Guest Post: Do You See The Work of UCEDDs?

Have you heard the term University Centers for Excellence in Developmental Disabilities? There are 68 UCEDDs throughout the United States, at least one in each U.S. state and territory. UCEDDs work toward a society in which Americans with disabilities participate fully in their communities, with independence, productivity, and community inclusion as core values. UCEDDs facilitate the flow of disability-related information between community and university by working with people with disabilities, their families, state and local government agencies, and community providers in projects that provide training, technical assistance, service, research, and information sharing. It is highly likely that if you or a family member have a disability, you benefit from the work of UCEDDs whether you realize it or not.

I was born ten weeks premature and weighed only three pounds and two ounces and had brain damage (the medical term is Periventricular Leucomalasia, and the common catch-all term is cerebral palsy). There are many ways that CP can manifest itself, so my parents and my doctors were watching my development carefully. Close monitoring determined that I was developmentally delayed and needed various early interventions which began immediately. When I was nearly three years old, I attended a private preschool that incorporated physical therapy, occupational therapy, and speech therapy into the day, along with learning and social opportunities. The next year, after diagnostic testing, I was able to attend preschool at my local public elementary school, receiving the interventions I needed.

When I moved to another state, I was initially placed in a medically fragile preschool classroom with two other students. My needs for socialization and peer modeling were not being met. I had new evaluations and testing and was moved to a regular private preschool where I thrived and developed long-lasting friendships. I am not aware of direct involvement from the state UCEDD, but I believe their research and training contributed to this placement. This placement also proved I could handle a mainstream classroom environment with supports and adaptations. I was in a mainstream classroom from then on. Being in a mainstream classroom allowed me to interact with many other children and show them my capabilities. I was well-accepted and enjoyed being included in group activities, lunchroom chitchat, and activities outside of school.

One of the most fun opportunities I had growing up was attending an assistive technology camp. Teams of professionals from across the state showcased tools and strategies to meet assistive technology needs. Topics included mobility, speech communication, sensory, feeding and swallowing, and activities of daily living. My parents learned a lot, but I remember all the fun, arts and crafts, and the chalk machine hooked to my wheelchair so I could draw on the sidewalk for the first time. An added bonus was that my brothers could come and do all the fun activities as well. The state UCEDD certainly played a role in the success of this event.

The summer before seventh grade, I moved to a third different state. We were fortunate enough to live a few minutes away from a university that had a UCEDD. Specialists from all over the state came to the university to participate in clinics for children with disabilities and health care needs. I attended several of them. For example, I had a college student studying fashion design meet with me to explore ways to make clothes easier to get on and off for people with disabilities. Discussions like this helped us start thinking about the idea of making adaptations. I have continued to make such adaptations throughout my life, such as putting a camera case in my wheelchair cup holder to carry my cell phone. 

Halfway through high school, I moved to yet another state (that’s four, if you’ve kept track). I was much older and my goal was to have a great GPA and go to college. During college, I was able to be part of an initiative sponsored by the UCEDD, which looked at the ways people with disabilities might utilize their pre-existing church communities to network and find employment. I learned the importance of networking and putting myself out there. UCEDDs have the personnel and resources to explore questions like this and come up with creative ways to improve the lives of disabled people.

Before writing this post, I did not realize how much UCEDDs have impacted my life. What I know is that my needs were met. I believe that UCEDDs were a part of meeting those needs, since they provide training, research, technical assistance, service, and information sharing. After all, the more we can find and share information about developmental disabilities and receive training, the better we can help people with developmental disabilities succeed. The work of UCEDDs may be hard to see, but it is vital, like the foundation of a house. Take away the foundation and the house falls.