A Portrait of a Family with a Disabled Son – A letter to the GOP Senate

Dear Senators of the GOP,

Hello. My name is Katie Paulson. I live in Minnesota, and I am the caregiver to my son, Von, who is disabled. I want you to know that the talk of repealing the Affordable Care Act, because that is what it is actually called, is petrifying to me. When the law was passed several years ago, it opened up windows to our life that made us no longer have to live in fear. You see my son was born with several life threatening diseases. He spent many weeks in the NICU after he was born, and then at 3 months he spent 17 days in the PICU. The illness at 3 months of age nearly killed him, but thanks to the grace of God he survived. However, he has not been left unscathed from this illness. We are still dealing with the aftermath of this illness. When he got sick, his body was shutting down. He was severely hypothermic, in cardiac failure, respiratory failure, liver failure, and his blood glucose dropped so low doctors couldn’t believe he was alive. Anytime you have an illness that severe, it’s more probable than not that your body will never be the same. Today my son lives with a disease called Panhypopituitarism, which he has had since birth, and from the illness he developed damage to his brain and heart.

As I have read everything that is going on in Washington, I hear lots of talk about dollars and cents, but no where is there talk about who you are effecting by making these changes. The biggest thing that I’m not hearing is that the GOP is not willing to keep Lifetime cap exclusions, the clause that excludes denial for pre-existing conditions, and I have not heard that you will keep Medicaid in place for the folks that need it the most – the people living with serious disabilities and disease. When the Affordable Care Act passed, there was joy and happiness in my home. We finally felt safe to know our son would always have the health care he needed. It also meant that no matter how much therapy, medication or hospitalizations he had, his provider could not kick him off for reaching his lifetime maximum. We also learned that additional funding would be given by the federal government to the states to better fund the Medicaid waiver programs. For the first time in a long time, we had hope that despite his illness, we would not have to worry about his┬ásafety.

Today I am scared. I am scared that because a few men in suits, hate the Affordable care act so much that they will dismantle it before listening to the millions of us that benefit from this act. I realize that premiums went up, and I realize people are ticked off that they have to carry insurance. I can’t speak for them, but I can assure you that my family pays large premiums for both primary and supplemental insurance for my son. We have never once complained about the premiums, because we have seen first hand what our bills would be without insurance. We are grateful we have the option to even have insurance. We are grateful the State of Minnesota is invested in the lives of the disabled, and we are grateful that my son has access to Medicaid insurance and waivers.

For several years, I tried to work while caring for my son. I held a high paying job, and our family was doing really well. Then in January of this year, we were told our son needed open heart surgery. It was a punch to the stomach I could not handle. In that moment, it was as though nothing even mattered. My son had qualified for Home Care Nursing via his Medicaid, but due to the reimbursement rates for nurses, not enough nurses want to work in Home Care Nursing. The same month we were given that blow about his heart, we had 16 open shifts and no one to care for our son. I was forced to leave my job at that point. My son is too complex to attend daycare, and he is only able to go to school because he has his own nurse with him at all times. When I left my job, the state of MN let me know I could apply for a waiver for my son. My incredible Social Worker told me that I could become my son’s paid parent on the waiver. We would be able to supplement a fraction of what I left by leaving my job. However, the quality of life my son has had since has made all the difference.

My biggest fear in your plans is moving Medicaid to a block grant program. I’m sure on paper it sounds nice. You have all said you will give the power back to the state. Some people aren’t worried, but most of us in this community are shaking. We already know how underfunded our state programs are for Medicaid. Moving to a Block Grant will only further strip funding for the most vulnerable. Currently there are states where there is a longer than 10 year wait to get on a waiver. These are states that have access to the current Medicaid funding. Under the block grant, your party believes a fixed amount of money will be enough to manage the disabled. If only we lived in a perfect world, would a fixed amount of money work. Do you not realize that emergencies come up a lot, diagnosis get added, and that no person with disability is worth a FIXED amount. These are people not lines on your charts. They have feeling, needs and they need more than a passive solution of a block grant. To me a Block grant says, you don’t care enough to realize how much these people actually need. It says to me that you are ok with states putting people with disabilities on a hierarchy where only the most severe get services. That is the part that disgusts me the most. You are the party that swears up and down you are Pro-Life, but nothing about a block grant says Pro-life to me. If you care about the life of a child or an adult, you would spend the time necessary to realize what their true needs are. You would realize that most of these people can’t work because of their disabilities or because employers have become so unwilling train them or flexible enough to understand they won’t always be there. Medicaid is the one thing these people have that they don’t have to worry about – and it would be cruel for you to take it away.

I’m counting on you to hear me and listen to my words. I will not go away. I will continue to fight for my son, for all families like ours, and for all the adults that are shaking in fear because a few egomaniacs in Washington would rather be RIGHT than do the RIGHT THING.


Katie (Mamabear) Paulson






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