I have to confess that a year ago, I had no idea who my State Representative was. We all start somewhere. I never thought I would be a health care expert meeting with legislators in our state Capitol, but now I am. Because I have to be.
I am writing this in part as an invitation to other parents who may, like me, be in denial about their child’s disability. It’s time to take a good look at why we fear this word. Ending society’s stigma against our children with disabilities must start in our own hearts.
Little Lobbyists believe that health care is a human right. We also believe all health care policy in the United States, especially policies designed to create a system of universal health care, must include appropriate coverage for the health care of people with complex medical needs and protections for the civil rights of people with disabilities. By doing so, legislators can finally ensure that every American has access to health care. All must mean ALL.
Right now, I’m worried about the nomination of Chad Readler to the Sixth Circuit Court of Appeals. He wants to dismantle the ACA and a vote to confirm him is a vote against my family and millions of families like mine.
It is important for kids and youth to share their stories and advocate on Capitol Hill. Legislators need to hear our stories and understand the struggles we go through and the insurance coverage issues our families face. If our legislators don't know about our insurance issues, they will not be able to help us.
Crowd-funding for my son’s medical needs it is not sustainable. The single biggest thing you can do to help families like mine, is VOTE for candidates who will protect access to affordable health care for everyone who needs it.
There’s been a lot written about how special needs dads can be overlooked or are more likely to be silent about their child, so I want to dedicate this Father’s Day to all the special needs dads who are pouring their heart into their kids.
Parents and family members of children with complex medical needs from across the country have sent us their stories. Stories of faith and hope, anger and tragedy. Stories that are written by parents in between daytime therapies and appointments, and those magic quiet hours between midnight tube feeds and 2am vent alarms.