By Barbara Munoz, Voices for Utah Children

I have had the great privilege over the last several weeks of interviewing families throughout the state of Utah who have benefited from CHIP or Medicaid. There really is no better way of advocating for children’s health than through the telling of personal stories of real families affected by these programs.  Their stories have reinforced for me a point that may be obvious to many Say Ahhh! readers, but clearly bears repeating:  Parents who use Medicaid and CHIP to access health care for their children should be proud that they are acting responsibly to keep their kids healthy.

In collaboration with our state Department of Health, we sent out nearly 40,000 flyers throughout the month of March to CHIP and Medicaid enrollees inviting them to visit our website or Facebook page and share their stories on the simple form we created. There have been both heartwarming and sometimes tragic stories. I’ve spoken with single parents who stated that they would be bankrupt or buried by debt if not for Medicaid. A couple with a special needs child told me they nearly exhausted their lifetime limit on benefits (a problem that goes away with the ACA) by the time their son was only two. Despite having a good job as a human resources director, the mother felt she should quit her job so they could have guaranteed coverage and the peace of mind that came with Medicaid coverage.

Parents have used phrases such as “Medicaid saved my child’s life” or “I could not afford diabetes medications and testing supplies without CHIP.” While I also expected complaints about lack of providers or the difficult process of applying, by and large, complaints were minor and few in number. Parents raved about the value of these programs. However, there was one disturbing trend – the expression of shame.

Out of thousands of flyers that were sent out, only twenty families have responded. A few indicated immediately they were unwilling to share their story publicly. Only a handful were willing to talk about the value of these programs to the media if asked. Most are willing to share their story at some level, but only after reassurances that their information will be protected should they choose not to use their name in the publication we plan to release this August.  These are parents who have taken every measure possible to protect the health and happiness of their children, and yet they are still reluctant to speak out publicly.

One of the brave parents I spoke with agreed to have her story featured on one of our local newscasts. The story focused on the oral arguments being heard by the Supreme Court and the reporter covering the story wanted to show a real family who is benefitting from Medicaid and who feared the possible ramifications of the Supreme Court’s ruling. The lovely single mother and her adorable, healthy, two-year old were featured prominently in the report which was also featured on the station’s website. After viewing the video on the website, I made the mistake of reading the comments. Not a single comment supported the mother, her child, or the program keeping her child healthy.  As child health advocates, we often speak out to stress the value and success of Medicaid and CHIP and I’ve assured the parents I speak to that they are doing the right thing by utilizing the health care available to their children.  Still, I wish there was more I could do to remove the possible backlash they may face from neighbors, co-workers, friends, and church members for simply trying to keep their children healthy.

It is deeply disappointing that they risk ridicule for doing the right thing for their kids. How do I combat this? By continuing to shout from the rooftops at any opportunity that providing health care to children is the right thing to do. These parents should feel nothing but pride for taking care of their kids.