[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
December 26, 2012
Submitted via the Federal eRulemaking Portal: http://www.regulations.gov
Center for Consumer Information and Insurance Oversight Centers for Medicare & Medicaid Services
Department of Health and Human Services
Patient Protection and Affordable Care Act; Standards Related to Essential Health Benefits, Actuarial Value, and Accreditation
Dear Director Cohen:
Autism Speaks is the nation’s leading autism science and advocacy organization, dedicated to funding research, increasing awareness, and advocating on behalf of individuals affected by autism and their families. We write to comment on Patient Protection and Affordable Care Act; Standards Related to Essential Health Benefits, Actuarial Value, and Accreditation. This proposed rule was published on November 26, 2012, at volume 77, page 70,644, of the Federal Register. We limit our comments here to the standards related to essential health benefits.
I. All Health Insurance Coverage in the Individual or Small Group Market Should Provide Coverage of Behavioral Health Treatment for Autism
On January 31, 2012, Autism Speaks commented on the Essential Health Benefits Bulletin.1 Our remarks focused on autism and the public health challenge that it presents, as well as the approach taken by the Bulletin in addressing that challenge. At the time we made our comments, autism was believed to affect about 1 in 110 children in the United States. We now know that autism affects at least 1 in 88 children in the United States (1 in 54 boys), and most likely more: a recent study in South Korea reported a prevalence of about 1 in 38 children, including 1 in 27 boys. At the time we made our comments, the cost of autism to the nation was thought to range from $35-$90 billion annually. More recent research now estimates that cost to have reached
1 See attachment.
$137 billion per year. In hindsight, our comments understated the challenge autism poses to the United States. Families are in crisis. We have an autism epidemic.
Merely having some form of health insurance available will not address this epidemic. The dimension of the challenge is revealed by the National Survey of Children with Special Health Care Needs, 2009/2010. Nearly half of insured families who have a child with autism (46.5 %) report that their child’s health insurance coverage is inadequate to meet their needs, while only a third (33.3%) of insured families who have a child with a different special need have the same complaint. In addition, more than twice as many families with a child on the spectrum say their child’s health condition has caused financial problems for the family (43% as compared to 19.6% of families who have a child with different special needs).
These data underscore the need for robust and consistent coverage of behavioral health treatment by all EHB-benchmark plans (as defined in proposed section 156.20). Controlled clinical trials have shown that early intensive behavioral intervention significantly increases IQ, language abilities, and daily living skills, while reducing the symptoms of autism. Behavioral interventions that use the methods of applied behavior analysis (ABA) have become widely accepted among health care professionals as an effective treatment for autism.2 Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning. The efficacy of these behavioral interventions has led 32 states (where 75% of all Americans live) to enact comprehensive autism insurance laws.3 Other states are actively considering similar enactments.
Under the proposed rule, the behavioral health treatment coverage state autism insurance laws call for is an optional state-required benefit. If a base-benchmark plan does not include this coverage, the proposed rule would not require the plan to be supplemented. Moreover, if a state required a qualified health plan to offer benefits in addition to the essential health benefits, the state would be required to defray the cost of the added benefits. The proposed rule creates a safe harbor that allows some autism coverage, but only for state-required benefits enacted before 2012. Autism insurance laws enacted this year (2012) would fall outside the safe harbor, as would autism insurance laws enacted in future years. State efforts to address the health challenges faced by families would be chilled for years to come. We urge you to consider waiving the payment rule of proposed section 155.170(b) to allow states to continue what has been a progressive march towards comprehensive coverage for autism treatments.
2 “AAP has endorsed the use of ABA treatments when determined appropriate by physicians within a medical home, in close consultation with families.” Testimony of Dr. Vera F. Tait, Am. Acad. Pediatrics, before the Subcomm. on Pers., Senate Armed Serv. Comm. (June 20, 2012)
3 Prior to 2007, only a single state (Indiana) mandated autism coverage. In 2007, two states enacted laws requiring coverage for ABA and other autism services; in 2008, five states passed such laws; in 2009, seven states; in 2010, eight states; in 2011, six states, including California and New York; and in 2012, three states.
