I was paralyzed by a mosquito bite. The GOP health care plan would be devastating for me.
In August 2012, after a week of feeling very tired, I went to my doctor, who quickly sent me to the hospital for tests. Within 24 hours of checking in, other than my brain and heart, all of my body functions stopped. Doctors told me I had “acute flaccid paralysis” due to the West Nile virus — contracted from a mosquito bite in Colorado.
I spent five and a half months in multiple hospitals. They saved my life — but not my ability to move. I am paralyzed, and will be for the rest of my life. Advisers in the hospitals told me about Medicaid. They explained it wasn’t just health care, but also services to help me go back to my home to live.
With no use of my legs and limited ability to move my arms and hands, I could no longer dress, cook or clean. Heck, I couldn’t get out of bed without help. However, Medicaid’s Home & Community-Based Services program would supplement the cost of aides coming to my home to help me with these basic — but critical — services.
At first I refused. I was determined not to be one of “those” people living off the system. After all, I had worked my way through the corporate world, purchased and run my own franchise business, paid for my own insurance, and was committed to keeping that going — or at least to working and earning my living. But there was a problem: I had great private insurance with an unlimited financial cap on health care, but it didn’t cover the services or supports I would need so that I could live at home.
So I relented. I applied for and was approved to participate in the HCBS program.
The program has proved to be of enormous value — not only to me, but all of society. By having in-home assistance, I did not have to go into a nursing home. I could continue to live in my own space and I could spare my longtime girlfriend from having to quit her job to take care of me. But society benefits as well. Even the many hours of assistance I need cost significantly less than nursing-home care. And, by getting these supports, I can continue to use my skills — working two part-time jobs and serving on a collaboration to advise Colorado’s Department of Health Care, Policy & Financing.
I am a Republican. I voted for and continue to support the Republican Party — a party that promised I would not lose my Medicaid coverage. There is plenty to improve in our current health care system. Senate Republicans’ health care proposal, however, is not better for me, it is not better for other people with disabilities, and it is not better for our state.
Transferring Medicaid to the states based on a simple per-capita allocation won’t meet the needs of everyone who needs this to survive. It does not consider the number of disabled people needing help or the actual cost in states like Colorado where we have a very large rural community as well as effective disability programs. Most states would incur a new burden they are not capable of handling or able to manage properly.
People with disabilities will lose benefits that we need to live. Medicaid as we know it will be devastated, and no insurance company includes these long-term, home-based services that we need.
We can do better.
I am a strong advocate and believe in people helping themselves. But there are many cases when it’s simply not possible. I believe less government is usually better. But our government was formed to help preserve and protect the inalienable rights of life, liberty and the pursuit of happiness. Medicaid and Colorado’s HCBS program (created long before the Affordable Care Act) do this for millions of people with disabilities.
I am disabled from a mosquito bite. Disability is not a moral failing. It is not a choice. Medicaid and the HCBS program are what allow me — and millions of others — to be active, working and valued members of our communities.
Curtis Wolff is co-chair of the Colorado Participant-Directed Programs Policy Collaborative. This piece was originally published in the Denver Post.