Me: why are you so depressed today self? It’s ridiculous it’s gorgeous outside. You just saw a big happy group of your family this week and had a magnificent time. So pray tell why are you so depressed today?
Me: well it’s like this, Me. I’ve done a good read of the bill. You know the one the health-care bill that may affect as many policies and patients as 74 million people. And that bill literally targets me and people like me. But I knew that before today. Today I was very proud. I saw my tribe, full of people that move around like me via power chair. They were chanting.
” No cuts to Medicaid. Save our Liberty.”
Just outside of Mitch McConnell’s office. They knew there might be confrontation. In fact some of them counted on it. And they weren’t afraid. They were there to make sure that all of us that ambulate like they do, as well as the broader disability community had a voice and what was being done to them. In what will be done to them over the next 10 years. In what very well will be done to me in the next 10 years. This particular billl and provisions of the Trump budget slashes not only the expansion but Medicaid as it existed even before the ACA is being cut. Medicaid takes care of disabled children in America. Medicaid takes care of disabled adults in their homes for a less money then caring for them in nursing homes. Some of those disabled adults can actually work, be taxpayers, hold down a job because of those services that Medicaid provides to them. Having a home health aide can be either the difference between living at home and managing your own life and living in an institution and being managed, or the difference between staying at home and working.
The program also takes care of many poor and middle-class elderly. It becomes their long-term care insurance to take care of them in nursing homes. It exacts a harsh price, because all of their assets must be spent away before Medicaid can kick in. But it is a safety net. Once it does kick in they are covered in the nursing home for the care that they receive.
I’m very sad. I’m not just scared for my own sake although that’s there. I saw so many older folks when I was in nursing home prison. They were alone. Alone in a way I don’t think people on the outside can’t even begin to grasp. Many of them had no friends and most of them had no family that came to visit. They might be wrestling with dementia or some other mental condition did made it confusing even terrifying to be where they were. And to have the basic idea of care cut from them. A hospital bed to sleep in. Competent, compassionate nursing care. Health care aides that are both cheerful and good at what they do.
Patients in nursing homes barely get that now. With the system as it exists now. Make cuts and who knows what will happen to them.
I keep mostly to myself in this building. It is an apartment building designed for people with disabilities. I worry about my neighbors . How will they be impacted by this law? Each person with a disability has their own way of managing their life. Their solutions will be different the magnitude of the impact of this law will be different particularly if they are on Medicaid. However employer insurance is going to be impacted,too, with the return of individual or lifetime caps and higher deductibles on the group Insurance Market. And there are major changes coming to the exchanges for those who got their care through those exchanges. So I worry about my neighbors too.
What’s going to become of us?
ADAPT, the advocacy group that lived the protests today has a slogan. “Nothing about us without us.” They were there today. They were part of the discussion about this bill. Once this bill is passed and becomes law, that slogan changes. That slogan becomes: All About Us without us.