One Voice Can Make a Difference

Photo of Donelle
Photo of Donelle
Diagnosed with Cerebral Palsy when she was six months old, Donelle Henderlong got her first power wheelchair when she was four years old and nothing has stopped her since. Making her way through public school in mainstream classes, many of which were honors classes, after graduation Donelle chose to attend Ball State University in Muncie, Indiana to pursue a teaching degree. “I wanted a traditional college experience away from home and chose Ball State because it is one of the more accessible campuses for people in wheelchairs,” she said. “The school is nationally known for its wheelchair accessibility and its teachers’ college has a great reputation. It is also known as the school that David Letterman attended.”

The transition to an independent life at college had its challenges and Donelle found help with the student affairs professionals at Ball State. “I made some good connections with them and they encouraged me get involved in student life,” she said. “As I made my way through my college career and got more involved I began to think that I would like to be one of those people to help bring nervous students out of their shells and to help students get adjusted to college life.” Four years into earning her teaching degree, Donelle changed her major to English. After receiving her undergraduate degree in English she went to graduate school and received a Masters degree in Student Affairs Administration in Higher Education. “I worked as the Graduate Assistant for the Disabilities Services office in order to pay for grad school and I really loved the work,” she said. “A month after I received my Masters at Ball State in 2015 I began working as Disability Services Coordinator at Purdue Northwest.” Some of Donelle’s job responsibilities include working with students who need appropriate class accommodations for their disabilities and helping students get their needs met whether it is someone to take notes, closed captioning or other disability service. “I coordinate with the school to make it happen! I feel there is still a general attitude that students with disabilities can’t be successful in a higher education setting. I want all of the students I work with to know they can do this. They can go to school and work and do whatever they want to do.”

Donelle Henderlong’s work on behalf of those with disabilities is an important part of her life and her “can do” attitude is a positive influence on others. These qualities along with her experience and dedication made the 28-year-old a perfect choice to attend the National CRT Leadership and Advocacy Conference and “go to the Hill” to advocate for those who depend on complex rehab technology.
“I was invited to participate in the conference by Elaine Stewart with National Seating & Mobility. Elaine is the provider of my equipment and we’ve worked together for a long time,” Donelle said. “I was in Colorado learning how to sit ski when Elaine called to explain about the conference and asked if I would be willing to go. I didn’t know anything about the event and certainly didn’t know anything about lobbying, but I was willing to learn and I was excited for the adventure.”

When asked about her experience at the 2018 conference, Stewart said, “I was honored to be accompanied by Donelle and her mother Kathy this year. Donelle is a well-spoken young lady and her enthusiasm to affect change and be part of the larger picture speaks volumes. My hope is that she will empower others to be a louder voice so policy makers understand that everyone is important and deserves access to be part of our society.”

Of the approximately 160 attendees at the 2018 conference, Donelle was one of 30 who are wheelchair users. These participants meet with U. S. Congressmen and their staffs to provide them with a personal experience with individuals who depend on CRT to lead productive lives. “Elected officials need to meet people who are giving back to their community yet depend on rehab technology to make that possible,” she said. “I met with my local congressman, U.S. Representative Pete Visclosky and also with three legislative aides for other representatives. I was surprised when interacting with Rep. Visclosky by his nice, easy going manner. I felt completely at ease talking with him and he seemed very much invested in what I had to say. The legislative aides were professional and very thorough. They took many notes so I felt confident they would get my information to their representatives.”

“This entire experience in Washington, D.C. was very positive and I am so pleased that I could participate,” Donelle said. “I realized – I know this will sound cheesy – but I realized that if I’m not going to speak up, then who is it going to be? I may just be one voice but that may ‘shoulder tap’ another voice which may ‘shoulder tap’ another voice and so on until there is a change. Even though I’m just this girl from Valparaiso, Indiana perhaps I got someone thinking about something they don’t live every day. We need CRT funding legislation. Period. There is power in the human experience if we communicate it to the right people in an effective way.”

During “Capitol Hill Day” of the CRT conference, providers, manufacturers, consumers and consumer organizations, clinicians and clinical organizations, family and caregivers, researchers, and other advocates from a total of 36 states made visits to 240 Congressional offices. These individual voices combined to make a profound statement.

Donelle’s recent experience is proof that one voice most certainly can make a difference. A week after her visit with Indiana Representative Visclosky Donelle received word that he had signed on to HR 3730. This legislation, if passed, will stop Medicare from inappropriately applying Competitive Bidding Program payments to CRT manual wheelchair accessories. “I am elated,” she said. “We are working right now on following up with the other representatives in hopes to get their support, as well as continuing to build our relationship with Rep. Visclosky.”

Donelle’s experience as an advocate outside of her job responsibilities gave her confidence when she went to Washington. “If someone is interested in advocacy there are opportunities without having to travel. There is much work to be done on the local level. I’ve written to the Mayor about accessibility issues in our city. I’ve spoken to several groups and participated in a women’s march in Valparaiso,” she said. “I’m involved with different social issues in our community but never had I done anything at the level of having a one-on-one, face-to-face conversation with a U. S. Representative. However, I am certain these local activities prepared me for my trip to “the Hill.”

Another positive experience for Donelle during her participation in the conference was the personal interaction with others with disabilities. “At the conference I met a ton of cool people!” Donelle said. “There aren’t many people where I live that live independently with disabilities like I do. Meeting people from across the country who are living lives similar to mine really meant a lot to me. I would love to meet with more people who share my experiences and have the opportunity to see more of Washington, D.C. I would absolutely go back again!”


You may contact Donelle at donellehenderlong01@gmail.com.

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