Effects of the Affordable Care Act on the Autism Community

By: Erin Hilliard

Autism Spectrum Disorders: The Current Situation

New rules, new regulations – many argue that health care is being turned upside down and inside out by the complex and often misunderstood Affordable Care Act. The effects of the Affordable Care Act (ACA) have been far-reaching, and many in the disabled community are asking what the Affordable Care Act means for children with special needs. This is an important question for individuals and families affected by Autism Spectrum Disorders, the fastest growing developmental disabilities in the United States. The Center for Disease Control estimated that in the year 2000, one in every 150 children had an Autism Spectrum Disorder (ASD). By 2006 the prevalence had increased to one in every 110 children, and the most recent estimate from 2008 reports nearly one in every 88 children is diagnosed with an ASD.[1] This means that between 2002 and 2008, the prevalence of Autism Spectrum Disorders increased by 78%.[2] The United States is not the only country facing this challenge. South Korea reports an even higher prevalence rate of 2.6% suggesting that autism is under-diagnosed and under-reported worldwide.[3] Competing theories exist as to why ASD prevalence has risen drastically in recent years. Yet, there is no question that ASDs are a growing concern for families, communities and countries around the world.

What is Autism?

Autism Spectrum Disorders are a combination of social, emotional and communication difficulties that scientists have linked to abnormal brain chemistry and biology. Beginning at a very young age, children will withdraw into their own world. Typical behaviors for effected children include avoiding eye contact, not wanting to be touched, not showing an interest in moving objects and not noticing when someone points at something or tries to speak with them. Children with ASDs often exhibit repetitive behavior, struggle with changes in their routine and have strong reactions towards certain sights, smells, tastes and other sensory stimuli.[4] The learning abilities of ASD individuals range from severely challenged, or low-functioning, to extremely gifted, also referred to as high-functioning, in certain subject areas. Symptoms continue to evolve as the child grows and matures. For example, those who receive therapy in the early years of their life may gain speech capabilities they did not have initially. On the other hand, some autistic children who are prone to violent or aggressive behavior can learn to use their size and actions as tools of manipulation as they get older, making treatment and behavioral intervention more complex.

Direct and Indirect Costs of Autism

Having a child with autism is economically challenging for many families. Without standard social services in place to provide financial support to autistic individuals, families must personally shoulder the costs associated with appropriate therapies and services for their children. The Autism Society estimates it costs a family $3-$5 million to raise an autistic child over the course of their entire lifetime. Other estimates suggest the United States faces $90 billion annually in autism related costs, including insurance coverage, education spending, housing, and transportation.[5] A study in Britain estimated similar lifetime costs for autistic children based on prevalence rates, service use, loss of productivity, and family expenses.[6] They estimated the average lifetime cost for an individual with low-functioning ASD was $4.7 million and the lifetime cost for someone with high-functioning autism at $4.6 million.[7] A study by the Center for Disease Control found that in 2005, the average annual medical costs for Medicaid-enrolled autistic children totaled $10,079 per child, six times higher than children without an ASD.[8]

Therapy combined with other necessary nonmedical expenses can add up quickly. One year of intense ASD behavioral interventions costs $40,000 to $60,000 per child.[9] A study from the Harvard School of Public Health estimated that direct medical and nonmedical costs can add up to as much as $72,000 for a child on the high end of the spectrum; $67,000 annually for a child with a less extreme case of the disorder.[10] Those figures include costs incurred for child care, therapy, doctor visits, prescriptions and other related expenses. A study in 2007 found that the lack of reimbursement for parents’ out-of-pocket expenses results in serious financial problems for many families, especially low-income households.[11]

What does the Affordable Care Act Change?

Families have sought reprieve from the high costs of autism care through state funded insurance mandates. Prior to the passage of the Affordable Care Act, thirty-seven states required some form of autism related insurance coverage.[12] In some states, the enrolled could choose to pay for additional autism coverage, while in others, it was required by law for providers to include it in their coverage packages. Many state mandates targeted services to children and the majority of states capped benefits at $36,000 a year, just over half the estimated cost for a year of Applied Behavior Analysis (the most common form of early childhood autism therapy), not including other medical and personal costs.[13]

With the enactment of the Affordable Care Act, the coverage landscape is changing for the better. The elimination of the “pre-existing conditions” clause will have many families sleeping easier at night. Since autism can be diagnosed as early as 6 months old, many children used to be denied coverage; those who did manage to obtain coverage were charged much higher rates based on the risk factor of their disability. The ACA now makes it illegal to discriminate against and charge individuals with disabilities more than anyone else.[14]