Flexibility on state-required benefits will mitigate, but not cure the defects in the current regulatory framework. Failing to categorize behavioral health treatment for autism as a mandatory element of the EHB package is not only bad health policy but bad statutory construction as well. In our January 31st comments on the Bulletin, we discussed at great length Congress’s intent in adding language about behavioral health treatment. That intent was captured in a letter, also dated January 31, to Secretary Kathleen Sebelius from U.S. Senator Robert Menendez (New Jersey):
I wanted to bring to your attention a concern I have with the Essential Health Benefits (EHB) Bulletin released on December 16, 2011. I am particularly concerned with how this bulletin addresses the coverage of behavioral health services generally, and autism services specifically.
As you know, section 1302(b) of the ACA outlines the ten benefit categories that all qualified health plans must provide, with section 1302(b)(E) [sic] explicitly stating that “mental health and substance use disorder services, including behavioral health treatment” be included. This language originates with an amendment I included during the Senate Finance Committee’s markup of the legislation. During the Committee’s discussion of this amendment, it was made explicitly clear that it was intended to cover the behavioral health services associated with autism treatments and therapies. . . .
While the bulletin takes the approach that . . . behavioral health falls outside the scope of a “typical employer plan,” I believe it actually underscores the need for uniform, national standards. My amendment’s language is specifically targeted to provide uniformity in available benefits and security to families coping with ASD, regardless of their health insurance plan or state’s mandate (emphasis added).
Just as all EHB-benchmark plans must provide pediatric oral services and pediatric vision services, so should they provide behavioral health treatment for autism as a component of mental health and substance use disorder services. The proposed rule recognizes that pediatric oral services and pediatric vision services are not included in many health insurance plans and describes special rules to ensure meaningful benefits in those categories. A base-benchmark plan lacking behavioral health treatment for autism should be supplemented as well. Every word of section 1302(b)(1)(E) must be given effect.
II. Information on the Coverage of ABA by Proposed State Essential Health Benefit Benchmark Plans Should be Clarified or Corrected as Necessary
The summary information table on proposed state essential health benefits benchmark plans on the resources page of the Center for Consumer Information & Insurance Oversight website (http://cciio.cms.gov/resources/data/ehb.html) shows coverage of ABA by benchmark plans in the following states:
Arizona — Other Benefits, Row Number 18 (Column A: blank)
Arkansas — Other Benefits, Row Number 8 (Column A: “Other”)
California — Benefits and Limits, Row Number 33 (Column A: “Habilitation Services”)
Indiana – Other Benefits, Row Number 8 (Column A: “Other”)
Kentucky – Other Benefits, Row Number 8 (Column A: “Other”)
Louisiana — Other Benefits, Row Number 7 (Column A: “Other”)
Maine — Other Benefits, Row Number 8 (Column A: “Other”)
Massachusetts – Other Benefits, unnumbered row (Column A: “Other”)
Missouri — Other Benefits, Row Number 8 (Column A: “Other”)
Montana — Benefits and Limits, Row Number 33 (Column A: “Habilitation Services”)
Nevada — Other Benefits, Row Number 8 (Column A: “Other”)
New Hampshire — Other Benefits, Row Numbers 8-9 (Column A: “Other”)
New York – Other Benefits, Row Number 14 (Column A: “Other”)
Texas – Other Benefits, Row Number 1 (Column A: “Mental/Behavioral Health
Vermont — Benefits and Limits, Row Number 33 (Column A: “Habilitation Services”)
West Virginia – Other Benefits, Row Number 2 (Column A: “Mental/Behavioral Health
Wisconsin – Other Benefits, Rows 16-18 (Column A: “Other”)4
For West Virginia, the list of state required benefits should be conformed to the summary of essential health benefits, which correctly shows coverage of ABA by the benchmark plan.
