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By Yen Duong

“Oh sorry, that’s grape juice,” Stacy Staggs apologized when her pigtailed 5-year-old daughter, Sara Bean, wiped her small, sticky hands on the back of a visitor’s shirt. Sara was taking a snack break from playing with her twin sister, Emma, who was messing around on an electronic tablet.

In many ways, the Staggs look like any other family of four in a suburban Charlotte home littered with toys.

But Emma and Sara aren’t like other children. Sara chatters with the halting cadence of a toddler half her age due to neurological issues and developmental delays. Emma’s tablet is a medical communication device, as her vocal cords are fused shut and she cannot speak. For 18 hours a day, a nurse watches Emma to make sure she doesn’t choke on any mucus in her tracheostomy tube, pull out her feeding tube, or strangle herself in those cords while sleeping.

Five-year-old Emma Staggs uses this adaptive communication device to ‘speak’ by tapping tiles to emit phrases such as “I need suction” or “I love you.” Photo credit: Yen Duong

Medically fragile children such as Emma and Sara may have the deck stacked against them, but parents like Staggs act as their fierce advocates.

“It makes me batty when people [say:] ‘Why should I pay for your expensive health care?’” Staggs said. “My daughters’ pre-existing conditions are congenital; it wasn’t a lifestyle choice.

“And even if it was, that doesn’t make that person less worthy of care. It’s a weird conversation to be having these days with people about the value of a life and the requirements of civil society.”

Little Lobbyists

Whenever a health care policy event happens around North Carolina, Staggs or another parent of a medically fragile child is often there. Just this summer, Staggs spoke at Rep. Alma Adams’s “Healthcare for All” town hall, at an ACA press conference with NC Attorney General Josh Stein, and a “Protect Our Care” national tour stop in Charlotte.

Staggs runs the 100-member North Carolina chapter of Little Lobbyists, a national nonpartisan group formed in 2017 in response to threats to dismantle the Affordable Care Act.

Staggs didn’t expect to become an activist, but throughout the 2016 election season, Staggs nervously watched politicians discussing repealing the ACA.

Advocate Stacy Staggs (center) spoke earlier this summer at a press conference with NC Attorney General Josh Stein (left). Photo credit: Josh Stein.

“For the girls, the importance of the Affordable Care Act is removing the lifetime coverage limit, which they have both met already; they’re only 5 years old,” Staggs said. “If we were to return to a time where coverage limits were reinstated, they would both be uninsurable… My husband and I would work ourselves into financial straits, file medical bankruptcy, lose all of our assets, struggle for as long as we could.

“And eventually, we would come to an endpoint of one or more of us losing our fight.”

In 2017, Staggs learned about Little Lobbyists when the founding parents in Washington, D.C. ferried their medically fragile children to the Capitol to show lawmakers the human cost of repealing the ACA.

“I remember asking [the founder], ‘How in the heck did you get meetings with senators?’” Staggs recalled.  “And she goes, ‘Well, the doors aren’t locked. You can just walk in; it’s a public building.’ …And that’s really what they’ve been doing the whole time.”

This May, Staggs started the North Carolina chapter of Little Lobbyists and oversaw the openings of five other state chapters. In July, she headed to D.C. for Little Lobbyists’ second birthday party, where she met senators and representatives including Speaker of the House Nancy Pelosi.

In their two years, Little Lobbyists have advocated for SNAP benefits (also known as food stamps), preserving the ACA and protecting immigrant health. They’ve also lobbied against the “public charge” rules limiting immigrants who might require social services and against short-term limited duration health plans.

Five-year old Emma Staggs still sleeps in a crib and requires constant supervision while sleeping, to keep her safe from the many tubes that keep her alive. Photo credit: Yen Duong.

Staggs said Little Lobbyists ultimately wants a chapter in every state, with families from every congressional district to lobby their representatives. This summer, her chapter co-signed an advocacy letter to North Carolina’s representatives.

