A coalition of health care and advocacy groups launched the Save My Care Bus Tour, a two-month, cross-country tour to stand against Congressional Republicans’ rushed plan to take health care away from 30 million Americans. The bus tour arrived at the West Virginia State Capitol on August 24 to rally citizens and prepare us to fight back the next attempt to repeal the Affordable Care Act.
As a parent of a child with Autism Spectrum Disorder (ASD), I know what is at stake if the ACA is repealed. I accepted the invitation to speak at the event on behalf of my 4-year-old son Riley. My hope is that Riley will soon be able to stand up and speak for himself. I know when that day comes, it will because of the Affordable Care Act.
Riley was diagnosed with ASD shortly before his second birthday. He was completely non-verbal, barely eating, barely sleeping, and we had no real way of communicating with him. We enrolled in Birth to Three and then started receiving intensive Applied Behavioral Analysis (ABA) therapy from Bright Futures Learning Services.
We have insurance through my employer, but that does not cover the total cost of ABA therapy. Because of the ACA, behavioral health is covered as an essential benefit. Because of the ACA’s protection for pre-existing conditions, we were able to enter the marketplace to purchase supplemental insurance, which we could otherwise not afford.
Riley is incredibly lucky to receive these early interventions through Bright Futures.
The majority of children on the Autism Spectrum in West Virginia do not receive early intervention. Because of a policy issue, Medicaid does not cover ABA therapy. Although behavioral therapy for children with ASD is expensive, the costs of not receiving it are much more than you can imagine. You cannot quantify changing a child’s life trajectory and ability to function in this world. Trust me, you cannot put a price on a child’s ability to communicate.
People talk about healthcare as an expense, but Riley’s healthcare is an investment. In two years, he has made amazing progress and his life trajectory has been completely changed through early ABA intervention. He’s talking, he’s playing with toys, he’s saying “I love you Mama” with the sweetest voice I’ve ever heard. They believe continuing to receive ABA therapy will allow him to be mainstreamed into kindergarten and that with the right supports, Riley’s future potential is limitless.
That’s the good news.
The bad news is that President Trump and the Republicans in Congress still want to repeal the ACA and take away our access to healthcare. They are actively trying to deny children like Riley the ability to receive medically necessary interventions and treatments. They are working against the health and wellbeing of our families. 217 Republicans in the House and 49 Republicans in the Senate voted to cut our care— they voted against children like Riley. We must hold them accountable for their votes.
Americans stood up and together we fought and won that first battle. Unfortunately, this is a war. It’s a war on the health of our children, our Seniors, our loved ones. We have to and we will push back. I can tell you from knowing lots of families with special healthcare needs, we don’t give up. We face daily challenges, we struggle, and we take no victory for granted. But we cannot do it alone.
We need your help to join in this fight. Text OURLIVES — one word — to 52886. That’s OURLIVES — no space — to 52886. You will receive information on how you can help fight back the attempt to sabotage our healthcare. Please use your voice to fight for our loved ones against these cruel and careless attempts to take healthcare coverage away from Riley and millions of other Americans.