By Alison Beier, Eastern Los Angeles Family Resource Center Project Leadership graduate.
This piece is part of Project Leadership In Action, a series highlighting some of the outstanding work our graduates are involved in.
Children’s Hospital Association held their 13th annual Speak Now for Kids Family Advocacy Day in Washington, D.C. July 12-13. Our family, which includes 7-year-old Evan who has multiple congenital anomalies, was asked to represent UCLA Mattel Children’s at the event. Much like a Family Voices of California (FVCA) Health Summit & Legislative Day, we were prepped upon arrival for our meetings with legislators the following day. In fact, the entire legislative day mirrored our experience at FVCA’s Health Summit in Sacramento this February.
We were fortunate to meet with Democratic House Leader Nancy Pelosi, California State Senator Kamala Harris, and Congressman Tony Cárdenas (from California’s 29th congressional district). We also met with staff from Congresswoman Lucille Roybal-Allard’s and Congressman Ted Lieu’s offices.
In our meetings, Evan and I told his story and explained the critical role Medicaid funding plays in our everyday lives. We touched on Regional Center funding and how Evan received speech, physical, and occupational therapies through their Early Intervention Services. We spoke of In-Home Supportive Services (IHSS) as I am Evan’s primary care provider through the program. Through IHSS, I am afforded the opportunity to be with my son 24-hours a day — no one is more attuned to him than myself. There have been specific instances where I, noticing a nuance in his behavior, have been able to get him the care he needs before it becomes a full-blown medical crisis. I believe the IHSS program has saved Evan’s life. In our meetings, we also spoke on the importance of mental health services being available for all, and what life was like before, and after, Evan was accepted into the Medi-Cal program. In short, we’re not bankrupt because we have Medi-Cal, but we easily could have been without it. Additionally, we advocated for the continuation of the Children’s Health Insurance Program (CHIP) funding, which is set to expire late September, and showed our support for the ACE Kids Act, which aims to improve care for children with medical complexity.
I covered most of the heavy stuff while Evan charmed whomever we spoke with. He was quizzed on his state capitals (he knows them all), personally escorted to the House floor by Leader Pelosi, and then led back to the floor by Rep. Tony Cárdenas where he voted on an issue for the Congressman. At his last meeting of the day, Evan secured Senator Kamala Harris’ vote for his future presidential run and was even featured on her Facebook and Twitter pages later that evening. Everyone we spoke with thanked us for telling Evan’s story and explained that this is the most valuable contribution we can offer to the cause: boots-on-the-ground advocacy is where real change happens. We were told our story was eloquent, impactful, memorable, and we were encouraged to tell it often.
My experience with FVCA Project Leadership empowered me to confidently share our experiences. Having a working knowledge of how legislation is created enabled me to feel comfortable when speaking with our legislators. Learning how to effectively tell our story proved invaluable. Because of Project Leadership and Family Voices of California, Evan and I were fully equipped to be most effective advocates with our time in front of our representatives. We’re honored to have had the pleasure to represent all medically complex kids — a privilege we took to heart. Our time on The Hill was a dream come true. Thank you Family Voices of CA for preparing me for every moment of it.