August 17, 2019
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The Senate bill’s deep cuts to Medicaid would be devastating for my family

George Danby | BDN
George Danby | BDN

As parents, we all want what is best for our children — to grow up into healthy, happy and successful adults. For parents of children with disabilities or serious health conditions, programs such as Medicaid can be a financial life saver. It affords our children access to the overly expensive but essential care and services they need without pushing Maine families into complete financial ruin.

The current Senate health bill would make deep cuts to Medicaid, setting a cap on the level of funds states can receive. These severe funding cuts will be devastating to more than 130,000 Maine children and families — including mine.

Our family was first introduced to MaineCare, Maine’s Medicaid program, after my son was diagnosed with autism. During that year, we realized how limited our private insurance was when it came to services our son needed. Our insurance put a combined cap on all physical therapy, occupational therapy and speech therapy, something that simply did not provide the necessary support and care he required. As our costs increased for therapeutic copayments, medical copayments, prescriptions, toilet aids, we realized we needed help lowering the financial strain of caring for a child with autism.

Fortunately, my son was eligible for MaineCare.

Many children with complex health needs are eligible for MaineCare through the Katie Beckett benefits, which provides essential services including physical and mental health care, prescription drugs, occupational therapy and more. Although the program does have a monthly premium, it is far more manageable compared with the alternative costs under a private insurance plan or worse — no coverage at all. It enables parents and families to adequately meet the needs of their children with disabilities and serious health conditions. As a result, many of these children can grow up in the comfort of their homes and thrive in their communities.

Through MaineCare my son is able to access one-on-one support with a behavioral professional to work on targeted goals including but not limited to safety and life skills out in the community. It also provides the ever-critical socialization my son and many individuals with autism need. Without MaineCare we would not have access to this program — a program we have seen to help make gains for not just our son but our entire family.

Over the course of the past five years, in addition to his autism diagnosis, our son has been diagnosed with absence seizures; gastrointestinal problems, including reflux and lack of proper enzyme for digestion; and dysgraphia, a learning disability that affects writing. With each new diagnosis comes additional financial demands — more doctor appointments, medications, travel expenses, therapeutic services, aides. The MaineCare coverage we receive makes it possible to afford our son’s care.

Our job as parents is to help our son grow and succeed in life. We do so by equipping him with the tools he needs to achieve whatever path he chooses. I like to say as parents we carry around a toolbox for him, and right now his toolbox is pretty big at age 8. MaineCare is largely the reason his toolbox is already so big and will continue to grow for years to come.

How quickly that box would empty if Medicaid funds were to be capped under the Senate health bill — something that would affect so many in our state, including my son.

Someday, when he is ready, we will hand this toolbox over to our son. And when the time comes, as parents we want to be confident the toolbox is fully stocked so he can live as successfully and independently as he can. Protecting Medicaid funding is pivotal in making this possible for my family and so many others in our state.

Maeghan Swanson is co-founder of the Aroostook Autism Support Group. She lives in Easton with her husband and two children.


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