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Health Care for the Autistic Child in the US UIC Law Review Volume 46 Issue 1 Article 4 2012 Health Care for the Autistic Child in the U.S.: The Case for Federal Legislative Reform for ABA Therapy, 46 J. Marshall L. Rev. 169 (2012) Laura Hoffman Follow this and additional works at: https://repository.law.uic.edu/lawreview Part of the Disability Law Commons, Health Law and Policy Commons, Insurance Law Commons, Juvenile Law Commons, Legislation Commons, and the Medical Jurisprudence Commons Recommended Citation Laura Hoffman, Health Care for the Autistic Child in the U.S.: The Case for Federal Legislative Reform for ABA Therapy, 46 J. Marshall L. Rev. 169 (2012) https://repository.law.uic.edu/lawreview/vol46/iss1/4 This Article is brought to you for free and open access by UIC Law Open Access Repository. It has been accepted for inclusion in UIC Law Review by an authorized administrator of UIC Law Open Access Repository. For more information, please contact [email protected]. Do Not Delete 2/9/2013 6:06 PM HEALTH CARE FOR THE AUTISTIC CHILD IN THE U.S.: THE CASE FOR FEDERAL LEGISLATIVE REFORM FOR ABA THERAPY LAURA C. HOFFMAN* Autism is transforming the way we think about disability; it is affecting the balance between medical insurance coverage and educational services; it is creating new markets that beg for regulatory intervention; it is challenging traditional assumptions about retribution and punishment; it is prompting a massive investment of public and private resources; it is changing the aesthetics of suffering, and in so doing, it is rearranging legislative priorities.1 I. INTRODUCTION Autism is the fastest growing developmental disability today with a growth rate of 1,148%.2 According to the Centers for Disease Control and Prevention (CDC), approximately 1 in 88 children in the U.S. have an autism spectrum disorder (ASD).3 The * Dr. Laura C. Hoffman earned her SJD from Loyola University Chicago School of Law's Beazley Institute of Health Law and Policy in 2012. She earned a LLM in Child and Family Law from Loyola University Chicago School of Law in 2010. She holds a second LLM in Government and Law with a concentration in Civil and Constitutional Rights from American University Washington College of Law, 2009. She became licensed to practice law in the State of Ohio in 2008. Laura earned her JD from Ave Maria School of Law in 2007. She holds a BA in Political Science, cum laude, from the University of Notre Dame, 2004. She would like to thank her professional mentors, Professor Diane Geraghty, Professor John Blum, and Professor Michael Zimmer for their support and encouragement of her professional career. Finally, she leaves a special thank you to her parents, Ronald and Janet Hoffman, and Robert L. Choromanski, Esq. for their gifts of unconditional love. She may be reached at [email protected]. Portions of this Article appear in Laura C. Hoffman, The Difficulty of Ensuring Access to Health Care for the Autistic Child: More Is Needed than Federal Health Care Reform, 41 SW. L. REV. 435 (2012). 1. Daniela Caruso, Autism in the U.S.: Social Movement and Legal Change, 36 AM. J.L. & MED. 483, 486 (2010). 2. Facts and Statistics, AUTISM SOC’Y, http://www.autism- society.org/about-autism/facts-and-statistics.html (last visited Oct. 22, 2012). 3. Ctrs. for Disease Control & Prevention, Autism Spectrum Disorders (ASDs): Data & Statistics, CDC.GOV, http://www.cdc.gov/ncbddd/autism/data.html (last updated Mar. 29, 2012); see 169 Do Not Delete 2/9/2013 6:06 PM 170 The John Marshall Law Review [46:169 prevalence is even greater by gender with a ratio of 5 to 1, with 1 in 54 boys having some form of an ASD compared to only 1 in 252 girls.4 As the number of individuals with autism continues to climb, large questions arise as to how these individuals’ needs should be addressed, specifically with regard to children with autism and their well-being to ensure their presence and involvement in our society. Should society play a role in helping care for and protect children with autism? If so, what implications does this have in terms of legal protections? What responsibility does our legal system carry to ensuring that children with autism are provided the means to their future development toward adulthood? In particular, as more children with autism have been diagnosed, more challenges have been created for these children in acquiring access to health care services that meet their needs. In his presidential proclamation recognizing World Autism Awareness Day on April 2, 2012, President Barack Obama wrote: “As a Nation, we share a responsibility to ensure persons living with ASDs have the opportunity to pursue their full measure of happiness and achieve their greatest potential.”5 In particular, as more children with autism have been diagnosed, it has become more challenging for parents of children with autism to acquire access to health care services that meet their children’s needs as they are among the many children with special health needs in America.6 As more research has grown suggesting that the diagnosis of autism and treatment as early as possible will benefit the individual much more significantly in the long run, it is critical that health care policies are designed to ensure that autistic children are provided access to these services in the very vital period of childhood development.7 also Ctrs. for Disease Control & Prevention, Morbidity and Mortality Weekly Report (MMWR): Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008: Surveillance Summaries, CDC.GOV (Mar. 30, 2012), http://www.cdc.gov/ mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_w. 4. Id. 5. Proclamation No. 8795, 77 Fed. Reg. 20,501 (Apr. 2, 2012), available at http://www.whitehouse.gov/the-press-office/2012/04/02/presidential- proclamation-world-autism-awareness-day-2012. 