On the road again - Last week Donna Provenzano, Dir. Family Centered Care, Child Life and Rec Therapy; Heather Valeo, Family Faculty member and Heather's five year old daughter Bella went to DC as part of a national effort by the National Association of Children's Hospitals.
The Valeo's were one of thirty families to sit with Members of Congress and their staff to tell our story. Members of congress will always see me as a "suit," a passionate suit who won't stop talking about Children's Specialized Hospital, but still a suit. It is when they can meet a family in person and hear directly from them what the services that we provide mean to their lives, there is absolutely nothing more powerful. We found that again this week.
After Heather told her story and I had gotten off my soap box about the injustice of the latest rules from the federal government that would eliminate Medicaid payments for any service where the child hadn't lost a skill but never had it in the first place, Congressman Ferguson offered his hand for Bella to shake. Being 5 she gave him a great big "squeezy" bear hug. And as long as she was up there, decided it would be a good time to play with his ears, because they were there for the taking. Being the father of 4 young children, Congressman Ferguson said he felt right at home. I guarantee you while he may have had 20 meetings that day, this is the one he will remember at the end of the day. Not my rants about CMS but Bella. And then when I go back the next time and ask for one more thing for the hospital, he will remind me of that wonderful day.
Advocacy is tough - it is not always about being right on the issues. It is about being right on the issues and touching someone's heart in the right way so they will stand up and fight for us. We are blessed with a Congressional delegation that will fight.
Part of the way we stay present, is the press stories. Please don't forget if you have great things going on with a child and you think the folks are willing, please hand those stories off to Rebecca Mazzarella. Elected officials read those stories and they help our case.
The Valeo's were one of thirty families to sit with Members of Congress and their staff to tell our story. Members of congress will always see me as a "suit," a passionate suit who won't stop talking about Children's Specialized Hospital, but still a suit. It is when they can meet a family in person and hear directly from them what the services that we provide mean to their lives, there is absolutely nothing more powerful. We found that again this week.After Heather told her story and I had gotten off my soap box about the injustice of the latest rules from the federal government that would eliminate Medicaid payments for any service where the child hadn't lost a skill but never had it in the first place, Congressman Ferguson offered his hand for Bella to shake. Being 5 she gave him a great big "squeezy" bear hug. And as long as she was up there, decided it would be a good time to play with his ears, because they were there for the taking. Being the father of 4 young children, Congressman Ferguson said he felt right at home. I guarantee you while he may have had 20 meetings that day, this is the one he will remember at the end of the day. Not my rants about CMS but Bella. And then when I go back the next time and ask for one more thing for the hospital, he will remind me of that wonderful day.
Advocacy is tough - it is not always about being right on the issues. It is about being right on the issues and touching someone's heart in the right way so they will stand up and fight for us. We are blessed with a Congressional delegation that will fight.Part of the way we stay present, is the press stories. Please don't forget if you have great things going on with a child and you think the folks are willing, please hand those stories off to Rebecca Mazzarella. Elected officials read those stories and they help our case.
1 comment:
It was truly an amazing experince to be part of the Family Advocacy Day on Capital Hill. I want all you to know that Amy and our hospital are well respected by congress. Heather and Bella were able to show our legislators how vital early medical and therapy services are in the lives of our children. Even though you all weren't there in person we carried you in our hearts and shared the great work that you do everyday.
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