ABA coverage is less clear for the following states:
Colorado – Other Benefits, Row Number 16, describes a benefit for “Autism Spectrum Disorder” in Column C. We assume that this benefit is the benefit for Applied Behavior Analysis Based Therapies noted under the State Required Benefits.
Connecticut — Other Benefits, Row Number 3, describes a benefit for “Autism Services” in Column C. We assume that this benefit includes the benefits for Autism Spectrum Disorders noted under the State Required Benefits.
4 Rows 17E and 17G should show a minimum of 30 to 35 hours of care rather than 20 hours.
4 Illinois – The proposed essential health benefits benchmark plan does not describe any specific benefits for autism. The list of state-required benefits shows that an autism benefit, which includes ABA, applies to the following markets: “individual and group and all individual/group HMO.”
New Jersey — The proposed essential health benefits benchmark plan does not describe an ABA benefit. The list of state-required benefits shows that an autism spectrum disorders benefit, which includes ABA, applies to individual, small group, and large group markets.
New Mexico – The proposed essential health benefits benchmark plan does not describe any specific benefits for autism. The list of state-required benefits shows the autism spectrum disorders benefit as applying in all markets.
The summary of essential health benefits for Colorado, Connecticut, Illinois, New Jersey, and New Mexico should be clarified or corrected.
III. The Essential Health Benefits Should Be Updated to Reflect Advances in the Treatment of Autism
The proposed rule invites comment on the process that HHS should use to update the essential health benefits over time. We urge the department to regularly consult with the autism community and to update the essential health benefits by 2016 and frequently thereafter. The department should work with the Interagency Autism Coordinating Committee (IACC), the federal advisory committee that coordinates all efforts within the department concerning autism, in developing benefit standards for autism. Each year the IACC engages in a strategic planning process that could be of great use in setting appropriate standards for coverage.
IV. HHS Should Have a Strong Enforcement Process to Ensure that Plans Adhere to the Essential Health Benefits Standards
Families often report great difficulty in accessing autism services required by law.6 Vigorous enforcement is essential for ensuring that individuals with autism have coverage of the essential health benefits.
Autism Speaks is a member of the Consortium for Citizens with Disabilities (CCD). We subscribe to the following CCD recommendations:
5 See http://www.state.nj.us/dobi/bulletins/blt10_02.pdf for a full description of the benefit. 6 See, e.g., http://www.nj.com/news/index.ssf/2012/06/nj_insurers_flout_the_law_on_a.html
CCD recommends that HHS specify that HHS will continue strong federal input and oversight of the EHB process and nondiscrimination standards, and specifically consider:
Working with the National Association of Insurance Commissioners to formalize a committee designated to review and make recommendations on national health insurance nondiscrimination standards, including EHB standards, to CCIIO and HHS;
Strengthening the Oversight office within CCIIO;
Creating or designating a department within the Office of Civil Rights to specifically
address discrimination in the reformed insurance markets; and
Formalizing a process for stakeholders to regularly provide feedback on insurance
market, EHB and non-discrimination standards and practices.
V. All Plans Should Provide Strong Preventive and Habilitative Services
HHS proposes in section 156.115(a)(3) that a plan does not provide the essential health benefits unless it provides all preventive services described in section 2713 of the Public Health Services Act, as added by section 1001 of the Affordable Care Act. For infants, children, and adolescents, these services include evidence-informed preventive care and screenings as provided in the comprehensive guidelines supported by the Health Resources and Services Administration (HRSA). The HRSA-supported guidelines appear in part in the Periodicity Schedule of the Bright Futures Recommendations for Pediatric Preventive Health Care. This schedule recommends the following developmental screening for all children:
Screening for developmental delays and disabilities during regular well-child doctor visits at
o 9 months
o 18 months
o 24 or 30 months
o Additional necessary visits
Autism-specific screening during regular well-child doctor visits at o 18 months
o 24 months
o Additional necessary visits
Autism Speaks strongly supports coverage of general developmental and autism-specific screenings as preventive health services. These services are the first step on the road to diagnosis and treatment and, for many children, substantial reduction of disability. We commend HHS for requiring coverage of these services under the definition of essential health benefits.
