On Tuesday, I had my reevaluation with my new personal care management agency. They determined that my decrease in PCA hours was due to MassHealth removing my night hours. I was frustrated because none of my paperwork had explained why I’d lost those hours.
I need care around the clock. If I need to use the restroom or get sick overnight, I need someone to help me. If there were a fire or other emergency, I would also need help. Cerebral palsy doesn’t go away overnight.
I explained my routine to the nurse and showed her my equipment. I also provided her with updated medical records and my documentation packet.
She paid attention when I was explaining what my life is really like. I shared with her how every aspect of my daily life actually revolves around having someone available, 24/7. Illnesses, falls, and other emergencies don’t happen from 9 to 5.
Finally, she realized that eliminating my nighttime hours didn’t make sense with the level of care I require. She promised to review her evaluation and submit the revised paperwork to MassHealth.
Getting that news was comforting; on the other hand, it was a struggle to accept. It’s really exhausting constantly having to justify needs that have been known for a long time. Cerebral palsy doesn’t stop at the end of the day, and my safety shouldn’t be a question.
Having the hours taken away from me without any explanation made me feel like I didn’t matter. A life-altering decision was made without considering the outcome. There was no letter, no call, just fewer hours and the expectation that I’d somehow keep going. It is heartbreaking when you realize that the people and systems that determine what you need can pull it out from under you and not even tell you why.
Nonetheless, I was glad that someone did listen. The nurse recognized how dangerous it can be to lose critical support so suddenly and without any warning.
She promised me that she would revise the evaluation and would explain why those night hours are needed. Afterwards, I was cautiously optimistic. Finally, someone understood the situation that I am living with every day.