Last week, I had the opportunity to talk with Jane and Joe Grillo about transitioning to adulthood with Cerebral Palsy. Transition planning began when I was a freshman in high school. My transition plan was little more than a few sentences that were included in my IEP. When I graduated from high school in 2018, I was unprepared to figure out how to live as an adult with CP. Most recent high school graduates are nervous about their futures; my disability made this time even more nerve-wracking.
As soon as I graduated, I lost all the support my school district provided. Following my graduation, I began to experience increased spasticity and chronic pain. I soon realized that I might be experiencing more pain because I was no longer receiving PT. It wasn’t until January 2020 that I began receiving PT again.
I lost my paraprofessional as well. This was even more concerning to me. Once you are an adult, securing support is up to you and your family. In my case, I had to request additional PCA hours from Medicaid. Once I received more hours, the next hurdle was finding PCAs. This proved to be very difficult. I went through three PCAs in three semesters of college. This made college extra stressful. I began to question whether or not college was worth the stress I dealt with.
Long waiting lists can mean that disabled people are without support to help them live their lives. In Minnesota, hundreds of people are on waiting lists for day programs where they can socialize and participate in various activities. People on waiting lists are frequently stuck at home during the day because they have nowhere else to go. In Texas, thousands of people are on the waiting list for home and community-based services provided by Medicaid.
Receiving accommodations is also much more difficult in adulthood. Colleges aren’t obligated to provide accommodations unless a student requests them. It was a struggle to ensure that I had all of my accommodations. I also had to reapply for them every semester.
On my 22nd birthday, I was no longer eligible for pediatric medical care. I had been a patient at Children’s Hospital Boston since I was ten. Fortunately, I’m able to receive care at Spaulding Rehabilitation Hospital. I could stay with my primary care office; I just had to switch to a different doctor. This made for a smooth transition.
My next goal is to become employed. This has also presented many challenges. Often, when employers find out that I have Cerebral Palsy, they are no longer interested in hiring me. In the past three years, I have filled out hundreds of job applications. My request for a PCA in the workplace is also frequently denied. Hopefully, one day, I’ll be able to work. I’ve always wanted to work for a living.
Disabled adults exist. We don’t outgrow our conditions on our 18th birthdays. More needs to be done to ensure that all people with disabilities can live their lives to the fullest regardless of age.
Sources:
“Number of Persons on Medicaid 1915(c) HCBS Waiver Wait Lists, 2016.” Center On Disability , Center On Disability , 31 Dec. 2016, https://centerondisability.org/ada_parc/utils/indicators.php?id=9.
Serres, Chris. “’The System Is in Ruins’: Minnesotans with Disabilities Feel Left behind amid Workforce Shortage.” Star Tribune, Star Tribune, 4 June 2022, https://www.startribune.com/the-system-is-in-ruins-minnesotans-with-disabilities-feel-left-behind-amid-workforce-shortage/600179296/.