On Tuesday, I received a notice from MassHealth informing me that my PCA hours were being cut. I rely on my PCA to help me with everyday tasks like bathing, dressing, and toileting.
I was immediately anxious. I need assistance around the clock, and my cerebral palsy hasn’t changed. It’s frustrating to know that people who have never met me make decisions that directly impact my health and quality of life.
I am working on appealing their decision right now. I am grateful that my medical providers are writing letters of necessity for me.
I rely on my personal care assistant (PCA) for everyday tasks — like going to the bathroom, taking a shower, making food, and getting around. Without his help, I couldn’t safely get to the bathroom, clean myself, make meals, or even travel to doctor’s appointments, the pharmacy, the grocery store, or anywhere else outside my house.
My PCA services are what help me stay healthy and safe, and let me be a part of my community. Home and Community-Based Services (HCBS) are the backbone of my independence, allowing me to live independently.
Home and community-based services help disabled people stay in their own homes, avoid going into institutions, and maintain their autonomy. These services help prevent unnecessary hospital admissions and save money on long-term care.
Medicaid cuts can have devastating impacts. Fewer services can make people sicker, lead to medical issues that could have been avoided, and force people into nursing homes or other places they really don’t want or need to be.
It often costs states much more to keep someone in an institution than to give them enough help at home. When hours are cut, the need doesn’t just go away — it just means more visits to emergency rooms, hospitals, and admissions to long-term care facilities.
Right now, I’m trying to appeal the decision they made. I’m collecting every document I can find, and I’m really thankful that my doctors are writing detailed letters explaining why this care is medically necessary for me. They know my past, they get my limitations, and they’ve seen firsthand how critical this care is.
Their support means a lot, especially since I feel like I’m constantly having to explain my basic needs to people that should already get it. This whole process is draining, but I’m not going to quit. I’m ready to explain exactly what my day-to-day life is like and why these hours are necessary for me to stay healthy and live on my own.
I’m hoping the appeal process will go smoothly, and I will have the hours I depend on. I’m trying to remember that I’m not alone in this. My doctors, my care team, and everyone who understands how important home care is have been supporting me. I deserve the care that keeps me healthy, stable, and allows me to stay in my own home — and I’ll keep fighting for it.