To President Donald Trump From the Mother of a Child on the Autism Spectrum
Dear President Donald Trump,
As I write this, you have yet to release your new health care proposal, which would in effect replace the Affordable Care Act (ACA), something you’ve promised to get rid of since you began your campaign for presidency.
As I write this, I’m also watching my almost 4-year-old autistic daughter play a board game with her behavioral therapist and wondering how your new health care laws will affect her future.
On the outside, she may look like any typical 4-year-old little girl: She’s taking turns, following the rules, and asking her therapist for a high-five after every turn. But what you don’t see is that it took two years of speech therapy and a year each of occupational therapy, applied behavioral analysis (ABA) therapy and special education preschool to get her here. A year ago, my daughter would have had difficulty playing the game because she struggled with asking questions and following directions. And the year before that, my daughter only had 15 words.
We have fought every inch of every mile along the way so far to make sure she received all the proper referrals for every evaluation and therapy, because I knew the importance of early intervention therapy in the likelihood of her successful long-term development. We have been fortunate to have both a wonderful team of physicians and equally exceptional insurance along the way that have been an integral part of providing my daughter with the therapies she needs.
But our journey is just beginning, and there is a high likelihood she will need continued services for quite some time. There is no guarantee at this juncture that she will ever be free of the need for special needs services.
Like so many parents of children with developmental disabilities, we are reliant on insurance to be able to access these services. I know you’ve promised “insurance for everybody” and “to not have people dying on the street,” but for parents of children with special needs, it’s more complicated than that. One in 45 children in this country are diagnosed with autism spectrum disorder, like my daughter, and require special therapies and early or continued interventions to help them develop the skills to become independent adults. Because of the sheer cost of these therapies, they can become completely inaccessible without insurance coverage. The Affordable Care Act ensured those with autism would receive access to these habilitative services. Prior to the ACA, insurance companies would often determine these services weren’t medically necessary for those with developmental disabilities because they weren’t rehabilitative in nature.
What concerns me is that in your haste to replace what you view as a broken system even in its infancy, you may not realize that many of its provisions were working to help families like ours — families that depend on access to these services as part of our children’s well-being. I sincerely hope any new health care propositions meant to replace Obamacare will have similar provisions that will protect not only the future of my daughter, but the future of the millions of other children with developmental disorders in this country. Please don’t forget about them in your legislation. They may not necessarily be left “dying in the street,” but they would certainly be left behind.
Mother and Advocate
Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.
Image via Thinkstock.
Follow this journey on Misfits and Misadventures.
We want to hear your story. Become a Mighty contributor here.