The Affordable Care Act and

Autism
The Affordable Care Act and the Autism Community
The Affordable Care Act introduces significant reforms to the way that private health
insurance is regulated and sold. These reforms are designed to address many of the
barriers that individuals with autism spectrum disorder (ASD) face in accessing
coverage. While many of the laws effects remain to be seen, the Affordable Care Act
offers new options for individuals with ASD. This summary identifies key changes that
are important for individuals with ASD, their families, and caregivers.
BACKGROUND
Individuals with ASD can face complex health needs throughout their lifespan. ASD
affects each individual differently but is often associated with intellectual disability,
difficulties in motor coordination and attention, and physical health issues such as sleep
and gastrointestinal disturbances. Recent surveys suggest that most children living with
ASD have at least one other health condition and only 55 percent of parents reported
that their child had excellent or very good health.

Source: 2009/10 National Survey of Children with Special Health Care Needs (CSHCN)
MCHB = Maternal and Child Health Bureau

Most individuals with ASD have health insurance but face significant gaps. Coverage is
critical since families are often forced to manage medical, behavioral, and
developmental health services for a loved one. This can require navigating obscure
insurance reimbursement rules and balancing multiple physicians and providers. And
families may be paying for health insurance coverage that does not cover all of the
services that they need, resulting in costly out-of-pocket expenses. Given these
complexities, it is unsurprising that half of families with children and youth with ASD
report that their existing health insurance coverage fails to meet their needs.

Adults with ASD face similar coverage limitations, especially in transitioning off of a
parent or guardians policy. As a result, individuals with ASD may not receive the
medically necessary care that they need during their lifespan and families may face
significant financial burdens.
ASD also impacts families. Family members may have to reduce their hours or stop
working to provide care, which can result in financial difficulties. And caregivers
themselves are not immune from illness. Indeed, the impact on families of children with
ASD is greater than that experienced by families of children without ASD.
AFFORDABLE CARE ACT
The Affordable Care Act also known as health reform or Obamacare is a federal
law that was signed on March 23, 2010. The law is designed to improve the availability,
affordability, and adequacy of private health insurance. As a result, it has the potential
to address some of the coverage barriers experienced by the autism community.
What does the law mean for you? It depends. If you already have insurance through
your job, Medicare, Medicaid, TRICARE, or veterans coverage, you can keep it. Or, if
youre unhappy with your existing coverage, you can explore your new coverage
options. If youre uninsured, you will have to get health insurance but can use the new
Health Insurance Marketplace in your state to learn whether you are eligible for financial
assistance; compare the cost and quality of new options; and enroll in coverage.

Here are some of the key changes that are important for individuals with ASD, their
families, and caregivers.
Availability

You and your family cannot be turned away from coverage because of ASD, or any
other factor.
You can use the new Health Insurance Marketplace to compare different plans. You
can do so online, by mail, by phone, or in-person.

Affordability

You and your family cannot be charged higher premiums because of ASD.
Your out-of-pocket costs will be capped when you use providers in your network.
Your family may qualify for financial assistance to help pay premiums or reduce outof-pocket costs.

Adequacy

Insurance companies cannot refuse to cover preexisting conditions, such as ASD.

Plans must cover essential health benefits, including behavioral health treatment,
habilitative services, and prescription drugs. This will include applied behavior
analysis in some states.
There are new processes for appealing a decision after your insurer denies a claim,
including a review by an independent third party.

Additional Changes Relevant to Children with ASD

Your child is entitled to screening for ASD at ages 18 and 24 months. This screening
is available without cost-sharing.
You can purchase a policy solely for your child. This may be an option for parents
whose coverage does not include services they need (such as applied behavior
analysis). Families can compare their current coverage to the new options in the
Marketplace.
Plans must cover pediatric services, including oral and vision benefits.

Additional Changes Relevant to Adults with ASD

You can enroll on a parents plan until you turn age 26. This is true even if you are
not living with your parent, attending school, or not financially dependent on your
parent.
You may be newly eligible for Medicaid coverage if your state chose to expand its
Medicaid program.
Insurance companies and the Marketplaces cannot discriminate based on disability,
age, race, color, national origin, or sex, among other factors.

The Marketplace must provide information that is easy-to-understand and accessible

and make reasonable accommodations where necessary. Auxiliary aids and
services must be provided at no additional charge to help you use the Marketplace.

Not all of these provisions apply to all types of health insurance how the law affects
you will depend on your circumstances and the type of coverage you have.
WANT MORE INFORMATION?
To learn more about the new law and how it affects your coverage, Autism Speaks has
a number of resources where you can find out more. These resources include a series
of fact sheets that answer questions about the laws most significant reforms and how
they might affect you.
For questions about the new Health Insurance Marketplaces or how coverage will work
in your state, visit healthcare.gov or call the hotline (available 24/7) at 1-800-318-2596.
For additional options, such as live chat or a connection to a person in your state that
can help you understand your options, see this information.
For questions about autism-related information, resources and opportunities, contact
our Autism Response Team at familyservices@autismspeaks.org.