Two years ago, I wrote a blogpost for Moms Rising about what I told Senators about my family’s health care needs. Two years later I need to speak again.

My husband and I have two children with Down syndrome – a 16-year-old son and a 14 year-old daughter. Our daughter is nonverbal. Neither of my children will ever be able to live alone and both will need constant care for the rest of their lives.

We are an average middle class family living in Arlington, VA just outside our nation’s capital.  Looking at us, you might not assume you were looking at a Medicaid family. But you are.  Let me explain.

Family walking.jpeg

Because my children are disabled they are eligible for a Medicaid waiver.  The best way to explain these waivers is that they enable folks who are disabled to live among their friends and family in the community rather than in an institution.

We are so fortunate to have a Medicaid waiver that pays for in-home services and helps us afford a caretaker for our kids during the day, which allows us to continue to work and contribute to the economy. We simply could not pay for the services our children need without it.

Either my husband or I would have to retire early to care for them if our Medicaid services were cut. If one of us had to leave the workforce to care for our children, the financial strain on our family would be enormous. It would devastate our retirement savings, and keep in mind we’re saving for four people, not just the two of us.

Right now in Virginia, there is a ten-year waiting list for the kind of waiver we have. 

The waivers and protections created for my family are under attack – from a Senate that wants to turn health care into block grants and a President who believes that institutions are preferable to our communities.  Earlier this year he lamented the dearth of institutions:

You know, if you look at the ‘60s and ‘70s, so many institutions were closed. The people were just allowed to go onto the streets….That was a terrible thing for our country…start building institutions again. We have to open up institutions.”

The President’s words are chilling.

Nothing is more important to my family’s future than to prevent Congress from cutting, gutting and turning Medicaid into block grants. We need to ensure that people with disabilities continue to have access to the services they need. My kids don’t have a voice of their own. I am here to speak for them, and to urge Congress to remember that they matter, they are an important part of the community – and their futures are on the line. Thank you.