals.

But parents, at least in the Kaiser health system in Northern California, are sometimes being referred to less costly care models or having treatment interrupted.

Nixon said her daughter was late in starting behavioral therapy after she exhibited signs of autism at 2 to 3 years old. Kaiser first offered help with parenting techniques, but loud noises and unexpected changes triggered extreme meltdowns and the child didn’t receive help with learning daily life skills.

Kaiser eventually covered services at the Behavioral and Educational Strategies and Training Center (BEST) in Modesto for one-on-one therapy with behavioral staff, home visits and community outings.

About a year ago, a contractor for Kaiser served notice that its agreement with BEST was cancelled. Nixon and about 70 other families were expected to use other providers, while some were directed to a parent-led treatment approach. Many parents changed insurance to stay with BEST, but the costs of insurance or limited employee benefits made that impossible for some families.

Nixon opted for an extended year of care at BEST, which ended in August.

“A lot of kids that are not getting therapy are missing an opportunity they will never get back,” said Jonathan Bruno, executive director of BEST, the only remaining locally owned autism center in Modesto. “For a lot of kids, the therapy mitigated their symptoms.”

Catalight, the contractor for Kaiser, ended contracts with some other providers in Northern California. Its approach to reducing costs for payers has sent alarm through the region’s autism community. Kaiser Permanente has a membership of 450,000 in its Central Valley area, which mostly includes Stanislaus and San Joaquin counties.

Valerie Rogers, president of the California Association for Behavior Analysis, said the statewide group has received numerous reports from providers and families about treatment recommendations for Northern California Kaiser patients “that do not align with generally accepted standards of care in ABA-based services for individuals with autism.”

The CalABA statement said: “In many cases, the recommendations suggest lower-intensity treatment than what is typically supported by clinical guidelines and research.”

Some have criticized Catalight for redefining treatment options and trying to replace the standard ABA therapy, costing $700 to $1,800 per week, with a less costly parent-led model of intervention. Catalight, citing studies challenged by autism advocates, has asserted that higher hours of ABA therapy for autistic children do not result in better outcomes.

Catalight spokesman Keith Ferguson said via email that the contract with BEST was ended through a routine evaluation of providers in the contractor’s network. “Over the past year, we have worked with families to transition them to a new provider,” Ferguson wrote. “In some cases, families were able to remain with BEST for that full year to help with continuity.”

He added: “In all instances, our focus is on working closely with client families to transition them to a new provider.”

Kaiser Permanente has not issued a comment on the parents’ concerns.

Catalight’s website suggests the nation should consider the financial burden of autism and accept options less costly than center-based therapy. It refers to estimates of lifetime costs of $3.6 million per autism diagnosis and $15 trillion in societal costs between 1990 and 2029.

The CalABA statement countered that more restrictive access to effective treatment will only increase societal costs. “When individuals who need more intensive services are not authorized to receive them, they are less likely to achieve the outcomes associated with appropriate ABA-based intervention,” Rogers wrote. “As a result, these individuals may require longer-term interventions and high levels of care throughout their lifetime.”

Emily Schuman, a board-certified behavioral analyst in the Bay Area, said she’s aware of parents who were offered parent-led intervention by Catalight for newly diagnosed children. With that alternative approach, parents receive training in interventions through telehealth and, as nonprofessionals, work with their child at home on behavior goals.

“They are signing a lot of people up for parent-led services,” Schuman said. “Most parents don’t know they are entitled to more.”

Even a child on the autism spectrum who is not severely impaired will qualify for center-based services to meet individual needs, Schuman said.

Nixon said she and her daughter were initially in an online telehealth model including Zoom calls with other parents and their children. It wasn’t productive and she pushed for in-person services, Nixon said. Parent was offered training through telehealth

Kasey, a parent who asked that her last name be withheld, is another Stanislaus County resident who has dealt with Catalight, after her three young sons were diagnosed with autism. Her sons received the intensive ABA services from BEST in Modesto, starting in March 2024, but then Catalight ended its contract with the center.

Catalight offered remote telehealth services to Kasey’s family to replace the 15 hours of weekly in-home visits from certified staff that were provided by BEST, Kasey said. Two of her sons, under 5 years old, were nonverbal, and the third child was behind on language development for his age, Kasey said.

She said she didn’t think parent-led therapy would provide a breakthrough for the boys. “It made me feel like (telehealth) was the only option, and if I didn’t accept, we would lose services,” Kasey said. Her sons were variously in Levels 1 to 3 on the autism spectrum, requiring from support (Level 1) to very substantial support (Level 3).

“Telehealth was supposed to teach me how to do (the intervention),” Kasey said. “My sons were at the very beginning of their learning skills. It’s terrifying for a mother. We didn’t know what their cognitive abilities were.”

Rather than accept telehealth, Kasey learned Kaiser would allow a one-year extension with BEST. The extra year of therapy resulted in profound growth for her sons, she said. One child is speaking in sentences and is “a gifted little boy; he just did not know how to communicate,” Kasey said. The other two boys use short sentences and engage with peers.

Kasey said she’s contemplating how to get occupational and speech therapy for the kids and likely will leave the Kaiser system. Cost-cutting by another insurance company

A ProPublica report in December 2024 suggests that national insurance giant UnitedHealth is another insurer trying to contain costs of autism care. The article exposed an internal cost-cutting strategy that included barring new autism providers from the UnitedHealth network and cutting treatment providers that were more costly than others.

Another strategy was rigorous clinical reviews leading to a reduction of patients in treatment. UnitedHealth reportedly netted $22 billion in profits last year.

The costs for insurers is rising as autism rates have soared over 20 years, from one in 150 births to one in 31 in the lastest Centers for Disease Control and Prevention report in April. Experts believe an increase in diagnosing autism is a key factor in the prevalence rate.

Catalight makes its case for cost-savings directly on its website. In a white paper, it claims there are benefits to parent-led autism care that are being disregarded. The paper suggests that outcomes improve when clinical experts train parents to “weave behavioral interventions into the daily fabric of their child’s life.”

The parent-led option also benefits insurance or government payers, as well as health providers, by reducing stress and improving well being for parents, leading to healthier and more satisfied members, the paper says.

Catalight also says parent-mediated interventions offer a solution to issues facing modern behavioral health care, such as difficulties in many areas of the United States with finding qualified staff to work at autism treatment centers. Insurance companies in California also face challenges with meeting network capacity requirements in the midst of labor shortages.

The Council of Autism Service Providers maintains that ABA is the medically necessary and cost-effective treatment to help restore functioning for people with autism. The delivery model includes a treatment team of behavior technicians who work under supervision of a behavior analyst and two assistant analysts.

Recent years have seen some backlash against ABA, as adults who were treated as children complain it discouraged behaviors that are natural for individuals with autism.

Schuman said ABA interventions have evolved, so that staff at treatment centers are not targeting eye contact or self-calming behaviors as much. “For me, the gold standard is still ABA and it’s worrying that parents are having to find advocates to get access to care,” she said.

Nixon said her daughter attends regular classes at school and is fairly high functioning. The mother was wondering how she will receive professional advice on treatment needs for her daughter going forward.

“I have no plan,” Nixon said. “I will continue fighting.”

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