Are State Policies on Autism Treatment Limiting Access to Care for Children?

State health officials’ proposals for autism therapy in Medi-Cal — a relatively new  benefit — have ticked off many in the children’s advocacy world.

Autism therapy was ruled in September 2014 to be a Medi-Cal benefit, but getting that care to children has been a huge hassle, advocates said — and it promises to be more difficult if the draft letter to health plans becomes policy, they said.

“There are definitely some kids getting treatment now who weren’t getting care [a year ago]. But there has been an unacceptably slow implementation for the majority of Medi-Cal beneficiaries who still need the care,” said Kristin Jacobson, executive director of Autism Deserves Equal Coverage, a children’s advocacy group based in Burlingame.

Only a tiny fraction of the estimated 75,000 Medi-Cal children with autism are getting treatment for it, Jacobson said.

“The Department of Health Care Services has been enabling the health plans to avoid providing services by providing them cover and excuses,” Jacobson said. “They’ve not been forthcoming with information, they’ve made it very difficult for stakeholders to get information and there are huge waiting lists for providers and for diagnostic evaluations.”

DHCS officials declined to discuss the issue directly but consented to answer written questions with written answers.

Advocates Say Rules Limit Access

According to children’s health advocates, the recent all-plan letter distributed by DHCS outlining the state’s plans for accessing autism therapy services has a number of requirements that limit access rather than facilitate it. The advocates cite the following concerns:

  • The central complaint has been a lengthy diagnostic assessment that the state requires for every Medi-Cal beneficiary of autism therapy, even if a child has already been diagnosed. Getting that assessment has resulted in long waiting lists — up to six or nine months in some cases — for families trying to access care, advocates said. Because the state is bound by statute to provide care within 10 to 15 days of initial diagnosis, that lengthy wait violates federal law;
  • The state wants an assessment by a speech pathologist and occupational therapist before any treatment can begin. Those assessments are important, advocates said, but can be done once behavioral health treatments have started. Waiting until more assessments are completed further decreases timely access to care — and for a malady like autism, where early intervention can have better results, a delay in therapy can mean diminished effectiveness of treatment when it finally does begin, advocates said;
  • Therapy cannot be conducted in a school setting. This change in policy will disrupt the provision of care for some autistic children who currently get it in a school setting, advocates said;
  • A cap of 40 hours has been proposed for autism services, and any hours spent in school count against those hours. That essentially labels being at school as being a form of autism therapy, advocates said. The cap itself may violate federal guidelines, they added; and
  • Participating providers need to file a status update every month to managed care plans. This is particularly onerous to providers, advocates said, and will likely deter many of them from participating in caring for Medi-Cal children.

On top of all of that, Jacobson said, the state has an obligation not only to provide services but also to make sure families know they’re entitled to those services — which means evaluating how many children are getting therapy and encouraging providers to pursue autism diagnoses for Medi-Cal-covered treatment.

“[DHCS officials] are not getting that information, or they’re not sharing it,” Jacobson said. “But they certainly are not ensuring that timely access standards are met.”

There are an estimated 75,000 Medi-Cal children with autism in California. DHCS officials said nearly 3,000 Medi-Cal managed care members are currently receiving behavioral health therapy services, and thousands more have been referred for a comprehensive diagnostic evaluation and/or a behavioral assessment.

The State’s Position

According to written responses from Norman Williams, DHCS spokesperson, the state’s requirement for a comprehensive diagnostic evaluation will benefit Medi-Cal children by ensuring proper care and resulting in better outcomes.

“The primary purpose of a diagnosis is to provide guidance for intervention/treatment,” the statement said. “Accurate diagnoses lead to appropriate treatment, which leads to enhanced outcomes. Accurate diagnoses, patient safety and appropriateness of treatment services are the compelling reasons for a comprehensive diagnostic evaluation.”

Those evaluations have resulted in many different diagnoses that require different levels and types of treatment, state officials wrote. Those diagnoses included autism spectrum disorder, borderline intellectual disability, mild intellectual disability, genetic disorders [such as tuberous sclerosis], language disorders, attention deficit hyperactivity disorder, expressive language deficits, behavioral and sensory disorders, hearing and vision problems, anxiety and mood symptoms, trauma and/or depression. 

