This Sunday, I’ll be celebrating Father’s Day as a dad for the eighth time. My first one was pretty easy albeit uneventful, “uneventful” later becoming an eternal goal in our lives. My daughter Penny was born in the spring of 2011, and for the first three months of her life, she exhibited all the signs of a healthy baby girl.  

That’s when she started doing this thing with her arm. That’s what we called it, an odd, repetitive motion. We brought her to her pediatrician, explaining that she kept doing “this thing.” He observed her, and within a minute, Penny did it again. He instantly instructed us to take her to the emergency room at Cornell Medical Center, explaining that she was having partial seizures. Within 48 hours I no longer had a healthy baby girl. I had a daughter with Aicardi Syndrome; a severe developmental disability that only impacts girls. It includes epilepsy, intellectual disability (severe in Penny’s case), physical disabilities (also severe with Penny), and communicative difficulties. Penny cannot talk or willfully communicate aside from a whine when she’s unhappy, a squeal when she’s happy, and occasionally tapping the table when she wants an object.  

It’s still remarkable to reflect on how the life that I had envisioned for myself and for Penny had been obliterated and replaced with a different one, one far scarier and more uncertain, in the space of a couple of days. Even scarier was how isolating it felt to have a daughter with an illness so rare you could potentially go years without meeting another person affected. My first big break was finding a support group for parents of Aicardi children online. The feeling of belonging and support got me through those first months. It wasn’t only people helping each other and it wasn’t just the moral support, both of which were huge. It was the pictures I saw and stories I read about families having fun with their daughters – the girls getting to enjoy beautiful experiences in their communities, out in nature, on road trips, and in school. I read dispatches from normal life, people simply talking about “normal” stuff, like going to the movies and out to dinner.  

Something that was rare in the group (though certainly not absent) were posts by dads. I don’t know exactly why dads are less likely to participate in such groups – if it’s simply not one’s thing, great – but I’ve spoken to some dads who claim they don’t feel it’s meant for them. They feel intimidated by how overwhelmingly female such groups sometimes are, or are embarrassed. It is not, however, because they are less interested. I have come to know some of the most spectacular special needs dads that I could ever meet. I’ve known dads to build entire rooms to accommodate their kids, convert a van themselves, carry a 60-pound daughter miles through the hilly woods because she loves it, change jobs and move the family cross country for better services for their children, and create enough adaptable devices (and Halloween costumes!) to earn an engineering degree.  

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. I don’t know if I would have even thought to do all I do with my kids without your inspiration. I thank you for that. And thank you from the entire special needs community for doing more than most people even know is possible.   

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If you are the parent or guardian of a child with complex medical needs and/or disabilities, share your story with us here. If you would like to learn more and stay in touch, connect with us here. If you would like to donate to help us continue our work, please click here.

Thank you!

Below is a copy of the letter that we have been delivering to U.S. Senators regarding our opposition to the Graham-Cassidy bill:

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September 18, 2017

Dear Senator,

Little Lobbyists is an organization of families with one thing in common: we all have medically complex children requiring significant medical care.  Our mission is to advocate on behalf of the millions of such children across the country to ensure that their stories are heard and their access to quality health care is protected.  We have visited your office previously and hand-delivered the stories of medically complex children in your state whose health and future would have been jeopardized by the legislation under consideration at the time.

We write again because the pending Cassidy-Graham health care bill poses similar danger to the millions of medically complex children in this country, thousands of whom live in your state.  We ask that you stand up to protect our children, and demand that Congress do the same.   

Our current health care laws can and must be improved, about this there is no debate.  However, the Cassidy-Graham bill departs from recent good faith, bipartisan efforts and attempts a massive upheaval of our health care system without input from policy experts or those who would be most affected by its provisions.  In particular, the Cassidy-Graham bill undermines three protections in current law that are vital to the health and well-being of medically complex children and their families:  

• Decreased Medicaid funding through “per capita caps” and “block grants”. Private insurance frequently does not cover home/community-based care (such as private duty nursing) and therapeutic care. Medicaid fills this gap, which allows medically complex children not only to live at home, but to thrive. Cassidy-Graham’s upheaval of Medicaid will cut billions of dollars nationally from the program relative to current law, with no guarantees that the funds must be spent on the same population. Under such funding restrictions, optional Medicaid programs, such as the Katie Beckett Medicaid waiver program created by Ronald Reagan to help families care for their medically complex children at home, will likely be among the first eliminated. In short, under Cassidy-Graham, the vital safety net that Medicaid provides our children is slowly pulled away, with families like ours left to worry constantly whether it will be there when they need it.

• Eliminating the ban on annual/lifetime limits. Many of our children accumulated millions of dollars in medical bills in their infancy before they ever left the hospital. Under the ACA, insurance companies were prohibited from kicking our children off of insurance plans when their care reached a certain dollar amount. Cassidy-Graham would allow states the ability to waive these protections. This means that parents across the nation sitting bedside in Neonatal Intensive Care Units will once again have to worry not only about whether their child will survive, but also whether the hospital stay will leave them bankrupt.

• Eliminating the ACA’s pre-existing condition protections. Medically complex children are frequently born with multiple pre-existing conditions. Protections against discrimination on the basis of these conditions give us the security that our children will not one day be denied affordable insurance because of conditions they were born with. That security is stolen by the Graham-Cassidy bill, giving states broad authority to waive these protections. This is contrary to the Republican Party’s own platform, which provides that “individuals with preexisting conditions who maintain continuous coverage should be protected from discrimination.”

We have heard politicians over the past few days tell us that the Cassidy-Graham bill will increase “flexibility” and “choice” for Americans.  That is flatly untrue for our families.  Rather, the bill’s provisions will fundamentally disrupt the safety net that our families depend on, likely leaving us only one unthinkable choice: incur debt far beyond our means, or forego medical care that will keep our children alive and able to achieve their God-given potential.

As we said at the outset, our nation’s health care laws can and must be fixed.  But it is unjust, immoral, and contrary to any reasonable meaning of “pro-life” to pass a health care law that makes it harder for medically complex children to access the care they need to survive and thrive.  Our children have done nothing wrong.  They do not lack personal responsibility; indeed, they show more strength, bravery, and resiliency in a single hospital visit than many people do in their entire lives.  They are just kids who, through no fault of their own, need a little help.  

You can help them now.  Stand with our children.  Hear their stories.  Work with us to ensure their access to health care is not diminished.  We will make ourselves available anytime of any day to discuss our concerns with you in person, and to assist in any way we can toward the goal of a health care system that works better for all Americans. 

Sincerely,

Elena Hung
Michelle Morrison
Co-Founders, Little Lobbyists

Austin Carrigg, Anna Kruck Corbin, Laura LeBrun Hatcher, Ben Zeitler
Steering Committee, Little Lobbyists