An open letter to Congress

Though the healthcare bill the Senate will be introducing is different from the House version, it still makes major cuts in the way the Affordable Care Act (ACA) worked. Those with pre-existing conditions will no longer get a break and will have to pay more for their healthcare insurance. That will be very difficult for many Americans.

The Senate bill features major cuts to Medicaid that would affect poor and elderly Americans. As a nursing home resident, Medicaid pays the part of my room fee that I cannot cover with my Social Security Disability Insurance and a small amount of earned income. I wonder what will happen to me.

I am 68 years old, quadriplegic and have lived in nursing homes for more than 21 years. I moved in at age 47 for reliable care and more security. I was private pay for five years and spent the $350,000 my parents left me and the $50,000 in savings from when I worked full time to pay my room bill. Even though the pharmacy bills were outrageous, I paid them every month.

I lived for 14-and-a-half years in my first nursing home in a private room. In 2010, I was involuntarily discharged for having what that facility called "behaviors." I was moved to a nursing home 80 miles north. My present nursing home is smaller with 50 beds, but most residents have cognitive impairments. However, because of my computer, my window on the world, I can keep up with the news and stay busy and vital.

I do think Medicaid needs to be scrutinized and possibly restructured. I received my second power chair from Medicaid in 2016. The chair was ordered and delivered pretty quickly, but it was not adapted by the vendor to meet my needs. It took weeks to get it where I can actually use the joystick. It took months for other adaptions. I do not think there is any reason this should have happened. I did not want bells and whistles. I wanted a reliable power chair. Also, Medicaid vendors should be closer to their nursing home resident customers.

I would hope in the future nursing homes would be less restrictive. Residents, who are able, should be interacting with the community. I think nursing homes should provide a secure outdoor space where residents can spend some time when the weather is fit. I feel I am more caged than many living in U.S. prisons. I think communal living and close proximity causes the residents to have behavior problems.

It is quite apparent that Republicans and Democrats do not agree about how healthcare coverage should be accomplished. But we look to you, our elected representatives, to do the best for us. You are our advocates and speak for us – all of us.

I hope the healthcare bill can be adjusted so that it does not negatively affect the lives of nursing home residents, people with disabilities or poor Americans. Ultimately, we citizens can only tell our representatives and senators how we feel about these healthcare bills. Then, Congress must initiate and pass the healthcare law that we will have to abide by. I hope the final healthcare bill will be inclusive and work for the majority of Americans.

Kathleen Mears

Kathleen Mears is a long-time blogger who has been a nursing home resident for 21 years. She is an incomplete quadriplegic and uses a power wheelchair to get around. Her computer is her “window on the world.” This blog shares her thoughts and view of life as a nursing home resident as well as ideas of how it might be improved in the future.