Print Friendly and PDFPrinter Friendly Version

Friday, November 11, 2011

How Medicaid protects Javi: One mother's story


An earlier version of this column appeared in The (Durham, N.C.) Herald-Sun 07.17.11 - 08:23 pm.

 This summer, I traveled to Washington, D.C., with my 17-year-old son, Javi. I've been there many times before, but this was his first visit.


We started our trip with an evening trolley tour of our capital's landmarks. But we didn't go to D.C. as tourists. Along with other people from the American Association of People with Disabilities and United Cerebral Palsy, Javi and I went to the White House and Congress to make our voices heard in a policy discussion that affects our lives: the future of Medicaid.

Our nation's leaders were already locked in heated debt negotiations involving trillions of dollars. Now, the so-called “super committee” is deciding our fate. It's hard to get your head around numbers that big, but the important thing to know is that behind those huge numbers, there are people. People like me and you.

For my family and many other working American families, deep cuts to Medicaid would be devastating. I shared my story so that our nation's leaders and my fellow Americans can see the face of Medicaid and the human cost of slashing it.

I am a single mother who works full time while raising Javi. He has autism and Ehlers-Danlos Syndrome (EDS), a connective-tissue disease that affects his joints, gastric system, and other physical functions and causes him great pain.

Javi is so much more than his disabilities: he's a person with a great deal to offer. Nonetheless, his disabilities shape our family's life at every level. To keep our family running, it takes both hard work and the resources Medicaid provides.

Javi cannot be at home alone. Medicaid provides someone to be with him while I am at work. If we didn't have that resource, I could not work to support our family as I do now. I would either need public assistance, or Javi would be forced to live in an institutionalized setting -- which is no life for him, and would also cost taxpayers far more than the services he uses now.

My son is also getting training in life skills that will help him to be as productive and independent as possible. I will not always be here. The more Javi learns now, the less dependent he will be on others in the future. He has learned so much and come a lot farther than people ever thought he would.

Finally, Medicaid provides medical care for Javi's Ehlers-Danlos Syndrome. As a mother, it's difficult to describe the thought of Javi facing this painful and debilitating disease without access to quality health care. I have to fight to prevent that.

So when I visited the White House and Congress, I spoke as a mom. I walked into those same buildings we saw on the trolley tour and spoke my mind about the negotiations that still dominate the news today. When I put it that way, it sounds like an intimidating task.

Then again, I've been told more than once that I don't seem to have a problem asserting myself, especially when it comes to Javi. I have advocated for him his entire life so that he can have the best life possible.

Every parent understands what that means. When it comes to our children, quitting is never an option.

Javi has never quit either, and he never will. America shouldn't give up on Javi.

Although he faces extraordinary challenges, at the end of the day he is someone who is trying to live his life, like anyone else. This is about his life, too, and he went to the White House and Capitol Hill to fight for it, as he always has. Together, Javi and I showed the human face of Medicaid and explained what is really at stake [click here to join me with your own story].

Medicaid isn't about us taking something from others. It's about having the tools we need to live up to our responsibilities to our families and to society. Medicaid makes it possible for me to work, pay taxes, and support myself and my son. It gives Javi the tools to go as far as his hard work will take him.

In America, we believe in opportunity. We don't stop people from living up to their potential or supporting their families. Sacrificing Medicaid in the name of deficit reduction would mean sacrificing real people's lives and devaluing our hard work. America cannot go down that road.