Hello. My name is Raul Carranza. I have a disease called Muscular Dystrophy. It’s a progressive disease that prevents my muscles from making any energy. This, in turn, causes the muscles to atrophy over time, I have lost the ability to walk, move my arms, eat and breathe. Because of this I require around the clock nursing care. But this has not stopped me from striving for an independent life.
Last year I moved away to UCLA by myself and lived away from my family for a whole semester, that’s me in the picture at orientation. Unfortunately I had to come back home to San Diego at the end of December. One of the reasons I had to come back was because I was involved in a battle with the State of California over my nursing hours. The state funds my care through a program called The NF/AH waiver, under this waiver pediatric patients get more money than adult patients.
There are 3 categories in the waiver, they are: A/B, sub acute and acute, acute being the level with the most funding. Medical put me in the sub acute level of care, even though I qualify for the acute level of care. We appealed their decision and went to court with them, we managed to convince the Judge that I was, indeed, qualified for the acute level of care. However, the director of the program overturned the judges decision, and provided no reasoning for his decision.
We have been forced to purchase a private insurance that costs nearly $500 a month, not including out of pocket costs. The private insurance was supposed to cover the cost of the nursing hours that were cut. That’s not how it works, however. MediCAL won’t pay for anything until the private insurance gets billed. This has led to a situation where my medical bills have been piling up. I’m already thousands of dollars in debt and MediCALwon’t cover anything more.
Right now, the only thing I want to do is go back to UCLA. Unfortunately, that is not possible unless I get the care that I need.