Diane Glass, an adult with Spina Bifida from Iowa, was a member of “Tom’s Team” – a scholarship recipient from Tom Baroch Memorial Scholarship, which was generously donated by his family in memory of Tom, an adult with Spina Bifida who passed away in November 2018. Scholarships were also awarded by Chapters using funds raised at their Walk-N-Rolls.

When reflecting on her experience at Teal on the Hill, Diane had this to say:

Presence on Capitol Hill

The power of storytelling was evident in our presentation to congressional staff. One of our asks—that Congress pass H.R. 2293 and S. 1223 to stop CMS from continuing to inappropriately apply the Competitive Bidding Program pricing to accessories for Complex Rehab manual wheelchairs—may appear of minor importance and easy to dismiss. But put a person who needs “accessories” like seat/back pressure relieving cushions, positioning devices, recline/tilt systems and specialty controls in front of a decision maker and the critical importance of this legislation becomes apparent.

One team member described how her lightweight wheelchair, back cushion and special wheels allowed her to lift the chair herself into her car, comfortably get around and continue to work. Without those accommodations, her job and her life in the community would be in jeopardy. I was wide-eyed as I too learned the needs of people with complex conditions that require these features.

Storytelling works big-time. We can do that through a variety of means but nothing beats a face-to-face encounter with a decision-maker.

We had 115 persons attendees from 27 states, meeting with 80 members of congress and their staff in one day. That’s power! SBA did an amazing job of organizing this effort. We have a terrific staff at national and I was happy to meet them in person. It was also thrilling to meet so many other people committed to this effort. I have made some new friends.

Thanks, in part, to Donna Jones’s testimony as an adult with Spina Bifida before the House Subcommittee on Appropriations for Labor, Health and Human Services and Education on April 9 and our follow-up, we have succeeded in winning approval in the House Appropriations Committee for increasing funding for the Spina Bifida Program from $6 million to $8 million for this next fiscal year. Now we must follow-up with all of our House of Representative members and the Senate to make sure this increase passes.

Spina Bifida Program at the National Center for Birth Defects and Developmental Disabilities at the Centers for Disease Control

We now have about 10,000 people in 24 Spina Bifida Registry Clinics from which to do research. This Registry allows us to track interventions with persons with Spina Bifida and to determine their efficacy. Those studies together with the Guidelines for the Care of People with Spina Bifida developed by the Spina Bifida Collaborative Care Network help us improve care. The program has also engaged 9 clinics in a urologic protocol to protect kidney health. We are encouraged to provide input on research needs.

I talked with Rep. Cindy Axne’s legislative director, Denise Fleming, about my own life history—born in 1947 and taken home to die, about the difficulty of finding medical care, and the lack of awareness of my providers about Spina Bifida. My team members echoed this concern about the lack of clinics focused on adult care. She asked how doctors are trained about this birth defect and we were able to tell her about the lack of in-depth training of any kind.

Additional funding will help us address critical issues: why adults with Spina Bifida are dying unexpectedly, what are the social determinants of health within registry participants, and what are the barriers to transition to adult care and models for care delivery to adults.

This trip also raised a question we have talked about before—why is there not a Spina Bifida clinic that treats adults in Iowa?

Guidelines for the Care of People with Spina Bifida

We need to educate people with Spina Bifida about these guidelines urge them to take the guidelines to their doctors. The education of medical professionals may depend on us at this stage. Hopefully down the road, we will have a better-informed medical community.

Follow-up is Critical

Our community statewide should follow-up with their own House representatives and our Senators. An easy way to do that is to go to advocate virtually with a few clicks by clicking here.

This experience taught me several key facts:

*We must be present in person on Capitol Hill to educate legislators and their staff on issues affecting our constituents and others with disabilities. This in-person presence must be followed up with regular communication with our congressional offices.

*The Spina Bifida Program, budgeted at $6 million for the last five years, cannot accomplish its aims without additional funding. We were able to make progress on that front. More on that later.

*The Collaborative Care Guidelines for care of persons with Spina Bifida will have the desired impact only if as users of medical services we take them to our doctors and make them aware of recommended standards for treatment and support.

I was honored to represent Iowa at Teal on the Hill, May 6-8, thanks to a scholarship established by Tom Baroch, an adult with Spina Bifida who died last year.