Video: Medicaid and Children with Special Health Care Needs

Transcript of video (PDF)

As Communication Specialist for the Health & Disability Working Group, I work with Meg Comeau, director of the Catalyst Center. When Meg came home from her meeting at the White House last week, I was struck by the stories she told of the other families at the meeting. For someone like me, who has had no experience with Medicaid, it can be difficult to understand just how crucial Medicaid is to these families, and how financially draining it can be to raise a child with special health care needs. I decided to interview the families about the meeting, as a personal project outside of my official role with the Catalyst Center. I put together an audio slideshow of what they told me, so others can hear their experiences firsthand. I have posted the results on Youtube; you can view it by clicking on the image above.

One of the people I spoke with was Laura Rodgers, an 11-year-old girl who attended the White House meeting. Laura told White House officals what it’s like for her and her brother to live with with mitochondrial disorder and why Medicaid is important to her and Matthew. But attending a White House meeting is not Laura’s only accomplishment: as a second grader, Laura set herself the goal of reading all the Newbury medal winners before she got to middle school (5th grade). She did it, too, with months to spare, and you can see what she thought of these books on her blog, Laura’s Life. What does that have to do with Medicaid? Listen to Laura talking about the White House meeting to find out.

More information about the meeting is also available on our White House Meeting page.

Edi Ablavsky

Off to the White House

Welcome to the new blog of the Catalyst Center, the Spark!  We hope you’ll find this an engaging and accessible blog on topics important to health care financing policy for children and youth with special health care needs, written by your friendly neighborhood policy wonks at the Catalyst Center.

Meg Comeau and daughter Sarah on a recent vacation.

This week finds the Catalyst Center crew especially busy preparing for an important event on Thursday, July 7^th.  Thanks to our friends and colleagues at Family Voices, I’ve been invited to wear my “Meg the Mom” hat along with two other parents of children with special health care needs at a meeting with Kareem Dale, special advisor to the President on disability issues and senior administration officials at the White House.  The purpose of the meeting is to share what our children’s enrollment in Medicaid has meant to their health and well-being and to our families’ financial stability.  Very exciting!

Also a little anxiety-producing…..I’m feeling keenly the responsibility of representing with our modest story  the millions of kids with special health care needs who depend on Medicaid for quality-of-life enhancing and sometimes even life-sustaining care and supports.  These are tough times, for families AND for states, as each struggles 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 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.

I can appreciate both sides of this dilemma and I wish I had an easy answer to solving it that works equally well for everyone.  Instead, what I hope to offer on Thursday by telling our story is what access to Medicaid means to everyday kids and families; how it helps kids with disabilities and 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 a part of their families and communities.  In telling our story, I would like the folks at the meeting to be able to picture the real people behind the budget numbers and statistics and to understand the consequences of what significant changes in Medicaid would mean to them.  If I can accomplish that, I’ll have done my job – at least for that day.

Meg

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