[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
COVERAGE OF AUTISM SERVICES UNDER THE AFFORDABLE CARE ACT’S ESSENTIAL HEALTH BENEFITS PACKAGE
Autism is an increasingly common but treatable condition whose impact on society makes it a national health priority. Legislative history and sound policy dictate that “behavioral health treatment” and “habilitation services and devices” be defined so as to provide applied behavior analysis and other evidence-based services for affected individuals. The typical employer plan subject to the essential health benefits requirements now covers autism services.
I. An Overview of Autism
Autism is a general term used to describe a group of complex developmental brain disorders. In 1943 Dr. Leo Kanner of the Johns Hopkins Hospital published a groundbreaking paper describing a group of children with impaired communication skills and social interactions and restricted, repetitive behaviors.i Kanner used the term “early infantile autism” to refer to the condition. About the same time that Kanner made his observations, an Austrian pediatrician named Hans Asperger published an account of children with an “autistic psychopathy.”ii The work of Kanner and Asperger helped to establish autism as a distinct condition.
In 1980 the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) for the first time placed “infantile autism” in a separate diagnostic category. The current DSM, DSM-IV-TR (fourth edition, text revision), identifies five pervasive developmental disorders: autistic disorder; pervasive developmental disorder, not otherwise specified (PDD-NOS); Asperger’s syndrome; Rett’s syndrome; and childhood disintegrative disorder. DSM-5, which is expected to be released in May 2013, subsumes autistic disorder, PDD-NOS, Asperger’s syndrome, and childhood disintegrative disorder into a single diagnostic classification, autism spectrum disorder.iii
The ninth edition of the World Health Organization’s International Classification of Diseases, Clinical Modification (ICD-9-CM), classifies pervasive developmental disorders as psychoses. ICD-10-CM, which will replace the current ICD-9-CM diagnosis and procedure codes by October 1, 2013, as the standard for the United States health care industry, categorizes pervasive developmental disorders as disorders of psychological development and lists them in the chapter for mental and behavioral disorders.
However classified, autism is defined by difficulty in reciprocal social interaction and communication and repetition and insistence on sameness. People on the autism spectrum differ. Many have language delays. Some have lifelong communication disorders: about a third of children with autism do not develop speech. Some have an intellectual disability that affects every day self-care.
Once thought to be rare, autism is now believed to affect about 1 in 110 children in the United States.iv The dramatic increase in reported prevalence — 57% in the past few years alone – cannot be fully explained. Autism occurs in all racial, ethnic, and socioeconomic groups, and is 4 to 5 times more likely to occur in boys than in girls. The Centers for Disease Control and Prevention (CDC) estimates that about 730,000 individuals age 21 and under have autism.v
Interventions for autism can be described as behavioral, medical, allied health, educational, and complementary and alternative medicine. Although autism is a young field, research evidence on the effectiveness of therapies has shown promise in some areas. A comprehensive review of treatment interventions is beyond the scope of this overview, but behavioral interventions that incorporate applied behavior analysis (ABA) treatment strategies have become widely accepted.vi Mental Health: A Report of the Surgeon General states, “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.”vii
Notwithstanding the promise of treatment, good health care is often out of the reach of affected individuals. Children with autism are more likely than other special needs children to delay or forego care entirely.viii They often suffer from comorbid conditions, such as gastrointestinal disorders, sleep disturbance, seizures, tics, language deficits, anxiety disorders, depression, and attention deficit hyperactivity disorder.ix Their families have greater out-of-pocket costs, diminished work hours and lost income, and more negative health plan experiences.x Many parents stop work altogether to care for their children. With an estimated cost to society of $35- $90 billion annually, autism is a national health priority.xi
Of the ten general categories of essential health benefits described in section 1302(b) of the Patient Protection and Affordable Care Act (ACA), two are especially important for autism: “mental health and substance use disorder services, including behavioral health treatment” (section 1302(b)(1)(E)); and “rehabilitative and habilitative services and devices” (section 1302(b)(1)(G)). Regarding the latter category, Autism Speaks has joined 20 other national organizations to form the Habilitation Benefits Coalition. Our coalition believes that rehabilitative and habilitative services and devices should be provided under private insurance to address functional deficits in patients regardless of the person’s condition or diagnosis.
