On a beautiful autumn day in September, six accomplished adults came to Washington, D.C., representing the voice and experience of hundreds of others who share the common experience of being adults living with “pediatric-onset” neuromuscular disorders.
“We were the generation that was hoped for — and now we’re here,” said Vance Taylor, 33, a homeland security consultant from Washington, D.C., who has limb-girdle muscular dystrophy.
The National Neuromuscular Transitions Summit — hosted by MDA and supported by federal agencies and partners within our neuromuscular community — was a day of dialogue that brought together federal policymakers and young adult leaders within the MDA community to identify obstacles and opportunities for those who are transitioning to greater levels of independence.
The last few decades of research and medical advances have yielded substantial changes in the ways in which infants and children with neuromuscular diseases are diagnosed and treated, and has created a growing population of adults with “pediatric” neuromuscular diseases. But government supports and services were never created with our community in mind.
Thus, young adults often find themselves graduating from college and graduate school ready to take on the world … only to learn that there are very limited options for those who require the physical support of a personal care attendant for basic daily needs.
Throughout the summer, young adults across the country whetted the appetites of their elected officials to learn more about issues of transition by participating in MDA Fly Out visits and sharing their personal stories of triumph and struggle. (Fly Out visits with congressional representatives occur in individual districts while the representatives are home.)
As a result, elected officials have become more engaged and are beginning to understand such obstacles as how difficult it is to land and keep a good job without a well-funded personal care attendant.
The essence is freedom
Attendees at the Summit included officials from the National Institutes of Health, the Centers for Disease Control and Prevention, the U.S. Department of Education, and several other public and private agencies that work with people with disabilities. Former Maryland governor Robert Ehrlich, who created the nation’s first cabinet-level department of disabilities, was the keynote speaker.
In addition to Vance Taylor, five other extraordinary panelists testified:
The panelists were selected from among those who had responded to MDA’s online National Transitions Survey and the Summit agenda was directly shaped by the responses to the online survey.
Representing a wide array of locales, educational and career fields, neuromuscular disease communities and life stages, all of the Summit panelists shared an unflappable resolve when it came to goal-setting and achievement. Each panelist has achieved great success in his or her field, has found tremendous satisfaction in their personal lives, and has become a state and federal resource expert.
Governor Ehrlich perfectly captured the essence of the problem when he described it as an issue of “transitional freedom.”
For that is exactly what this Summit — and MDA’s entire transitional advocacy effort — is all about: the freedom for young adults with muscle diseases to transition from childhood to adulthood with the same choices and options as everyone else for education, career, independent living options and family structures.
As Aaron Bates remarked during the Summit, “disability rights is the civil rights movement of the 21st century.”
The daylong Summit was a stimulating day of discussion. But it was only just the beginning — and as the Summit went on it became very clear that there is a tremendous amount of work to be done.
You can be a part of this vitally important effort. To see video highlights from the Summit, please visit MDA’s Transition Resource Center. Here you also can click on the link to take the National Transitions Survey, and read the blogs about transitional freedom. Please consider being a guest blogger and getting more involved.
Annie Kennedy is MDA's Senior Vice President of Advocacy.