By Maureen Gaynor
Dread. Our President has embedded dread into my vision of what my daily existence may be like in the near future. You see, I am a woman who has severe athetoid cerebral palsy. I depend on people to assist me in just about every physical aspect of my life. More about my own situation in a moment, but I am not alone in this feeling of dread.
There are about 4,200 people in Rhode Island who have developmental disabilities, according to the state, and we all depend on Medicaid, which supports programs to assist us in living our lives as inclusively as possible.
But President Trump has proposed a budget that would decimate Medicaid. By capping Medicaid spending, President Trump would cut an estimated $610 billion to $1.3 trillion over the next decade, with the higher figure also taking into account the effects of the health care bill that recently passed the House. When I look up ‘decimate’ in the dictionary, it means to “kill, destroy, or remove a large percentage or a part of.” That is a word used to describe wars, plagues and atrocities that should be avoided at all costs to preserve human life. Let’s take a good, hard look at the very real effect these astonishing budget cuts would have on people with disabilities, starting with my own case.
I have done my hard work getting where I am today. I come from a hard-working family that respects hard work and also values the concept of the family down to the core. My parents, who never got degrees but valued education, expected all of their four children to go to college, and they succeeded in that goal. I was the one who drew the short straw when I was born a half century ago. But I have learned not to let my cerebral palsy define me. And I wasn't given a free pass out of being successful. I wanted to be successful, and that drive is even stronger today. I became convinced that I could design buildings and residential homes to be more accessible for the disability community. In 1990, I graduated from New Hampshire Technical College with a General Associates degree in Building Construction Technology, followed by graduating from Roger Williams University with a Bachelor of Science degree in Architectural Studies. Unfortunately, jobs have been sparse since 1993. Given my education and experience in the construction field, and my love in designing kitchens, I am pursuing work in kitchen design.
But my cerebral palsy DOES limit what I am able to do, physically, for myself. As I said, I depend on people to assist me in just about every physical aspect of my life. Activities like eating meals, dressing, showering, brushing my teeth, doing laundry, using the bathroom and a multitude of other activities I need assistance completing. I need someone to adjust the head pointer I am using to write this article. All of these activities of daily living are needs—my needs are not “luxuries.” I need to eat, or I will starve. I need to use the bathroom, or I will get severely ill. I need to shower, or I will smell.
President Trump, along with his Secretary of Health and Human Services, Tom Price, want to impose Medicaid Block Grants on all states, based on each state’s per capita ratio. This means the federal government will allocate a pre-determined Medicaid budget for each state. Each state must work within that budget. Each state has its own Medicaid budget. People with disabilities have different levels of need. How is such a strict Medicaid budget going to cover all of the variable needs of people with disabilities? President Trump has difficulty understanding the Constitution, let alone the needs, and the dreams, of people with disabilities. I am convinced that President Trump hasn't sat down and had a genuine conversation with a person with a developmental disability. Dread sets in once again.
So, what would my life under a Medicaid Block Grant system? My dread comes from the expectation that services will be severely cut back, because the state will not be able to make up for the federal cutbacks and will have to stretch out the available dollars by reducing services to everyone. Here’s what I fear will happen to me:
My supports to find employment will immediately disappear. My hopes and dreams centered around working as a kitchen designer would be dashed because I wouldn't have any community hours. Instead, that money would have to be spent on supports for someone else to get out of bed.
My daily community supports would cease. Getting out of the house would be another “luxury” for people with disabilities. If I cannot go to the supermarket, how would I buy groceries? Well, I guess I will have to find someone who will shop for me.
If these devastating Medicaid cuts pass and my services are reduced, I would need to stay in bed three hours longer each day, because I can’t get up on my own and there would be no one to help me. I would have to go at least 14 hours without eating. By the time I would get up, I’ll probably eat around 1 pm. What would I eat—breakfast or lunch? I would have to eat a lot because I would only have time to eat two meals a day.
If I’m not mistaken, don't prisoners get three meals a day? I think they do. I, who never committed a felony, who was born with a brain disorder, and who has graduated college from Roger Williams University will be only allowed to eat two meals a day because President Trump dreams of building this “magnificent” wall on the Mexico border.
Can somebody tell me where the fairness in this scenario? If I was face-to-face with the President, Tom Price or Paul Ryan, Speaker of the House, could anyone of them explain to me where the fairness is? I don't think anyone of them could give a reason why it is more important to have a border wall rather than providing people with disabilities adequate time to eat three meals a day, and to have a life that they can call their own.
My biggest fear is the re-emerging of state institutions if these Medicaid cuts go through. Medicaid money would run so thin that there will not be any other choice to care for the vulnerable people with disabilities by re-creating “collective housing” to care for their basic needs.
We cannot allow this administration to turn back the hands of time on the progress the disability community has made in the last century. The mindset of this administration is deplorable. We must rise up as a country and recognize all people must be treated equal.
Maureen Gaynor, of Smithfield, RI, is a social activist. She was one of four people who were arrested in Sherborn, Mass. on Inauguration Day, Jan. 20, after a reading of grievances against President Trump and a peaceful procession that blocked a road, prompting police to stop traffic. Gaynor can be reached at firstname.lastname@example.org