Well, yesterday was the big meeting at the White House on the importance of Medicaid to children with special health care needs and their families and I have to say, the timing was interesting. As the other families and I were waiting for the start of our conversation with senior Administration officials, we were acutely aware that the President was meeting with Congressional leaders on the budget negotiations nearby – talk about proximity to power!
I wasn’t sure exactly what to expect prior to the meeting but I couldn’t have hoped for a better one. Attending from the White House were Kareem Dale (Special Assistant to the President on Disability Policy), Jon Carson (the director of the Office of Public Engagement) and Nancy-Anne DeParle (White House Deputy Chief of Staff), along with members of Kareem’s staff. With me, in my role as Meg the Mom, were Dianne Malley of New Jersey and her family and Rylin Rogers from Indiana and her daughter Laura. Folks familiar with the CatalystCentermight remember Rylin and her family being featured in Breaking the Link Between Special Health Care Needs and Financial Hardship. I was really honored to be included in this event along with two such passionate and articulate parent leaders.
Because it was such a small meeting, there was time for a real conversation between the families and the White House staff, which was a nice surprise – I thought perhaps the time would be too limited for dialogue. And speaking of surprises, while Brooke from Family Voices had said there would be ‘senior Administration officials’ at the meeting, I almost fell off my chair when Nancy Anne DeParle walked in —before becoming Deputy Chief of Staff, she was the director of the White House Office on Health Reform and the leader of the Administration’s work on the Affordable Care Act. She, Kareem and Jon asked us great questions in addition to listening intently to our stories of how Medicaid has made a difference to our children and families. I really felt they were interested, respectful of our experience and completely engaged in the conversation.
The day’s happy surprises didn’t end there. While we weren’t able to get a formal appointment with the Vice President’s staff, we were able to grab about 20 minutes with one of his policy analysts, who was incredibly gracious and also listened carefully and respectfully to the story of our experiences.
I don’t envy the folks we spoke with yesterday. These are tough times, for families AND for states, as each struggle with the ongoing effects of the Great Recession. Families need the safety net Medicaid provides more than ever, so their children can get access to health care they’d otherwise have to go without (getting sicker and more expensive to care for in the process) or pay out-of-pocket for, risking bankruptcy and financial ruin. States and the federal government are looking at the need to cut spending in the face of significant budget shortfalls and reduced revenue. Because of the two hats I wear, personally and professionally, I can sincerely appreciate both sides of this dilemma. I wish there was more emphasis on reducing waste and fraud, increasing quality through care coordination and clinical effectiveness through evidence-based practice. I believe we should be working together on making smarter investments with our public benefit dollars, instead of focusing only on reducing them. This is hard work, it doesn’t offer quick results and it’s not universally popular. But it’s the right thing to do.
I urge everyone reading this, regardless of your political views, to remember: Medicaid helps kids with special health care needs get and stay as healthy as possible, so they’re ready to learn in school and able to live at home and be fully integrated and valuable members of their families and communities. It helps their families afford the care they need and it helps our country as those families can then work and thrive and contribute. It’s what Medicaid has done for me and my family, and with your help and support I hope it will continue to work for millions of others long into the future.
The White House blog today features a story on the importance of Medicaid and mentions our meeting, together with similar meetings that took place with families associated with Moms Rising and The Arc. There was even a link to Laura Rodgers blog–how exciting!