Habilitation services and devices help a person attain skills or functions that have not been achieved due to congenital or developmental disability. For example, a speech-language pathologist providing speech therapy to a 3-year old with autism who has never had speech would be considered habilitation. Habilitation services and devices are critical to the health and well-being of people with autism, and Autism Speaks urges the Secretary to cover habilitation services and devices in parity with rehabilitation coverage.
In making coverage decisions under “mental health and substance abuse services, including behavioral health treatment,” the Secretary should consider congressional intent to cover behavioral health treatment for autism. On September 24, 2009, during the Senate Finance Committee’s Executive Session to Consider an Original Bill providing for Health Care Reform, Senator Robert Menendez proposed Amendment C-9 to the Chairman’s Mark of America’s Healthy Future Act. Senator Menendez made the following statement regarding his amendment:
Mr. Chairman, I’m offering a modified amendment that would clarify in the mark that behavioral health treatment is part of mental health and substance abuse services.
Behavioral health treatments help to reinforce wanted behaviors and reduce unwanted behaviors, and the treatments are critical for individuals affected by autism, Down Syndrome, and a variety of other disorders.
They can help a child to communicate and care for themselves; they can help that child from — stop him from hitting himself and those around him; they can enable a child to attend regular education classes, rather than special education classes; they can enable a child to live at home, rather than an institution.
All of these alternatives save money in the long run, and this is an effort to decrease long-term health care costs.
As modified, the amendment requires no offset, according to CBO. Very similar language has already passed in the House Energy and Commerce Committee on a bipartisan basis by voice vote.
And let me be clear: This does not expand the minimum benefits package; it merely clarifies what is already in the chairman’s mark — clarifying that insurance plans must provide behavioral health treatment as part of mental health and substance abuse services will ensure better quality health care.
And, like all Americans, people with autism and other behavioral health conditions should be able to live healthy lives. And I urge the Committee’s adoption.xii
After debate, Senator Menendez’s amendment passed by voice vote.xiii
As Senator Menendez noted, the language of his amendment was virtually identical to language passed by the House Energy and Commerce Committee. On July 31, 2009, that committee approved an amendment by Representative Mike Doyle, Co-Chair of the Coalition for Autism Research and Education, Representative Nathan Deal, and Representative Eliot Engel to H.R. 3200, America’s Affordable Health Choices Act of 2009, to amend the minimum services to be covered in the essential benefits package by striking the words “Mental health and substance use disorder services” and replacing them with “Mental health and substance use disorder services, including behavioral health treatments.”xiv The Senate and the Congress removed the “s” from “treatments” but otherwise approved the same language, which is now law.
The letters attached to this paper as Attachment A and Attachment B reaffirm congressional intent to cover autism services. In a letter to President Harvey Fineberg of the Institute of Medicine, Representative Doyle explained, “I would just reiterate that ABA has been vitally important to families with a child with autism and that these services demand parity in health care coverage. Meanwhile, it was the intent of Congress that ABA be included in the essential benefits package.” Senators Menendez, Richard J. Durbin, and Robert P. Casey, Jr. wrote, “[W]e encourage the IOM to consider behavioral health services, particularly services such as applied behavioral analysis. These services are of vital importance to people affected by autism spectrum disorders and help ensure parity in health care coverage.”
Autism screenings at 18 and 24 months are recommended preventive services under the interim final regulations on preventive health services.xv The children identified by these tests should have coverage for evidence-based services following diagnosis. Denying this coverage would undermine the benefits of the new rules as well as frustrate congressional intent.
III. Autism Services Under the Typical Employer Plan
Since 2001, 29 state legislatures (including New York, where legislation awaits approval by the governor) have passed laws requiring comprehensive autism coverage, while a thirtieth state, Minnesota, has through the settlement of a lawsuit covered autism care for those enrolled in Blue Cross Blue Shield plans. Most of the legislation is very recent:xvi
STATE AUTISM INSURANCE LAWS BY YEAR OF PASSAGE
The laws differ but have common features. All require specified health insurance plans to provide coverage for the diagnosis and treatment of autism. Almost all specify covered treatments; evidence-based treatments such as ABA, speech therapy, occupational therapy, and physical therapy are typical benefits. The Massachusetts law is attached as Attachment C to this document as a sample.