Proposed section 156.110(f) allows states to define habilitative services. Autism Speaks commends this approach, and urges HHS to allow this flexibility regardless of whether a state base-benchmark plan does or does not include coverage of habilitative services. These services encompass different kinds of care, including occupational therapy, physical therapy, and speech therapy; some state autism laws include ABA under the rubric of “habilitative or rehabilitative care.”
7 Experience suggests that the alternative approach described in proposed section 156.115(a)(4)(ii) of allowing issuers to define the specific benefits included in the habilitative services category would work to the detriment of people with autism: plans have historically failed to cover services that maintain function, and have often altogether excluded people with autism from coverage.
8 Plans should not be allowed to substitute rehabilitative services for habilitiative services, impose burdensome financial requirements or quantitative treatment limitations, or limit the scope, amount, and duration of habilitative services in a way that achieves a nominal parity with rehabilitative services but fails to take into account the unique needs of individuals with autism to acquire new skills.
VI. All Plans Should Provide Robust Mental Health Benefits, Including Behavioral Health Treatment
Proposed section 156.115(a)(2) requires mental health benefits, including behavioral health treatment, to be offered at parity with medical and surgical benefits. Individuals with autism often have comorbid psychiatric disorders calling for a range of interventions.
9 The provisions of the Paul Wellston and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 should benefit people with a primary autism diagnosis just as they benefit people with other brain-based conditions.
10 HHS should specify in final rules how states should evaluate their benchmark plans for meeting mental health parity requirements.
VII. Benefit Design Flexibility Should Not Be Achieved at the Expense of People with Autism. As was initially put forward in the Bulletin, HHS proposes in section 156.115(b) that a plan
7 See, e.g., Mass. Gen. Laws ch. 175 § 47AA (2012).
8 In a study of diagnostic exclusions in private behavioral health care plans, researchers examined a total of forty-six commercial, employment-based behavioral health plans covering a total of 496,911 lives. The researchers found that autism was a diagnostic exclusion in all of the plans. Pamela B. Peele, Judith R. Lave &, Kelly J. Kelleher, Exclusions and Limitations in Children’s Behavioral Health Care Coverage, 53 Psychiatr. Serv. 591 (2002).
9 Susan E. Levy, David S. Mandell & Robert T. Schultz, Autism, 374 Lancet 1627 (2009); Emily Simonoff et al., Psychiatric Disorders in Children with Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample, 49 J. Am. Acad. Child Adolesc. Psychiatry 921 (2008) (reporting that 70% of study participants had at least one comorbid psychiatric disorder and 41% had two or more).
10 As Congressman Frank Pallone, Jr., chair of the Subcommittee on Health of the House Energy and Commerce Committee, observed during the debate over the legislation, “Mental illnesses are biologically based disorders, and there is no reason we should affirmatively provide protections to a student with depression or a young adult with schizophrenia, but not a child with autism . . . .” 154 Cong. Rec. H1285 (Mar. 5, 2008).
offering the essential health benefits can substitute a benefit or set of benefits for another benefit or set of similar benefits. The proposed rule would allow substitution of benefits, or sets of benefits, that are actuarially equivalent to the benefits being replaced, but only within benefit categories
We commend HHS for prohibiting substitution between different benefit categories. We ask that HHS go further and prohibit substitution between benefits explicitly listed within an essential health benefits category, and that HHS when allowing substitution protect access to ABA and other autism services.
This access is vital to families, who often cut back or stop working in order to care for their child. Substitution in whatever form is fraught with risk for families affected by autism. Discrimination against these families should not be condoned under the guise of “flexibility,” “plan innovation,” or “benefit choice.”
If you have questions about our comments, please contact me at firstname.lastname@example.org or (202) 955-3312.
Senior Policy Advisor and Counsel
More With Autism Insurance Reform
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.