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Autism and The Affordable Care Act (ACA)

Published: 2013-11-08 - Updated: 2021-08-29
Author: Thomas C. Weiss | Contact: Disabled World (

Synopsis: The Affordable Care Act (ACA) contains important provisions for people with autism and other conditions and their family members. People with autism and their family members will also have expanded access to affordable insurance options through the new Health Insurance Marketplace and expansion of Medicaid. Through this provision in the ACA, 3.1 million more young people have been insured. For a young adult with autism or a related condition and their family members, this means more flexibility, options, and increased peace of mind.


Main Digest

Job-based and new individual health insurance plans are no longer permitted to limit, deny, or otherwise exclude coverage to any child who is under the age of 19 based upon a pre-existing condition, to include children with autism. Beginning in the year 2014, the protections will extend to all Americans despite age.

Other Autism Information Publications (208)

The Patient Protection and Affordable Care Act (PPACA), commonly called the Affordable Care Act (ACA) or "Obamacare", is a United States federal statute signed into law by President Barack Obama on March 23, 2010. Together with the Health Care and Education Reconciliation Act, it represents the most significant regulatory overhaul of the country's healthcare system since the passage of Medicare and Medicaid in 1965. Under the law, a new "Patient's Bill of Rights" gives the American people the stability and flexibility they need to make informed choices about their health.

New health insurance plans or policies have to cover preventive services without cost-sharing, including autism screening for children at ages 18 and 24 months. Insurance companies will no longer have the ability to impose lifetime dollar limits on the coverage provided. Before the Affordable Care Act (ACA), a number of plans placed a dollar limit on what they would spend for covered benefits during the time a person was enrolled in the plan, something that would leave people with autism and their family members paying the costs of all care exceeding the dollar limit. The ACA also restricts annual dollar limits and prohibits them for new plans entirely beginning in 2014.

Young adults may remain covered under their parent's insurance up until they reach the age of 26. Through this provision in the ACA, 3.1 million more young people have been insured. For a young adult with autism or a related condition and their family members, this means more flexibility, options, and increased peace of mind.

Beginning in 2014, people with autism and their family members will also have expanded access to affordable insurance options through the new Health Insurance Marketplace and expansion of Medicaid. New plans sold in small group and individual markets, to include the Marketplace, will cover essential health benefits to assist with ensuring that health insurance is comprehensive. Health insurers will also have annual out-of-pocket limitations to protect the incomes of families against the high cost of health care services.

The rate of autism is increasing. Current estimates concerning the prevalence of autism are that it affects 1 out of every 88 children. Among boys the rate is higher at 1 out of every 54. For parents of children with autism the most effective option for treatment has been, 'Applied Behavioral Analysis (ABA).' A number of studies have demonstrated the effectiveness of ABA, both in the short and long-term. The form of therapy helps children to learn the essential life skills that assist them to succeed into adulthood. Unfortunately, many families face the problem of how to afford ABA. Daily sessions may cost from $20,000 to $100,000 per year. The therapy is not always covered by insurance.

Autism and Insurance Mandates

Some states in America have enacted autism insurance mandates to address this issue. What this means is that insurance companies selling policies in the state must offer coverage for autism and ABA. The first state to pursue such a mandate was Indiana. Prior to the year 2007, it was the only state in America to have such a mandate. Since then the number of states mandating autism insurance has grown to 32.

Despite the encouragement of the mandates families without health insurance, or families who live in states without autism insurance mandates, face how to pay for coverage. Many times it is a catch-22 of straining their finances to pay out of pocket for ABA or go without the form of therapy entirely. For families faced with such a difficult financial decision, the Affordable Care Act initially offered hope. For a while it seemed like mandatory ABA coverage would soon become the standard across the nation and be more affordable as well.

At first things seemed promising. After being signed into law it promptly did away with pre-existing conditions for children under the age of 19, something that was good news for parents living in states already mandating autism coverage. Now their children could not be denied health insurance because of a diagnosis of autism.

Parents still held hope for nation-wide coverage of autism. Their hope was based on the law's 10 essential benefits categories. The categories are medical services that each plan sold at the state health insurance marketplace under the Affordable Care Act (ACA) must cover. The federal government would also subsidize the cost of the benefits for the states. The administration even spelled out specifically in the 10 essential benefits categories that rehabilitative treatment should be included, which ABA falls under.

Sadly, autism advocates received a shock early in the year 2012 when new rules concerning essential benefits were issued by Ms. Sebelius, the head of the Health and Human Services department. The rules allowed each state to choose which medical services would be offered locally in the essential benefits categories. The rules also made autism insurance as a benefit optional. Even more, states would be financially responsible for autism insurance if they chose to include it in the essential benefits.

What Comes Next

The hard shift away from a national standard of essential benefits and an explicitly spelled out guarantee in the legislation of autism insurance certainly provoked a certain amount of ire, particularly from advocacy groups. Advocacy groups had worked tirelessly during the last ten years to get states in America to pass autism insurance mandates. The disappointment is palpable.

Essential benefits will work like this. Last year, states submitted to the government, 'benchmark plans,' which are based off of existing insurance plans in the state. The benefits included in the plans will become the standard for all health insurance plans sold at the local state insurance marketplace next year. Only 24 states will offer autism coverage next year as an essential benefit according to a study of states' benchmark plans.

The reasoning of the administration for the move to exclude coverage of autism and permit states to choose which benefits are covered is that it would allow for as little market interruption as possible in implementing the ACA. The reality is that next year there will be massive disparities between states when it comes to essential benefits offered to families. For example; some states will cover things such as infertility treatments and chiropractic care, yet no coverage for autism.

The Affordable Care Act (ACA) is, without question, a work in progress. Yet when it comes to nation-wide autism insurance coverage, the legislation equally unquestionably falls short. Families in states choosing to include autism insurance as an essential benefit will be helped by the ACA, particularly with it's tax credits for purchasing health insurance at state marketplaces. Unfortunately, other families will find themselves without such coverage. They will need to depend upon employer sponsored health plans, or make the hard decision to pay out-of-pocket for their child's therapy. It is always possible the federal government will change its mind regarding essential benefits, but it does not appear to be likely.

Author Credentials:

Thomas C. Weiss is a researcher and editor for Disabled World. Thomas attended college and university courses earning a Masters, Bachelors and two Associate degrees, as well as pursing Disability Studies. As a Nursing Assistant Thomas has assisted people from a variety of racial, religious, gender, class, and age groups by providing care for people with all forms of disabilities from Multiple Sclerosis to Parkinson's; para and quadriplegia to Spina Bifida.

Disabled World is an independent disability community established in 2004 to provide disability news and information to people with disabilities, seniors, their family and/or carers. See our homepage for informative news, reviews, sports, stories and how-tos. You can also connect with us on Twitter and Facebook or learn more about Disabled World on our about us page.


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Cite This Page (APA): Thomas C. Weiss. (2013, November 8). Autism and The Affordable Care Act (ACA). Disabled World. Retrieved May 28, 2022 from