Updated insurance needs for families living with autism

By Lisa Ackerman

The Affordable Care Act (ACA) is in the news (1.) Many will be affected by the changes to ACA including families living with autism.

For many families like mine, insurance is our least favorite topic. There are many hats families wear to help their child and one of the most time consuming aspects of their day to day lives is navigating insurance. This blog will attempt to state some generalizations of what families living with autism need and experience from ACA. If you have opinions please share them in the comments

For many TACA families, ACA made autism therapy services such as applied behavioral analysis, speech and occupational therapies available for the first time. But over time, ACA has been harder for families to afford.

While our legislators busily work to replace or rework ACA, we would very much like these points to be considered to make the solution more feasible for families living with autism:

  • Affordable premiums.
    I know this statement alone means many things to many people. Many families are experiencing exploding costs to their insurance. For insurance to be helpful first you need to be able to afford to buy it.
  • Co-pays that scale based on income.
  • Create monthly co-pays available for services versus by service incidence.
    It is important to note families cannot pay for each occurrence. Some children see 1-4 therapists or have multiple therapy sessions a day. With each therapy session there is a co-pay for services which varies by insurance plan and service provider.
  • Remove life time maximum insurances limits.
    Some families can max out their health insurance life time limits while their child is still in elementary school. We need to be aware some in our community need large life time maximums.
  • Autism and other conditions cannot be listed as a pre-existing condition.
    These issues don’t go away when we have a new insurance offering. Families need to share their stories so representatives understand their daily needs and concerns (3.)

For parents, TACA has numerous resources on our website and meetings held on navigating insurance. You can find them at the TACA website (2.)

Families need to share their stories so representatives understand their daily needs and concerns (3.)   If you agree, share this blog and your family story with your representatives. We need the next insurance offering (whether it is a new plan or revised) to address these needs.


  1. http://www.affordable-health-insurance-plans.org
  2. TACA Insurance resources: http://www.tacanow.org/family-resources/how-to-start-working-with-your-insurance-company/ http://www.tacanow.org/family-resources/health-insurance-coverage-on-a-budget/ http://www.tacanow.org/family-resources/autism-insurance-resources/ http://www.tacanow.org/family-resources/insurance-definitions/ http://www.tacanow.org/family-resources/appealing-insurance-claim-denials/ http://www.tacanow.org/family-resources/insurance-pays-for-what/
  3. How to contact your legislators: https://www.senate.gov/senators/contact/ http://www.house.gov/representatives/find/

4 thoughts on “Updated insurance needs for families living with autism

Add yours

  1. Many families rely on Medicaid as supplemental insurance that helps with the cost gap left from private insurance. Children qualify automatically based on state certified disability or a waiver from the local center, even if they would not usually income qualify. Medicaid cuts will also lead to fewer early intervention services, as discussed here when it happened in a state context: https://www.census.gov/content/dam/Census/library/publications/2016/demo/p60-256.pdf

  2. Our family story is that we have one child, and amazing private insurance coverage through my husband’s employer. Our copays are only $15 but our share for ABA was 90/10 % so our initial bills were still very high before we got the supplemental Medi-Cal coverage to offset it. We are fortunate to live in California, where I believe our state politicians will help protect this supplement for disabled children, but I really worry for other families in other states and situations. Our kids need these services, as soon as possible. Medicaid also helps fund special education preschools.

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