I’ve just seen another Facebook post about the “health care” bill the Republican majority in the Senate is trying to push through.
I am angry and in tears. Parenting a child with special needs involves a lot of tears. I refuse to accept the new reality of our tears being shed because of a government who doesn’t find its citizens valuable. Gutting Medicaid is a clear message that the most vulnerable of our society, young and old are expendable.
Here is my message to the Republican senators forcing the American Health Care Act (AHCA) bill: My son, who is covered by Medicaid, is not collateral damage to your cost-saving measures. None of our children should be.
We are a family who lives every day with autism. Some days are good, some days are really rough. When I dreamed of adopting children, I didn’t think about what might happen down the road.
My husband and I adopted a spunky toddler, new to walking, but strutting everywhere with his little bowed legs. He had our heart.
Like any parents, you can’t predict what life brings to your child. For us, our reality changed when Gabe was about two and a half and was diagnosed with autism spectrum disorder. That was 10 years ago. It feels like yesterday.
Doctors don’t just look at children and declare them autistic. Because it is a spectrum disorder, certain characteristics may show themselves, while others may be masked. Parents learn to be their child’s best advocate, because parents know when something isn’t right.
When Gabe was a toddler, he was banging his head on the floor, hitting himself and screaming. He wouldn’t respond to the doctor. She told us our son was profoundly deaf and needed a psychological evaluation. We doubted Gabe was deaf, but we paid for the appointment with the specialist anyway. We were right: Gabe wasn’t deaf, but he was autistic.
Diagnosis, treatment, therapy costs add up
This is how it begins, with appointments. Appointments that rule out other conditions, determining the disorder itself and what is needed next.
During the first year of Gabe’s diagnosis, we were spending out of pocket, over $200 per month on one therapy, and $80 per month on another. He needed more, but it was all we could afford. This was with our own insurance paying a portion of the cost. This was before he was diagnosed with other conditions in addition to his autism.
When I lost my job with the church, our insurance disappeared too. My salary was more than cut in half. I was able to find part-time work, but there was no insurance coverage. My husband was working nights.
We couldn’t afford the occupational therapy that Gabe needed, or psychologist appointments. He was just starting to take medications to treat his conditions and that expense would be huge. We used Gabe’s Medicaid coverage. When he had a bad reaction to a medication and ended up in ICU for four days, we were covered.
Having that coverage has literally saved Gabe’s life. His doctors have been able to try different medications to find what works. He has been able to take those medications consistently to keep the right levels. The skills Gabe has learned to deal with anxiety and change have all been due to therapists. As our job situations and lives have changed over the years, we have not had to worry about Gabe getting consistent care because of financial hardship.
Gabe is just one example of one autistic person. Everyone is different. He has fewer appointments than many other kids I know. He has more issues than some other kids. If Medicaid has done this much for our family, for our son, think of those families who need so much more help.
Search for specialists tiring
Many doctors in our area don’t take Medicaid for kids (called TennCare here in Tennessee) so families must not only find a doctor who does take TennCare, but also find one who understands autism spectrum disorder, as well as other conditions which are often diagnosed alongside autism.
Our specialists, our doctors, our dentists all must have some sort of experience with autism. It’s a necessity.
School districts have access to occupational and speech therapy services, but the reason these programs exist in the schools is because of the extra funding given through Medicaid.
Without it, there would not be enough to pay the specialists, and children with disabilities would not have the necessary helps to function and succeed in school. Even school buses transporting special needs students would be affected. Medicaid helps keep the services from early intervention to graduation in schools throughout the country.
As I write this, my son is rocking back and forth. He is doing his routine to keep himself regulated. I shudder to think what would happen if we couldn’t access the physicians, therapies and medications he needs to function.
I can’t help but feel angry. The three of us have worked so hard to get to this point — and the idea that a bill created for health care would instead take all that success away is heartbreaking.
The reality is this: Changes in Medicaid through the American Health Care Act would devastate our special needs programs in schools. The loss of Medicaid coverage would make consistent care for children impossible for parents.
Children will suffer. Families will suffer. There is nothing healthy about it.
Marise A. Tuttle is an ordained American Baptist clergy, currently living out her faith as a sensible human being and fierce advocate for the autism community.
Married for 20 years to Super Dad, John, and mom to Super Kid, Gabe, Tuttle also works as a Key Manager for Chili’s and is founder of In Site Outreach, focusing on making restaurants and other businesses more “autism-friendly” in their locations and services.
She and her family live in Cordova, Tennessee.
Where do we go from here?
Read more about the American Health Care Act, which would replace the Affordable Care Act, also known as Obamacare. A recent poll shows most Americans don’t realize the AHCA would cut Medicaid spending.
Speak up. Let your elected officials know what you think about cuts to Medicaid. Find contact information for your senators here. If you’re in Tennessee, reach Sen. Lamar Alexander at (202) 224–4944 or by email. Reach Sen. Bob Corker (202) 224–3344 or by email.
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