Potential Medicaid Cuts and Disability Care

My husband and my brother participated in the recent St.Patrick’s Day 5k.

Life isn’t fair. All but a few fortunate people know this, and most have experienced it firsthand. We aren’t all born equal, despite what we’d like to believe. Some people are born with a silver spoon, and others with a paper plate. There is no denying that some races are given preferential treatment, and being male gives an automatic advantage in most areas of life. However, one of the most significant examples of disparity is for those with intellectual disabilities.

Last week, I got a call from my brother’s home. This isn’t unusual, but due to my brother’s history of issues, there is always a shiver of dread when I hear the nurse’s voice. This time, the news wasn’t an immediate crisis but rather a concern that my brother’s dementia was progressing rapidly. While I’m grateful for David’s caring medical professional team, my immediate reaction was anger. I was not mad at the doctor or the nurse. I was angry at the “universe” or God, or whoever the heck is supposed to be in charge. I know life isn’t fair, but come on, this seems extreme. David has a low IQ, impaired vision, limited verbal abilities, mental health issues, and now he has dementia. I was aware that people with intellectual disabilities tend to develop dementia earlier than the general population, but knowing a fact is different than having it strike home.

Having grown up with a sibling with disabilities, the lack of justice in life is far from a novel concept for me. I’ve had the front-row seat to witness my brother’s struggles for sixty-one years. I’ve been there for his mental, emotional, and physical pain. My heart has broken for him so many times that it’s permanently altered. After approving a change in medication for David’s dementia and before moving into action, I indulged in a much-needed moment to feel sorry for my brother’s worsening dementia. I had a pity party on his behalf.

This is a stressful time for people with disabilities and their families. There is the threat of Medicaid cuts, which would drastically limit medical care, therapies, job skills training, home-based caregiving, availability of medical equipment, and housing for people with disabilities. Then, there is the destruction of the public education system, which could mean a significant change in the services provided for special education students. I’ve lost too much sleep wondering how the current administration’s cuts will affect my brother’s and, therefore, my life. There also seems to be a decrease in compassion for people who have extra challenges in life. Maybe I’m imagining it, but the proposed budget cuts seem to support that feeling.

We’ve been so fortunate that David has lived in a home he loves and where he is well cared for during the last twenty years. He likes having people around, and although he often chooses to watch TV, there are opportunities for activities. His home goes the extra mile to transform a facility into a true home. That’s not something I take for granted. They recently hosted a formal prom for the residents and invited several other homes from nearby towns. The staff spent weeks gathering formal attire for all the residents. There was a red carpet, a limo, a DJ, and refreshments. When I talked to my brother the day after the dance, he was still giddy with excitement. He has a full and happy life, and it would be devastating if he had to move.

If David had to live with me, which is a possibility if Medicaid cuts force the closures of care facilities, the results would be difficult for him, my husband, and myself. As we did this past weekend, we occasionally bring my brother to our house for weekend visits. My husband and I love my brother, and working together as a team, we provide a safe and fun visit for him. But the reality is, we’re heading towards seventy, and it takes everything we have to do what’s necessary for a weekend! As David’s dementia progresses and I age, the level of quality caregiving I can provide is decreasing. I will do the best I am able, but what about the many people with disabilities who have no family involved? My heart aches for them and their future if Medicaid cuts force the closure of homes and facilities for people with disabilities.

Life is difficult. Life is wonderful. People are kind. People are cruel. There is happiness. There is despair. The world contains light and goodness. The world contains darkness and evil. All of these things can be true at the same time. What I know for certain is the veracity of my favorite quote, “The true measure of a society can be seen in how it treats its most vulnerable citizens.” Despite what some have said recently, empathy is a strength, not a weakness. My fingers are crossed, my breath is held, and my prayers are fervent that our country will do the right thing and provide for those who need it the most. That is what good people and good countries do.