When I'm advocating for health care, for disability rights, for funding for rare disease, I feel alive. I never thought advocacy would be for me until I had to jump into it to assist Rob and his own dreams. Its community. It's reassurance. It's projecting the better parts of me outward in service of others. This selflessness feels better to me than any of the other "selflessness" in which I've engaged as a caregiver.
Little Lobbyists strongly condemns the Administration's cruel and inhumane decision to terminate protections under the Medical Deferred Action program – a decision that, if left in place, will lead to the unnecessary deaths of vulnerable children and adults.
I never thought I’d get to write this to you, and so I’m not sure quite what to say. You start kindergarten tomorrow, your first day of school, and in a life filled with so many firsts we never expected, this one looms large.
We are Little Lobbyists, an organization of families across the country who have children with complex medical needs and disabilities. We seek to educate policymakers about our community so they can understand the real lives that are impacted by laws and policies they administer.
If the state prevails in Texas v. U.S, the ACA will be declared unconstitutional everywhere. No health organization agrees with an ACA repeal, and neither Texas nor congressional Republicans have a replacement plan. Our health care protections will simply be gone.
If my family had to flee a disaster today, could we expect any better than to have Robert separated from us, stripped of his medications and medical devices? Would other nations treat us any better than we’re treating their citizens now?"
Raising an Autistic child can change the very heart of who we are as parents, and as people. It’s a life that provides deep rewards, a broader perspective of the world, and an unspoken fellowship with other parents who can understand and connect with one another from across the aisles of Walmart – and hopefully across the aisles of political parties, as well.
We need everyone – even the talking heads, doctors, and so-called specialists – to recognize that people with disabilities are people and that “behaviors” are communication. We need them to be aware that there are insufficient resources to support people with disabilities in their homes and communities. We need everyone to understand that treating people to improve their health and well-being is NOT the same as shutting them away and shocking them into submission.
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.