It has been a while since we posted an update here on our blog. Kelly traveled to Columbus, Ohio for the Ohio Brain Injury Summit in early October for two days immersed in the brain injury community. It was a wonderful opportunity to meet individuals she had worked with in the virtual meeting space but never in person. The first day ended with Kelly’s keynote discussing the importance of communication in brain injury recovery and how brain injury affects not only the patient but also their family members.
Conferences enable us to network and learn about exciting research and program developments for those living with brain injury. The Ohio Brain Injury Summit had an emphasis on pediatrics, brain injury as a chronic condition, disorders of consciousness, and the importance of forming communities to support one another. Apart from disorders of consciousness, Kelly speaks of all these in her keynotes and emphasizes the importance of building a team of support. The team should include representatives of the medical, educational, and employment sectors as well as other disciplines. Families rely on their community networks for encouragement and help not only during the initial injury stage but throughout the life span. Unfortunately, Kelly was unable to get any pictures during the event.
When Kelly is not speaking at these events, she continues to advocate for those living with brain injury and their families, and all people living with disabilities. These skills proved valuable over the past few weeks.
Because of her brain injury, our daughter will never be able to drive. Our county offers a limited paratransit service that helps her get to and from her classes at community college as well as her job at a local bakery. The service picks her up at our home and transports her to the school and the bakery. There are limitations to the service as there are with all public transportation systems but we are grateful to have this option.
Recently, our daughter was informed the service would no longer be provided on Saturdays. Her only option would be to walk approximately one mile to another pick-up and drop-off location. That is not a feasible option for several reasons. Kelly contacted the dispatch team and inquired why the service was abruptly discontinued and why we did not receive adequate notice of the change (only a day’s notice!). They apologized for the lack of notice but did not give further information such as policies and procedures or why the abrupt change in services.
After considering viable solutions, Kelly sent a letter to a local politician who works to improve services for community residents and businesses. Less than one hour later, Kelly received a reply apologizing for the confusion and informing us that these concerns were shared with the appropriate individuals who would investigate the matter and report back.
We received a reply three days later explaining the result of the inquiry. The change in service was incorrect; therefore, the service was reinstated effective immediately. As Kelly said, she felt the need to do a victory dance.
As advocates, we try to educate, inspire, and inform. In this situation, we looked for information to educate ourselves on why there were service changes and when the answers were not provided, we enlisted assistance from other sources. This inspires us to continue our advocacy efforts and tap into our community networks to assist us along the way when needed. Lastly, advocates do not work this only for themselves, we do it for all those in need and we inform others of these victories or changes in policy. Other community members benefit from this service and need to be aware of how to gather the most reliable information. We need to work as a community to support one another and lift each other up because without support we cannot achieve these goals.
Finally, we attended a fundraiser gala for the Specially Adapted Resource Club (SPARC) this past Saturday. The organization provides day programs for adults with severe disabilities in Northern Virginia. The first annual Gratitude Gala was held at a local hotel and we were surprised to learn this was their first fundraising event, as it sold out quickly and they did a fantastic job promoting it and getting sponsorships. There was both a silent auction as well as an open bidding auction of varying items donated by supporters. Senator Tim Kaine (VA) received the SPARC Hero Award due to his advocacy and support for federal funding of the organization. Many of the people he has worked with through his years of civil service are connected to the organization. Senator Kaine has always been a staunch supporter of healthcare and families in Virginia and the entire country. Kelly has met with the Senator’s staff various times on her visits to Capitol Hill for Brain Injury Awareness Day and his staff assisted us in getting a flag for our nephew’s graduation from Quantico Training School.
These relationships built through advocacy and working alongside others are essential to the work we do. They are developed and nurtured over the long term. Using the above transportation issue, it was a win. But it is not the only thing we work towards. Sometimes it takes letters, phone calls, and meetings to share our concerns. At times after months of persistence, the answer is “no.” It is a tough blow but we do not give up. We keep trying to build in more supports for all of those living with disabilities. We regroup and find out how we can continue the conversation. Hopefully, the next time we will get to a “yes” much quicker.
Kelly talks about how she did not get a degree in advocacy or brain injury. She never thought her passion would include speaking out for all those living with disabilities. She learned through watching others and building relationships with those who assisted her along the way. The community of support and resources helped her refine advocacy skills and learn diverse ways to speak out for those in need. She is still learning and strives to make life easier for all those who need additional assistance and support. Looking out for one another is important for the survival of any community.