Further, many families will also be happy to know that the Affordable Care Act increases benefit maximums, in many situations eliminating them all together. As a result of the Federal Mental Health Parity Act that took effect in October of 2009, carriers are not allowed to have dollar maximums or benefit limits for Autism treatment unless they apply to all other medical conditions.[15] Lifetime coverage caps have been removed as well, allowing children to remain on their parents’ health insurance until age 26 without the enforcement of predetermined dollar maximums. In addition, the ACA expands coverage to twenty-six different preventative services, including screening tests for early identification of autism.[16] Government subsidies for low-income and unemployed families will also be beneficial, allowing those who may have autistic children but currently have no health insurance to seek coverage and access to crucial early care.

The autism community is hopeful that the Patient Protection and Affordable Care Act, signed into law in March, 2010 will not only allow more individuals to receive proper care, but also decrease the disparity between the quality of coverage offered in different states. States that have yet to pass any form of autism insurance mandate, however, may lag behind as they struggle to comply with the new Affordable Care Act regulations. Advocacy groups such as Autism Speaks applaud the Federal Health Mental Parity Law, but because autism is a not psychological disorder, the insurance industry has denied autism coverage in states where mental health parity laws exist.[17] In lieu of these coverage changes, it is clear that autism insurance laws will remain a hot topic of discussion in the coming months, one that parents and supporters aren’t going to let Congress bypass until discrimination in the health insurance marketplace for autistic individuals has been put to an end.


  1. Data & Statistics, Center for Disease Control and Prevention (visited Nov. 15, 2013), online at http://www.cdc.gov/ncbddd/autism/data.html.  ↩

  2. Autism and Developmental Disabilities Monitoring (ADDM) Network, Center for Disease Control and Prevention (visited Nov. 15, 2013), online at http://www.cdc.gov/ncbddd/autism/addm.html.  ↩

  3. New Study Reveals Autism Prevalence in South Korea Estimated to be 2.6% or 1 in 38 Children, Autism Speaks (2011), online at http://autismspeaks.org/pre ss/south_korea-autism_prevelance_study.php.  ↩

  4. Autism Spectrum Disorders Fact Sheet, Center for Disease Control and Prevention, online at http://www.cdc.gov/actearly.  ↩

  5. The Budget Crisis, Autism Society, online at http://ww w.autism-society.org/get-involved/the-budget-crisis.html.  ↩

  6. Krister Järbrink & Martin Knapp, The Economic Impact of Autism in Britain, 5 Autism 7 (2001).  ↩

  7. Deanne Sharpe & Dana Baker, The Financial Side of Autism: Private and Public Costs (2011), online at http://www.intechopen.com/books/a-comprehensive-book-on -autism-spectrum-disorders/the-financial-side-of-autism-private-and-public-costs.  ↩

  8. Key Findings: Autism Spectrum Disorder and Health Care Expenditures, Center for Disease Control and Prevention (visited Nov. 15, 2013), online at http://www.ece.gov/ncbddd/features/autism-keyfindings2012.htm.  ↩

  9. Data & Statistics, Center for Disease Control and Prevention (cited in note 1).  ↩

  10. Michael Ganz, The Lifetime Distribution of the Incremental Societal Costs of Autism, 161 Archives of Ped. & Adolesc. Med. 343 (2007).  ↩

  11. Deanne Sharpe & Dana Baker, Financial Issues Associated with Having a Child with Autism, 28 J. Fam. & Econ. Issues 247 (2007).  ↩

  12. Insurance Coverage for Autism, National Conference of State Legislatures (visited Dec. 12, 2013), online at http://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx.  ↩

  13. Sharpe & Baker, Financial Side of Autism (cited in note 7).  ↩

  14. Autism and Affordable Care, Special Needs Network, online at http://www.specialneedsnetwork.org/resources/medical-and-intervention-services/autism-and-affordable-care/.  ↩

  15. Insurance Funding for Autism: What Insurance Companies Will and Won’t Cover and Effective Strategies to Maximize Benefits, Center for Autism and Related Disorders (hard-copy of PowerPoint report on file with author).  ↩

  16. Autism and Affordable Care, Special Needs Network (cited in note 14).  ↩

  17. Parents Press States for Autism Insurance Laws, Autism Speaks (Oct. 20, 2008), online at http://www.autismspeaks.org/news/news-item/parents-press-states-autism-insurance-laws.  ↩