Ever since I received a notice from MassHealth informing me that my PCA hours are being reduced I’ve felt upset. I hope the appeal process is successful, but it’s frustrating.
I’ve spent the past three weeks preparing my appeal packet. It’s been an emotional process. Having to justify my needs isn’t easy. On Thursday, I felt so overwhelmed that I wasn’t myself at my physical therapy appointment. My PT noticed immediately and let me rest when I needed to.
Yesterday, I finally submitted my appeal request form and supporting documentation to MassHealth. This week was spent collecting additional evidence. On Tuesday I worked with my PT to create a letter of medical necessity in support of additional PCA hours.
We discussed my limitations and how cerebral palsy affects my everyday life.
It is difficult to hear myself being talked about in clinical language. I feel like it lacks humanity.
At the same time, this is the reality that so many disabled people encounter: we are reduced to forms, assessments, and criteria. It makes me uncomfortable to sit there and listen to someone describe me in terms of what I cannot do, even if they have good intentions. It’s even more frustrating to know that these descriptions, these clinical, cold phrases, determine if I get the support I need to live safely and independently.
However, what struck me was the impact of working with my PT on the letter of medical necessity. He was very thoughtful. He asked meaningful questions and really listened to me.
Rather than me being reduced to a checklist, he thought of the letter as an opportunity to advocate alongside me. It made the whole process less isolating to have someone on my side who shared the human and clinical side of my experience. Even in a system that feels cold, it reminded me that there are people who truly want to help.
My situation is not an isolated incident it is only part of a larger system that requires disabled people to constantly justify their needs. PCA hours are not a luxury. Without those hours, I wouldn’t be able to leave my home. And when those hours are being taken away, so too is my independence.
Submitting the appeal packet felt like a way to take some power back within a system that often makes disabled people feel powerless. I’m proud of myself. But I’m also saddened that it falls on us, time and time again, to prove that we deserve the support that allows us to live our lives.
These decisions aren’t being made in a vacuum. They affect real people with real routines, real relationships, and real lives. When care gets cut, independence gets cut too. With everything submitted, I’m trying to hold onto hope. I also believe that telling these stories is valuable. It’s one way to fight against a system that all too often overlooks the humanity behind the paperwork.