When you are the mother of a child with severe disabilities you can’t help but worry about what’s going to happen to her once you are gone. When she is your only child and when your partner is the only likely family member who can survive you, it feels perilous. You really hope your society has a good social safety net.

That is why I am sharing my story again.

Right now, Congress is discussing ways to come to an agreement on balancing the budget; whether to end the Bush tax cuts for the wealthiest 2% of Americans and whether or not to protect Medicaid, Medicare and Social Security for families like mine.

My daughter, Freya, is 19 years old and has severe intellectual disabilities and moderate physical disabilities. She needs assistance with nearly every aspect of her life, from changing her diapers to eating to getting around the community. Helping her meet her needs has been transformative and enlightening, and also deeply challenging. Medicaid has helped immensely.

I had my daughter when I was 20 years old, a sophomore in college. As a single mother of a profoundly disabled child, I completed my undergraduate degree and a Ph. D. in physics. I am proud of that, and I could not have done that without Medicaid to provide for my daughter’s medical expenses.

Freya was on Medicaid shortly after she was born, because no insurance company would sell a policy to a newborn baby, and she was not eligible to join my policy. At 6 months old, I was able to purchase her a private policy that I have paid for out of my pocket for the last 19 years. But she stayed on Medicaid, thank goodness, which paid for the things that the private insurance didn’t. I had no idea how much that would be until she needed open-heart surgery just a few weeks after her private insurance coverage began. There were so many co-pays and deductibles and non-preferred provider charges, we really could not have managed them.

Medicaid's vulnerability to cuts increases my concern that Freya won't continue to get the critical health coverage she needs. And what is more, should something happen to my partner or me, there will be no one to pay for private insurance for her.

It's not right that moms like me have to endure another round of nightmares and losing sleep thinking about what can happen to our child. For those of you who are reading this, please do not allow our leaders to balance the budget on the backs of the disabled. Medicaid is the main source of care for people like my daughter and seniors. She and others like her are deserving of a long and dignified life.

Thank you for your support!

What you can do to tell Congress to not to balance the budget on the backs of moms and families:

1. Share your story of how Medicaid has helped your family - http://www.momsrising.org/member_stories/topic/untitled_679

2. Go a step further and deliver stories of impacted families at the office of your local member of Congress -  http://www.momsrising.org/events/create_event/0/0