Patient Spotlight: Kathleen Downes

Kathleen Downes with Dr. David Roye

Meet Kathleen Downes:

I am 26 years old and from Floral Park, NY. I am a licensed social worker and a two time graduate of the University of Illinois at Urbana-Champaign, where I earned degrees in Community Health/Rehab Studies and Social Work.  While at the university, I lived in a supported residential setting for people with significant physical disabilities called Beckwith Residential Support Services. I have quadriplegic cerebral palsy and enjoy advocating for disability rights. I currently coordinate workshops for the families at an adaptive dance program called Dancing Dreams and write my own blog, The Squeaky Wheelchair. My work has also been featured in Huff Post and Women’s Media Center.

How did you find the Weinberg Family Cerebral Palsy Center (WFCPC):

I was already a patient of Dr. Michael Vitale’s at the Morgan Stanley Children’s Hospital as a teenager and I knew of Dr. David Roye because he operated on many of my friends as children. Luckily, the WFCPC was opening just as I was due to age out of the pediatric system and my mom found out about the initiative at a conference in 2012. We were and are so grateful that I am able to continue receiving care as an adult because there is such a paucity of knowledgeable providers when it comes to cerebral palsy–without WFCPC I wouldn’t really have any options. 

My first interaction with the Weinberg Family CP Center was working with Dr. Heakyung Kim, who is an incredible doctor and a great person. I recently had a hip osteotomy with Dr. Roye after dealing with persistent hip pain and he has been so kind and I am very appreciative of all he has done to help me.

How has the Weinberg Family Cerebral Palsy Center impacted your care:  

CP is traditionally classified as a “children’s condition” when it is actually a lifetime condition. We don’t disappear into thin air at age 18 and our healthcare system must reflect that. One of the goals of medicine has historically been to give people with disabilities and medical conditions long lives–but to ensure long lives is not enough. We need comprehensive care that ensures not just length, but quality of life through the years. Generally, turning 18 with a disability is like falling off a service cliff in every aspect of life. Even though adults with disabilities have always been and always will be here, the larger medical community (and society in general) tends to treat us like unicorns…and often greets us with a sort of, “what do we do with you?” attitude. It’s super frustrating to essentially remind doctors on a regular basis that you do, in fact, exist.

The existence of WFCPC means that I have a place where people are well-versed about my disability and a place where I don’t have to deal with the too-familiar feeling of abandonment by the healthcare system. It would be the easy choice to turn away from the daunting task of bridging the pediatric-adult care gap, but these providers have instead made the choice to turn towards us, to support us, and to play a part in changing the culture of care. That means a lot to me!

What is one thing you would like people to know about the Weinberg Family Cerebral Palsy Center?

The work that the Weinberg Family CP Center is doing is crucial. There is no age limit on the need for quality medical care. I’m so glad WFCPC recognizes that we adults with CP are here and we’re not going anywhere.