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Ask An Expert: Autism and the ACA

December 09, 2013

Autism Speaks recognizes that people across the country – both inside and outside the autism community – have questions about the Affordable Care Act (ACA) and what it means for them. We are committed to providing accurate information that informs families of their new options through our ACA Resources, and to working with policymakers to strengthen the law for our community.

We asked Katie Keith, the director of research at Trimpa Group and a former research professor at Georgetown University’s Center on Health Insurance Reforms, to answer some questions about health reform and the autism community.


There seems to be a lot of confusion out there about the new law. What do individuals and families really need to know about the Affordable Care Act?

There is no doubt that the law is complex, but there are four main things for families to know. First, the law makes significant changes to private health insurance (such as requiring insurance companies to cover pre-existing conditions and new health benefits). These reforms apply differently depending on the type of coverage you have and it is important to check with your insurance company or state insurance department if you have questions.

Second, every state has a new Health Insurance Marketplace where you can learn more about new options, apply for financial assistance, and choose whether to enroll in coverage now through March 31, 2014.

Third, financial assistance will be available to low- and middle-income individuals and families to help make coverage more affordable. This assistance is available for those with annual incomes as high as $45,960 for an individual or $94,200 for a family of four. And, in about half of the states, there will be expanded access to Medicaid coverage. If you’d like to see what you might qualify for, you can use this calculator to estimate your eligibility.

Fourth, most Americans (with some exceptions) must have health insurance or pay a penalty. If you already have coverage through, say, your employer, Medicare, Medicaid, Tricare, or veteran’s coverage, you won’t face a penalty and you may not notice many changes to your coverage.

Will autism benefits be covered under health reform?

It depends somewhat on what you mean by “autism benefits,” but new coverage that you buy individually or through a small employer has to cover a minimum set of “essential health benefits.” These benefits include emergency services, hospitalization, prescription drugs, behavioral health treatment, habilitative services, and pediatric services, among others. These services are critical for everyone, but especially individuals with autism. According to Autism Speaks, applied behavior analysis (ABA) is expected to be covered as an essential health benefit in 26 states and the District of Columbia.

Because this coverage is new, I would encourage families to review their options carefully by looking to see how benefits are covered, whether their providers are in the plan’s network, and whether, for example, their prescription drugs will be covered. Autism Speaks created this helpful resource with questions to keep in mind as you consider the new options.

Should families switch their coverage to the Marketplace to cover their child with autism?

Health insurance is very personal and how (and whether) you change your coverage will depend on a number of circumstances. For example, if the coverage that you now have meets your needs and is available, you may be well-served to stay in that plan. Or, if your employer subsidizes your coverage, it may not make financial sense to switch. But, if you’re unhappy with your existing coverage or uninsured, the Affordable Care Act provides an opportunity to explore new options.

Let’s say, for example, you have coverage through your employer, but it does not include ABA. This can result in financial strain as families pay for this therapy out-of-pocket. Well, if the plans offered through the Marketplace do cover ABA services (as we expect in 26 states and the District of Columbia), you could consider purchasing a family policy through the Marketplace or exploring whether a “child-only” policy (which covers just the child) is appropriate. Thus, health reform presents a new opportunity to purchase a policy for your child with autism that covers ABA without having to change the coverage for the entire family.

There are many factors to consider before making a change to your health insurance, and each family’s circumstances are unique. I would encourage families to speak to an agent or broker, a navigator, or Marketplace staff before making a final decision.

What about adults with autism?

The Affordable Care Act has a number of relevant protections for adults with autism. All young adults can enroll on their parent’s plan up to age 26. To date, more than 3 million young adults have already taken advantage of this benefit. If the person is older than 26 or the parent’s employer does not offer dependent coverage, adults with autism can explore new options through the Marketplace where they may be eligible for financial assistance or Medicaid.

As you shop, it is important to know that insurers and the Marketplaces cannot discriminate based on disability, age, race, color, national origin, or sex, among other factors. And the Marketplace must provide information that is easy-to-understand and accessible – and make reasonable accommodations where necessary.

If someone needs health insurance or wants to explore their options, how can they sign up and when should they do so?

I would encourage families to visit or use Autism Speaks’ state-by-state tool to connect with your Marketplace and learn a few key facts about health reform in your state. If you’re just curious about the options that are available – but don’t want to fill out an application just yet – plan information is available here. And, if you can’t enroll online or encounter trouble with the website, you can always call the help center at 1-800-318-2596 (available 24/7) or get free, in-person assistance in your area using this locator.

Keep in mind that timing is important. You can apply for coverage between now and March 31, 2014. If you’re signing up this year, you may want to do so by December 23 so that your benefits begin on January 1, 2014.

Are there other benefits in the Affordable Care Act for the autism community?

Yes, there are certainly other provisions that can benefit the autism community in addition to those already mentioned. For example, you are now guaranteed coverage even if you or your child has a pre-existing condition, including a diagnosis of autism spectrum disorder. And you cannot be charged higher premiums because of this diagnosis. Insurers must cover preventive services, including autism screening for children at 18 and 24 months. There are new limits on out-of-pocket costs and protections against discrimination based on race, color, national origin, sex, age, or disability, among other factors. To learn more, check out this resource on the most relevant protections for the autism community.