Here’s a list of just some of the policy changes that have impacted my life in the last nine months.

• The massive $1 trillion in Medicaid cuts passed by Congress: in anticipation of these cuts, states have already begun to restrict eligibility for services. Just recently, I had to surrender my financial autonomy & independence just to keep the vital caregiving assistance that allows me to go to the bathroom, take a shower, and do all my daily tasks. As the Medicaid cuts take further effect, I anticipate my caregiving hours will be reduced, and I will have less care and support.
• I had been scheduled to begin two new groundbreaking treatments for my Spinal Muscular Atrophy in December. These treatments had been in the works for years and the data shows great results. Last week, the federal government delayed the approval and shocked our entire community of doctors, researchers and SMA families. No word on when/if I will be able begin these treatments. (I suspect, given the funding cuts to Medicaid and healthcare, the government doesn’t want to pay for these treatments and decided to kick the can down the road.)
• The federal government cancelled Rare Disease Day in DC. This worldwide, annual event promotes awareness, support programs, and clinical research into rare disabilities, like mine.
• This week, the federal government revoked the policies that force airlines to protect disabled passengers in wheelchairs. Corporate airlines lobbied this administration to slash these protections to save themselves money and effort. It worked. It will now be more dangerous for disabled people, like me, to travel. This is a reversal of hard-fought disability rights.
• For “budgetary” reasons, many states are fighting to erode the federal protections of Section 504 for disabled adults & children in schools. This is an assault on the progress we’ve made to improve disability inclusion. The dismantling of the Department of Education (which enforces these policies) will make this worse.

I’m sad and tired of these systemic efforts to slash vital programs, services and policies that help my disability community.

What has our nation become? What’s next?