6. See Campaign for Child Health Care, Children and Youth with Special Health Care Needs 1 (Apr. 2007), http://www.childrenshealthcampaign.org/assets/pdf/Children-with-Special- Needs.pdf (reporting that twenty percent of families have had financial difficulty in paying for healthcare for children with special needs). 7. See Ctrs. for Disease Control & Prevention, Autism Spectrum Disorders (ASDs): Treatment, CDC.GOV, http://www.cdc.gov/ncbddd/autism/treatment.html (last updated Dec. 29, 2010) (detailing the different kinds of treatments that can benefit children with ASDs early in their development). Do Not Delete 2/9/2013 6:06 PM 2012] Health Care for the Autistic Child in the U.S. 171 This Article evaluates how the law has been used to provide access to health care for children with autism and what this means for the future of shaping policies designed to afford autistic children adequate legal protections for health care services. In Part II, this Article provides an introduction and basic understanding of autism including its history, how autism is defined, its prevalence especially regarding children, issues involving diagnosis, how genetics may play a role in autism, and treatment options with particular attention to ABA therapy. Part III provides an overview of the cost of providing health care for individuals with autism and why this case is unique for autistic children even compared to children with other chronic diseases. Part IV details the history of autism and access to health care insurance coverage through litigation. The litigation section examines several cases from the U.S. involving denials of insurance coverage for children with autism for various treatments as well as an international case from the Supreme Court of Canada that provides an intriguing look at alternative legal challenges. An overview of the Vaccine Court is then provided and a summary of the most recent litigation efforts to try to secure access to health care services for autistic children. Part V explores the legislative landscape for legal protections available for securing access to health care for individuals with autism. That section is divided into three types of legislation: (1) federal law, (2) joint efforts—those that involve the cooperation of both federal and state governments, and (3) state legislative efforts. Part VI analyzes bills recently proposed at the federal level to provide greater legal protections for those with autism to ensure legal protections for access to health care and their potential as solutions to the difficulties posed in acquiring health care for individuals with autism. Finally, in Part VII, this Article argues that the federal government needs to coordinate its efforts in research and policy regarding treatments for autism that will result in greater universal care that addresses the particularized needs of autistic children and their differences across the spectrum for health care services. II. UNDERSTANDING AUTISM A. History of Autism The history of autism and the evolution of this developmental disability is an important foundation for comprehending the nature of its complexities and how defining a disorder can be crucial to the development of policy. The initial discoveries of “autism” and “Asperger’s Syndrome” at approximately the same time may have inspired the later categorization of what is now known as the “autism spectrum” that has become a source of Do Not Delete 2/9/2013 6:06 PM 172 The John Marshall Law Review [46:169 tension, and often, confusion, in policy making surrounding autism generally. “From the early 1900s, autism has referred to a range of psychological conditions.”8 The origin of the word autism provides insight as to an understanding of the disability: “The word ‘autism,’ which has been in use for about 100 years, comes from the Greek word ‘autos,’ meaning ‘self.’ The term describes conditions in which a person is removed from social interaction— hence, an isolated self.”9 The first recognized use of the term “autism” occurred in 1911 by a Swiss psychiatrist, Eugen Bleuler, in reference to “symptoms of schizophrenia.”10 Eventually the term “autism” was used to refer to children in the U.S.: “In the 1940s, researchers in the United States began to use the term ‘autism’ to describe children with emotional or social problems.
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