Reflections on a conversation with my congressman's staff

I was describing the devastating effects that blanket repeal of the ACA and block granting Medicaid would have on my family and son to my congressman's staff member today. We carry insurance on our son. Medicaid is only secondary. But it allows for us not to be bankrupted by co-pays, deductibles and uncovered expenses as we nearly were before Kyle got his waiver. Likewise, without the ACA, Kyle hits his lifetime max quickly and loses insurance, and can't find other insurance due to significant pre-existing conditions. A block grant of Medicaid cuts funding; if he loses his Medicaid waiver, he loses his nursing care after school and one of us, his parents, loses our job to care for him.

I told this staff member all this and told him most families of children of any age with disabilities depend on these programs to function, to work, and to not depend on welfare, but that most of us simply cannot afford to lose these supports and stay afloat. He said there are probably some families in that position. I said no, not some, most. I said unless you happen to have a lot of money going into your life with your child with disabilities, you cannot make it without supports. Cutting these programs threatens kids' lives and families' livelihood.

My congressman's staff member said my congressman, Todd Rokita, is primarily concerned with controlling the federal deficit and needs to see how health care can address these needs while saving money or remaining budget neutral. The thing is, all these folks with health care needs without insurance will have desperate families, showing up at ERs without insurance or the means to pay. Health care costs will rise. Premiums will rise. Programs like food stamps and WIC will see more clients, more demand.

I can make the fiscal arguments. I can remain open to better solutions. I can not care what they call it or who takes credit for it if they can figure out a truly "better way." I sincerely hope Rep. Rokita and his colleagues can be open to the additional information I'll send, and truly work for a solution that doesn't tear down but preserves and even builds up public health. If so, I'm happy to help and report their good work. What I cannot do is morally justify seeking debt reduction through cuts on health care and coverage, especially not on the backs of children, youth and adults with disabilities, on the backs of senior citizens in long-term care, or on the backs of pregnant women in poverty. Maybe it's easier because these people largely lack a voice. But that's wrong, plain and simple. And no matter the obstacles, I will not give up helping to give my son and others a voice, and to remind my elected officials of the real lives from which they often are so far removed, and the real consequences of their decisions on their most vulnerable constituents.