“While evidence-based data and literature support the initiation of behavioral health treatment services for those children who were diagnosed with autism spectrum disorder, behavioral health therapy services are likely not advisable for intellectual disability, genetic disorders, expressive language deficits, behavioral and sensory disorders, hearing and vision problems, anxiety and mood symptoms, trauma, and depression,” the statement said. “Behavioral health therapy services for children with these conditions could, in fact, exacerbate symptoms and do harm.” 

The evaluation is necessary to make sure children get the right level and type of care, state officials said. And the Medi-Cal managed care plans that provide those services, they said, are required to meet timely access standards. 

“This includes urgent appointments (for services that don’t need prior approval — 48 hours; and for services that do need prior approval — 96 hours); and non-urgent appointments (specialist appointment — 15 business days; and appointment for other services to diagnose or treat a health condition — 15 business days),” the statement said.

That answer applies to the requirements for evaluation before treatment by a speech pathologist and occupational therapist, state officials said. Allowing treatment before evaluation by those two specialists would compromise patient care, they wrote.

“The patient may not be diagnosed with autism spectrum disorder, and alternatively may have language deficits or other disorders, such as sensory disorders, that should be treated by a speech language pathologist or occupational therapist instead of behavioral health therapy services,” the statement said. “Without a comprehensive diagnostic evaluation it can be easy to miss how these areas are impacting the patient.”

The requirement to start monthly reporting by providers is necessary, state officials wrote, to ensure quality of care.

“DHCS has a systematic process to monitor enrollment or benefit package enhancements. It has been in place since 2010. When a change of this nature occurs, DHCS will collect certain data from managed care plans on a monthly basis for six months and then extend the reporting period to quarterly for at least another six months,” the statement said. “The purpose of this process is to ensure that a smooth transition is occurring for beneficiaries, and that medically necessary covered services are being provided.”

That reporting has long precedent at DHCS, officials wrote: “This process is not specific to a certain type of provider. Other transitions and benefit package changes that have fallen under this process include seniors and persons with disabilities, the Healthy Families program, rural expansion, Community-Based Adult Services, Cal MediConnect and managed long-term services and supports.”

The cap on hours does include school activities, state officials wrote, because “the beneficiary’s age, school attendance requirements and other daily activities must be considered when determining the number of hours of direct behavioral health therapy services and supervision.”

The reasoning for that, state officials wrote:

“Data and evidenced-based literature support focused treatment ranges of 10 to 25 hours per week, while comprehensive treatment may involve a higher intensity level, depending upon the age of the child and their ability to tolerate and participate in treatment and other required commitments. However, each case is based upon the beneficiary’s response to treatment, current needs, and abilities.” 

And finally, to address the concern that all of these requirements on providers and potential beneficiaries could limit or delay access to services, state officials wrote that accuracy of diagnosis is a central goal.

“Accurate diagnoses lead to earlier treatment, and treatment that is most appropriate,” the statement said. “This leads to enhanced patient outcomes. Accurate diagnoses, patient safety, and the appropriateness of medically necessary treatment services are DHCS’ priority.”

Negotiations Are Ongoing

The state temporarily halted stakeholder meetings in November but they are about to ramp up again, according to health officials.

“DHCS has not stopped the stakeholder input on this policy area and as key efforts get underway, DHCS will look to resume the webinar/in-person meetings,” the department’s written statement said. “State law requires DHCS to consult with stakeholders to develop and define eligibility criteria, provider participation criteria, utilization controls, and the delivery system for behavioral health therapy services, subject to the limitations allowed under federal law.”

That’s welcome news for Julie Kornack, senior public policy analyst at the Center for Autism and Related Disorders, based in Woodland Hills.

“Health plans have already started to reference it in denial letters,” Kornack said of the DHCS draft letter to health plans.

“It’s clear in the letter, [the tone is that] we’re going to make this more onerous than helpful,” she said. “This is the most onerous [set of requirements] I’ve seen in the country because of the multi-disciplinary requirements. A lot of this does not need to be a condition of accessing autism treatment.”

The state has denied there are any long waiting lists to get the diagnostic evaluations. Whenever advocates find someone who has had trouble accessing care, state officials help that person on an individual basis, Kornack said. That defuses individual complaints over access, but doesn’t address the tens of thousands of children and families who can’t get a timely evaluation or care, she said.

“This is hamstringing us,” Kornack said. “They need to authorize all medically necessary treatments. For them to put a cap on services, it’s like a medical doctor prescribing a medication, prescribing penicillin, and they say, ‘Well, we’ll give you half of it.'”

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