To Senator Rob Portman, From a Family That Relies on Medicaid

Sometimes you just can’t sit around, complain and do nothing. So when a fellow mom of a child with a disability enlisted our help to share our story and what Medicaid cuts and caps will (are) doing to our family, I answered the call. My husband Paul and I headed to a meeting to discuss this important topic with some of the aides at Senator Rob Portman’s office. We hope that sharing our journey will relay the importance of the support families like ours receive through Medicaid. We are not freeloaders or lazy, yet we rely on the aid of public funding to keep our family together. I am not ashamed of it, either, because our family deserves proper care and the ability to enjoy life like other families.

This is the letter I will leave behind…

Dear Senator Portman,

My name is Andrea Rozzi-Gautraud and I am mother to four children (ages 11, 10, 7 and almost 6).  Our youngest child, Paul, sustained a severe brain injury around the time of birth due to an interruption of blood flow to his brain occurring from an unknown problem with his placenta. Paul defied the odds when the doctors told us that his condition was not compatible with life, and he continues his fight to this day. He has many conditions due to his brain injury. Paul has severe cerebral palsy, is non-verbal, visually impaired, has a sensory processing disorder, problems with sleeping, requires a feeding tube, has a seizure disorder and many other diagnoses. He depends on others for every single bit of his care. He also struggles with irritability and anxiety when going to unfamiliar places, which makes going out both physically and mentally stressful.

My husband’s job as a pilot leaves my alone with all four children 18 days and nights per month. Paul receives Private Duty Nursing through our private insurance and when that runs out, Medicaid was picking up the remaining. This allows me to work a part-time job to help make ends meet and my other three children to participate in some “typical activities” while knowing my son has proper care. However, Medicaid has recently notified us that they no longer will cover his nursing care, even though Warren County and all his doctors and specialists have recommended they continue the care.

The state’s denial of Paul’s doctors and Warren County’s request to continue Paul’s private duty nursing has created an immense amount of stress on our family.  It feels like I am drowning and the State of Ohio just handed me a cinderblock.  This devastating situation leaves our family utterly terrified of where Medicaid cuts will leave us in the future.

I fear that not providing support to hard-working, struggling families will force loving and devoted parents to put their children in nursing homes or give up custody. As these children grow, I am learning firsthand that life often becomes more complicated and additional help is required, not cuts and caps. Outcomes of people who can age in place with disabilities with proper medical supports are significantly greater than reverting to an institutional system.  Medicaid waivers also need more funding as waitlists tend to be significantly long.

I always say that the easy part is loving and accepting Paul as he is.  He is the light of our lives. What makes this life so incredibly difficult is the fight for the things he requires. Cuts mean you are penalizing people who cannot care for themselves and whose families are already working their hardest to provide everything they can for their family member with a disability.

I hope you remember our story and daily struggle when it comes time to put a healthcare bill together that will be good for all Americans. Paul and his family are counting on you.

Best Regards,

Andrea Rozzi-Gautraud

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