By Jay & Melissa Silverman
The National Down Syndrome Society held its annual Buddy Walk on DC the week of April 4, 2017. There were about 350 people from 38 states that walked the halls of Congress, visiting their congressional leaders. CDSPG had 2 families lobbying on behalf of our families, Justin & Kimberly Waszkiewicz, along with baby Nora from Havre de Grace and CDSPG Board member Melissa Silverman and Jay Silverman from Owings Mills.
The first day was training. The morning session, lead by Massachusetts self-advocate, John Anton and Wisconsin State Representative, John Jagler, discussed effective state advocacy. The message was to make yourself known to your local representatives and to leave your politics at the door.
The afternoon sessions discussed the NDSS 2017 legislative priorities:
1. Co-sponsor the ABLE Improvement Bills
2. Address the NDSS priorities to HealthCare/Medicaid
3. Ask to join the Congressional Task Force on Down Syndrome
4. Have FDA Oversight of Laboratory Developed Tests
5. Co-sponsor Congenital Heart Defect Research
6. Urge NIH to allocate additional resources for the Research Plan on Down syndrome
The 3 ABLE Improvement Bills were introduced to Congress the day before we marched to the hill.
Wednesday morning we were off to Capitol Hill to meet with our representatives. At our first 2 stops the entire MD delegation met with our senators’ staff. After introductions, Melissa did her color changing silk magic trick and said, “People look at me and see Down syndrome. They don’t see my abilities.” She then read a statement about cuts to Medicaid that would affect her supports. Senator Van Hollen’s Legislative Assistant, Ziky Ababiya was extremely knowledgeable about all of the issues, including the staff of the senators introducing the bills. She assured us that Senator Van Hollen supported all our concerns. We then meet with Arnold Solamillos, Health Fellow, from Senator Cardin’s office. Although, he was not familiar with our concerns, he told us he would relay them to the senator. Senator Cardin has been a support of issues that affect our families.
At the Champion of Change Awards Luncheon, Melissa and I had the opportunity to run in to Congresswoman Cathy McMorris Rodgers (R-WA), who has a 10 year old son with Down syndrome and Senator Van Hollen (D-MD) with Ziky Ababiya. Ziky received an award for her work to get the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act signed into law by President Obama on Dec. 19, 2014
Next was our hike over to the representatives’ offices to meet with our congressmen. We met with Kendall Strong, Legislative Correspondent, for Congressman Dutch Ruppersberger. Again, we had the same response from her as to the support of the congressman, who has been a great supporter of our issues in the past.
