Now that we finally know what is in the Senate health care bill, the deep cuts to Medicaid that so many have feared are potentially days from becoming a reality. People typically think of the elderly when they think of Medicaid, but it is also critically important to another group: children and adults with significant developmental disabilities — people like my 15-year-old son.
Joshua has no idea how this will likely affect his future, but I certainly do, and I don’t mind telling you that I am scared to death.
My son is not the quirky autistic kid who is so often the focus of media stories. He is among a large group of people with severe autism who are significantly affected by their disability. He is non-verbal, has vision problems, motor planning issues, and no safety awareness. He can’t use utensils, needs full assistance for self-help tasks including bathing and dressing, and can’t be left alone for any period of time ever. The funding we receive from state and federal sources currently helps us tremendously. My son receives habilitative hours, which gives him one-to-one time with a trained professional to help him learn important life skills, which will mean he will require less care and be less of a burden on society in his adult years. We also receive respite hours as a family, which enables us to have an occasional evening out or get grocery shopping done in peace.
I don’t think those who would argue for dismantling Medicaid understand how crucial it is to families like ours and how much harder our lives would be without it. Raising a child with autism is expensive. Autism Speaks, the world’s leading autism science and advocacy organization estimates the lifetime cost of caring for an individual with autism at between $1.4 and $2.4 million. In my family, every time we turn around there is an extra expense for Josh. Routine procedures like X-rays or MRIs require sedation because my son can’t sit still. Any dental work requires sedation. When my son had his tonsils removed, it required two additional hospital stays because he refused to swallow his pain medications and became dehydrated. Being re-admitted so he could receive painkillers through his IV was the only solution that ultimately worked. Each IV insertion required extra staff assistance and my constant vigilance over two days to ensure he didn’t pull it out. As hard as that time was, I don’t know what we would have done if his insurance hadn’t covered it.
As thankful as we are for my son’s insurance through the state, it covers only the bare necessities. We have had years when we spent half our combined salary on expenses that weren’t covered.
Medicaid, in its current form, at least, allows us some peace of mind for his basic healthcare.
Medicaid funding is also a critical part of the bigger picture for my son’s future. Along with struggling to work on ways to help him gain more independence, we are also struggling with the greater question of how to plan for his future when we are no longer here. Most parents expect to care and financially provide for their children for 18 years, but when you have a child with a severe disability, you must care and provide for them for 60 or more years, or as long as you are alive, and then plan for their care long after you are gone.
Residential facilities for adults with autism are already in crisis mode and dependent on Medicaid funding. Despite the fact that the Centers for Disease Control and Prevention (CDC) estimates one in 68 children have autism, and studies show that only 3% of adults with autism will be able to live independently, appropriate programs are severely limited or non-existent for teens and adults with autism.
According to The Atlantic “right now, 80,000 autistic adults are on waiting lists for residential placements that can be up to 10 years long.”
Only two residential communities for individuals with autism exist in Arizona, for example, and both of them will likely be full before our son is an adult.
There are several new models of residential living that have popped up around the country to fill this need. Echoing Hope Ranch in Southern Arizona is one such community. Through their residential and day programs, Echoing Hope assists individuals in their day-to-day activities so that they can live as independently as possible but Medicaid funding is a critical part of the equation.
There is no question that supporting these individuals is costly. However, like it or not, these are people who will not be able to care for themselves and who will most likely far outlive their parents. As a society, the least we can do is to make sure that their needs are supported by safeguarding Medicaid funding and protecting the organizations who are working so hard to support them.
-Amy Burnham Greiner
Amy Burnham Greiner resides in Tucson, Arizona with her husband and two children. She is a Public Voices Fellow with The OpEd Project.