Mic Drop With Kiarra

I interviewed my friend Kiarra who offered insights into navigating the complexities of CP during the transition to adult care and young adulthood Kiarra has Spastic Diplegic Cerebral Palsy 

What do you wish you learned more about when going through the transition from pediatric to adult care? 

It would have been nice to know that specialists don’t always treat every condition, even within their fields. I realized that most specialized providers who treat CP are pediatric once I started looking for adult ones. I was told multiple times, rather abruptly, that the provider I scheduled with did not or could not treat my condition fully. CP is one of the most common childhood disabilities–I was disheartened to understand that adult care of an equal caliber is underrepresented. 

Are there any providers that you wish were involved in your transition or could’ve been more involved?

Social workers are a vital part of the entire process. I transitioned all of my clinical care without one, which proved extremely tedious and difficult. I faced a rare circumstance where almost all of my providers were also transitioning out or away from NYU, and I did not have much of a buffer in terms of care management. Temporary providers could be useful in navigating situations like mine, especially if better-suited ones are not accepting new patients or are scheduled too far out. 

On a different note, there could be more emphasis on transferring IEP/504 accommodations into the college/post-secondary setting. Disability offices, in my experience, are mostly administrative. During my enrollment process and the processes with which I assisted outgoing high school seniors, it was difficult to understand what types of accommodations certain disabilities were entitled to. I didn’t exactly know what I could ask for, and often wonder if helpful things were misrepresented or overlooked.

And then, what advice do you have for a young person who is going through  the healthcare transition

Diversify your care as much as you can. I appreciate the idea that different people offer different perspectives. Healthcare transitions are surprisingly emotional. Health changes with age, in both good and bad ways, and it’s okay to grieve that uncertainty. I hugely support psychotherapy as a space to think about decisions when I start to feel overwhelmed. I constantly remind myself that there are people whose job it is to keep me healthy, and I have to trust them, even if I think I can figure it out myself. There are no such things as stupid questions; it is better to know more than not enough about properly informed decisions. If you’re debating whether or not to ask, ask.