Uncharted Territory:

This morning I watched Jane and Joe Grillo’s video about the trouble with Cerebral Palsy. The transition to adulthood is difficult for most people. When you have a disability, though, it can be more difficult. For me, navigating independent living and healthcare has been particularly challenging.

I moved out in August 2020. I was able to find an apartment that worked well for me. Finding accessible housing is tough. In February 2020, Apartment List conducted a study based on data from the American Community Survey and the American Housing Survey. According to the survey, only 9% of households with a disabled family member live in an accessible home. Despite the fact that more than 15% of American households include a physically disabled member, just 6% of homes are accessible. Although it doesn’t have a roll-in shower, I use a transfer bench to shower right now. I hope to have an accessible bathroom next year.

Last year when I turned 22, I was no longer eligible for pediatric medical care. I was fortunate to find a primary care physician within my current medical practice. I just switched from a pediatrician to an adult primary care physician. I was unable to continue receiving care at Boston Children’s Hospital as well.

It can be challenging to find specialty care as an adult with CP. However, I was able to transition over to Spaulding Rehabilitation Hospital with ease. I found a new physical therapist as well. I hadn’t received therapy services in two years when I began working with my current physical therapist. He helps me with pain management and spasticity through a variety of different exercises.

Adulthood with Cerebral Palsy is a challenge. This journey hasn’t been easy. I am grateful for the support of my family, friends, and healthcare team who have made me more comfortable, and confident. I know how to be independent, and I am proud of myself.

Source:

Warnock, Rob. “How Accessible Is the Housing Market?” Apartment List , Apartment List, 19 February, 2020, http://www.apartmentlist.com/research/how-accessible-is-the-housing-market.

Leave a Reply

%d bloggers like this: