Putting A Face on Medically Complex Kids

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The petite Chinese-American woman with a contemporary vibe carried a little girl in ponytails and sparkly sunglasses on her hip. Immediately dispelling any notion that this was just a darling mother-daughter duo passing through the crowd, she strode up the ramp of the stage and over to the microphone. Elena Hung was among the speakers at an August 26th Unite for Justice rally to halt the confirmation of President Trump’s second nominee to the Supreme Court. Hung’s voice rang out, “This is my daughter, Xiomara [ZEE-oh-mah-rah],” she began. “She spent the first five months of her life in the neonatal intensive care unit, uses a tracheostomy to breathe and a feeding tube for all her nutrition. But she is thriving today because of the quality health care she received. She is starting school in two weeks and she just celebrated her fourth birthday. Access to health care makes all of that possible.”

At a later date, Elena Hung tells me that she became an advocate accidentally, but the reality is that she felt compelled to speak truth to power. A friend of hers, Michelle Morrison, also has a child who uses a trach. The two women had been following yet another move by the majority party in the House of Representatives to repeal or dismantle parts of the Affordable Care Act—as it had more than fifty times since its passing in October 2009. They talked about wanting to do more to draw attention to kids like theirs, save the ACA protections that help their children survive and thrive, and decided to share their health care stories with members of Congress. After all, before Xiomara was born, Hung had not seen a lot of kids with trachs, ventilators, or other life support devices. Like most people, she was not aware of the opportunities for a good quality of life that medical advances have brought. The goal was simple:  put a face on health care before policy makers on Capitol Hill. Focus on this child’s happy personality.  She likes to play, she goes to school, she goes to the playground. Yes, she happens to be using a ventilator, and yes, you can see her mom feed her through a feeding tube. But first and foremost, she’s a kid. A kid who deserves a shot at childhood.

Hung 4th BirthdayOn their chosen lobby day, June 20, 2017, families with their children showed up in DC. Those who could not make the trip sent in the stories of their struggles in raising kids with complex medical needs or disabilities. More than 100 personal stories were collected in one week. Parents and kids dropped by the offices of their legislators, speaking about the importance of the ACA and leaving their stories to read. There were too many stories to drop off in one day and too many offices to meet, so they came back the next day, and the next week.  And the stories kept coming in.

At the rally, Hung continued: “There are thousands of medically complex kids just like Xiomara right here in Pennsylvania, and there are millions of kids just like her across the country. For over a year, our kids’ right to health care has been under attack by our government. First by Congress in their attempts to repeal the Affordable Care Act. Then by the Administration in gutting the ACA, creating junk health care plans that don’t cover much, and filing a lawsuit to declare protections for pre-existing conditions unconstitutional.”

Connecting to the rally’s purpose in explaining what’s at stake should Trump’s nominee win, Ms. Hung explained, “And now, our rights are threatened once again by the nomination of Judge Kavanaugh; a judge with a hostile record against those protected by the ACA as well as millions of Americans with disabilities. His statements on the ACA strongly indicate that if he’s given the chance to strike down parts of the law that keeps millions of Americans alive and out of bankruptcy, he will.”

Hung claims that she and Morrison co-founded Little Lobbyists “accidentally.” In actuality, she seized upon an opportunity for scaling up the advocacy efforts with branding. That came about when Laura Hatcher, a mother of two children–both with complex medical needs–wanted to be involved but couldn’t leave her job to join them on visits in the halls of Congress. However, as a graphic designer, she knew she could make a contribution to the group’s efforts, so she created a logo, which essentially branded the organization, Little Lobbyists, and helped them get some more recognition.

Little LobbyistsFound on the web at littlelobbyists.org, the grass roots, peer-run effort grew. Sharing their stories provided support and empowered more and more families with children who have complex medical needs to speak up. Soon, they partnered with other organizations that fight for health care access and hold elected officials accountable for their votes, such as Health Care Voter. And they fought against the tax bill last year. “Upon closer look, we saw that the tax cuts would be primarily going to the wealthy and to corporations,” Hung explains. “And the funding for those cuts would be coming out of Medicaid, among other life-saving programs.”

Medicaid pays for the trained caregiver who goes with Xiomara to a pre-K special ed program in a public school, thereby funding the physical therapy, occupational therapy, and speech therapy for the little girl. As a mother who relies on the protections of the ACA and on Medicaid, Hung knows all too well that rolling back the ACA or making cuts to Medicaid would be devastating and put not just her child, but a lot of kids’ lives in jeopardy.

The Little Lobbyists advocate for kids with complex medical needs in three areas of policy advancements. First, they insist on quality, affordable health care for their children. Second, they want free appropriate public education tailored to their children’s individual needs, with accessible classrooms, playgrounds, transportation and communication devices, as stated (but not always executed) in the Individuals with Disabilities Education Act. Third, they seek community inclusion, so that their children may enjoy life in their own neighborhoods, rather than be shuttered in institutions or nursing homes as was so often the case decades ago. Expanding the Americans with Disabilities Act and passing the Disability Integration Act would help accomplish that.

At the rally, Xiomara seemed accustomed to the attention, and aware of all the family support; her dad and brother were in the crowd. Hung spoke passionately about what’s at stake with President Trump’s nominee: “A Supreme Court appointment isn’t like our elected officials, where we get the chance to vote them out every two, four, or six years.  If confirmed, Judge Kavanaugh could be on the bench for up to 40 years. His opinions will affect my daughter Xiomara, will affect all of us, for generations. Looking at my daughter, I know I cannot take that risk. Can you? Can we afford a Supreme Court justice who won’t respect the rights of people with disabilities? Can we afford a Supreme Court justice who will threaten the health care of 130 million Americans with pre-existing conditions? Is that what is best for America?”

Elena Hung ends by urging everyone, “Keep fighting, my friends.  Say NO to Kavanaugh. And this November, join me and the Little Lobbyists and pledge to be a Health Care Voter — support and vote for candidates who will protect our care.”

Child’s World NEWS columnists are free to voice their own political opinions. They are not necessarily the opinions of the editors of CWN.



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