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Autism Speaks

August 10, 2017

John R. Graham
Acting Assistant Secretary for Planning and Evaluation
200 Independence Ave SW
Washington, DC 20201

Attention: Laura Fuller

Submitted electronically via parity@hhs.gov

Re: Public Stakeholder Listening Session on Strategies for Improving Parity for Mental Health and Substance Use Disorder Coverage

Dear Ms. Fuller:

Autism Speaks is the nation’s leading autism awareness, science, and advocacy organization. We are dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families. We do this through advocacy and support, increasing understanding and acceptance, and advancing research and information.

We are writing to provide stakeholder input on improving parity for mental health and substance use disorder coverage. We are eager to see greater access to necessary treatments for individuals with autism spectrum disorder (ASD) resulting from your efforts to implement the Mental Health Parity and Addiction Equity Act (MHPAEA). In addition, we are eager to continue conversations with your department to ensure that children with ASD who are enrolled in Medicaid and CHIP are able to access necessary treatments.

ASD is a Mental Health Condition

The MHPAEA final rule states that mental health conditions are defined by the terms of the plan or health insurance coverage and "in accordance with applicable and federal state law…consistent with generally recognized independent standards of current medical practice (e.g., the most current version of the DSM, ICD or state guidelines)." We can see no legitimate argument from an insurer to ignore independent standards of current medical practice (the DSM 5) that ASD is a mental health condition subject to MHPAEA protections and believe that clear, strong guidance from HHS is required to make this abundantly clear to insurers.

Children with ASD Are Being Denied Access to Needed Services

Children with ASD who are enrolled in Medicaid and CHIP still do not have complete access to mental health treatments. The final MHPAEA rule notes that CHIP plans that cover Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefits are deemed in compliance with parity requirements. However, Autism Speaks does not believe the regulation is sufficient to ensure Medicaid and CHIP enrollees have parity protections. Multiple court cases have been brought on behalf of Medicaid enrollees with ASD under EPSDT that highlight the systemic failure to provide real access to behavioral and psychological services as required by EPSDT (see, for example, Chisholm v. Kliebert, 2013 U.S. Dist. LEXIS 101230 (E.D. La. July 18, 2013).

Based on the number of EPSDT actions related directly to denials of treatment for children with ASD, we do not agree that parity compliance can be presumed in EPSDT. Autism Speaks urges HHS and the Centers for Medicare & Medicaid Services (CMS) to clarify that coverage of EPSDT means that the plan provides all medically necessary services required by EPSDT, including intensive in-home services and applied behavior analysis treatment. We further urge CMS to require states to document CHIP plan compliance with EPSDT and parity requirements, including but not limited to non-quantitative treatment limitation (NQTL) requirements.

Adults with ASD Face Special Challenges

Although children with ASD have been a focus for complaints and litigation, the needs of adults on the spectrum should not be overlooked. In a study that reviewed the medical records of more than 2.5 million adults enrolled in the Kaiser Permanente Northern California health plan from 2008 to 2012, Dr. Lisa Croen and colleagues found higher than normal rates of nearly all major medical and psychiatric disorders in individuals with ASD. Fifty-four percent of all adults with ASD were diagnosed with a mental health or substance use disorder condition. The prevalence in the study population of mental health conditions and substance use disorder conditions among adults with and without ASD was as follows:

Chart of mental health and substance use disorder conditions comparing adults with ASD and without ASD.

  Adults with ASD Adults Without ASD
Alcohol Abuse 2.19% 2.92%
Alcohol Dependence 1.06% 1.36%
Anxiety Disorder 29.13% 9.13%
ADD 11.08% 1.35%
Bipolar Disorder 10.55% 1.67%
Dementia 2.26% 0.50%
Depression 25.75% 9.89%
Drug Abuse 2.59% 2.77%
Drug Dependence 1.79% 2.16%
OCD 7.63% 0.49%
Other Psychoses 6.30% 0.55%
Schizophrenia 7.83% 0.37%
Suicide Attempts 1.79% 0.32%

As the chart illustrates, the risk of most psychiatric conditions was significantly elevated in adults with ASD compared to adults without ASD. Of special note is the heightened risk of suicide attempts. Other studies, including a recent population-based study in Sweden that found a marked increase in premature mortality among individuals with ASD, also suggest a heightened risk of self-harm.

Adults with ASD face unique challenges in accessing mental health and substance use disorder services, challenges that compound the general lack of awareness of the need for these services. The Kaiser study and the Sweden study highlight the psychiatric conditions that affect adults with ASD and point to the importance of enforcing parity in mental health and substance abuse disorder benefits.

Impermissible Treatment Limitations Continue

We believe HHS can do more to address treatment limitations that run counter to MHPAEA. Even where coverage is provided, limitations remain in place on many autism treatments, and we urge HHS to address this specifically as it relates to services for ASD. Both quantitative (QTL) and non-quantitative treatment limitations (NQTL) are being used by insurers to limit access to treatments. Many states allow issuers to place QTLs on autism treatment such as hourly, age, and dollar caps on treatments. NQTLs such as prohibiting treatment for children school hours and limiting treatment to certain settings also remain in place.

Of particular significance are NQTLs pertaining to pediatric formularies, network access for pediatric providers, pediatric services that are out-of-network, and EPSDT medical necessity and prior authorization policies. Specific examples of NQTLs that we believe run contrary to MHPAEA include:

  • requiring individuals with valid ASD diagnoses performed by licensed physicians or psychologists using valid instruments to be re-diagnosed with ASD under the DSM-5 by a certain type of practitioner using a certain instrument before services can begin;
  • imposing restrictive medical necessity criteria such as requiring self-injurious, aggressive, or other severe behavior to access ASD treatment, but allowing full access to medical treatment to treat the full range of symptoms attendant to medical/surgical conditions;
  • imposing specific experience-based criteria on ASD providers but not imposing criteria on providers of treatment of medical/surgical conditions; and
  • not recognizing supervised experience such as practicums engaged in by ASD providers as part of their professional accreditation, but recognizing similar experienced-based credentials of medical/surgical providers.

Finally, some states are still allowing issuers to sell plans that categorically exclude autism treatments or specific types of treatments (such as applied behavior analysis). HHS should advise states that such categorical exclusions violate parity.

We remain optimistic that through more effective enforcement of MHPAEA, HHS can better ensure that individuals with autism have access to the treatments they need on a par with other medical services. We would welcome the opportunity to discuss this further with you and your staff. Please contact Stuart Spielman, Senior Policy Advisor and Counsel, at sspielman@autismspeaks.org or (202) 955-3312.


Kevin F. Roy
Executive Vice President, Advocacy

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Content created by Assistant Secretary for Public Affairs (ASPA)
Content last reviewed on October 17, 2017