At the request of Autism Speaks, Oliver Wyman Actuarial Consulting, Inc., has reviewed the group insurance market on a state-by-state and all-states basis. Oliver Wyman found that individuals covered by state autism insurance laws now comprise 63% of the total market. The Oliver Wyman report is attached as Attachment D.
As the chart above illustrates, most states require autism coverage, and most individuals in the state-regulated group insurance market are covered by an autism insurance law. The trend is both recent and accelerating, with California on October 9th becoming the most recent state to
require comprehensive benefits. Nationwide, the typical employer plan subject to the essential health benefits requirements now covers autism services.
i Leo Kanner, Autistic Disturbances of Affective Contact, 2 Nerv. Child 217 (1943).
ii Hans Asperger, “Autistic Psychopathy” in Childhood (1944) in Autism and Asperger Syndrome 37 (Uta Frith trans. & ed., Cambridge University Press 1991).
iii Unless otherwise indicated, we use the term “autism” to refer to any of the autism spectrum disorders (ASDs).
iv Centers for Disease Control and Prevention, Prevalence of Autism Spectrum Disorders-Autism and Developmental Disabilities Monitoring Network, United States, 2006, Morbidity & Mortality Weekly Rep. 58 (SS-10) (Dec.18, 2009).
v Centers for Disease Control and Prevention, Autism Spectrum Disorders (ASDs) Data and Statistics, Hhttp://www.cdc.gov/ncbddd/autism/data.htmlH (accessed Oct. 15, 2011).
vi Behavior analysis is a scientific approach to understanding behavior and how it is affected by the environment. Applied behavior analysis (ABA) is the application of this approach to address socially important problems, and to bring about meaningful behavior change. See Donald M. Baer, Montrose M. Wolf & Todd R. Risley, Some Current Dimensions of Applied Behavior Analysis, 1 J. Applied Behavior Analysis 91 (1968). “ABA” is often used to refer both to an approach to treatment and to the treatment itself.
vii U.S. Department of Health and Human Services, “Mental Health: A Report of the Surgeon General” 163-64 (1999).
viii Michael D. Kogan et al., A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005-2006, 122 Pediatrics e1149 (2008).
ix 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).
x Susan H. Busch & Colleen L.Barry, Does Private Insurance Adequately Protect Families of Children with Mental Health Disorders?, 124 Pediatrics S399 (2009); Guillermo Montes & Jill S. Halterman, Association of Childhood Autism Spectrum Disorders and Loss of Family Income, 121 Pediatrics e821 (2008).
xi Office of Autism Research Coordination, National Institutes of Health, Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006, available at Hhttp://iacc.hhs.gov/reports/reports-to-congress/FY2006-2009/caa-full-report- 2006-2009.pdfH.
xii Senator Menendez’s statement and the debate over the amendment appear at pages 353-59 of the Executive Session transcript for 9/24/09. The transcript is available at Hhttp://finance.senate.gov/hearings/hearing/?id=d8083e61-f98b-0204-3389-428e5a1a78e7H.
xiii The amendment as adopted appears at Hhttp://finance.senate.gov/legislation/details/?id=61f4fb98- a3d0-d85c-d33f-f2c598e1d138H under the entry for 10/19/09.
xiv The amendment appears at Hhttp://energycommerce.house.gov/index.php?option=com_content&view=article&id=1722&catid=141&It emid=85H under the entry “Amendments en Bloc – Rep. Doyle.”
xv See 26 C.F.R. § 54.9815-2713T(a)(1)(iii); 29 C.F.R. § 2590.715-2713(a)(1)(iii); 45 C.F.R.
xvi Complete information on individual states can be found on the Autism Votes website at Hhttp://www.autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htmH.
The Autism Community Is Not The Autistic Community
More With Autism Votes
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.