Advocates for Medically Fragile Kids and Medicaid CAP/C

While Little Lobbyists focuses on national issues, nonprofit Advocates for Medically Fragile Kids NC concentrates on North Carolina’s Medicaid CAP/C program.

Medicaid Community Alternatives Program for Children, or CAP/C, is a state program that supports families keeping their children at home rather than in hospitals or institutions. On top of the medical care, equipment and therapies supported by Medicaid, CAP/C families receive in-home nursing care, respite care, diapers, and caregiver training and education based on their individual needs.

Families qualify based on their child’s income, not family income, so most of the program’s 2,653 families receive CAP/C benefits for free, said Dave Richard, who directs the state’s Medicaid system. Since before 2010, the waiver has had space for 4,000 families, but the number of used slots has only increased by 3 or 4 percent each year. The federal-state partnership cost the state about $62 million last year—around two-thirds of the costs are covered by the federal government, with the state picking up the remaining third.

“We all at Medicaid recognize that if you have a child that was medically fragile, and you’re trying to do this work every day to keep that son or daughter at home, it’s hard work,” Richard said. “No matter how much support people get from the state to do this work, it is still difficult for families.”

“One thing that we are constantly amazed at is their ability to not only take care of their sons or daughters but also take up this advocacy charge,” he continued. “From Medicaid’s standpoint, […understanding] how the beneficiaries are impacted by the policies that we have in place is critical for us to run a quality program.”

For the past few years, three parents have served on a volunteer CAP/C Advisory Board to help guide the program. That advisory board formed after Jenny Hobbs, a Winston-Salem mother of four who worked in a case management agency, noticed upcoming changes to the CAP/C program in 2016.

“I would submit my public comments and hopes that somebody was paying attention, and the next version would come out, and it was even worse than the previous version,” Hobbs recalled. “I got really frustrated that all of our concerns were falling on deaf ears, and so [that] kind of led to a little bit of a revolt.”

The Hobbs children (l to r) Madison, Melanie, Michael and Meredith. All but Melanie have mitochrondrial disorder, a genetic disease which can cause muscle wasting, fatigue pain and a host of other problems. The three who have the disease each sleep on a ventilator at night and require nursing care. Photo courtesy: Jenny Hobbs

Hobbs shared a letter to her representative in a Facebook group for parents of medically fragile kids, and the advocacy group took off. Hobbs and her two co-founders sent out daily action items to their group, such as emailing the state’s Joint Legislative Oversight Committee for Health and Human Services, messaging the executive team of DHHS and Medicaid, or calling Disability Rights North Carolina to endorse their group.

“The intake coordinator I talked to that day nicknamed us ‘The CAP/C mamas.’ … She got over 20 calls in 30 minutes, and so Disability Rights got on board,” Hobbs said. “There was this group out there of parents that care deeply but didn’t know how to get involved, and they just needed a little bit of prompting to let their passion have a voice.”

Advocates for Medically Fragile Kids NC pushed against CAP/C falling into Medicaid managed care during the upcoming transformation, and Richard confirmed that CAP/C and other more complex Medicaid programs will not switch to managed care.

Read more: A 2016 story about the beginnings of Advocates for Medically Fragile Kids, a 2016 story about a CAP/C waitlist, a 2017 story about AMFK advocacy

Parent advocates and getting support

Little Lobbyists and Advocates for Medically Fragile Kids are part of a long tradition of parents advocating for their children with medical needs. Every state but Tennessee runs a state-federal program similar to CAP/C, also called Katie Beckett programs.

By 1981, Katie Beckett had been hospitalized to use a ventilator for most of her three years of life, although her parents wanted to keep her home. President Ronald Reagan used Beckett’s case to reform Medicaid so that children could stay home rather than in costlier institutions.

There’s a long history of women and children advocates. In this 1912 suffrage parade photo, one woman advocate pushes her child in a stroller. Photo credit: Library of Congress.

For many parents today, learning about Medicaid CAP/C can be overwhelming, but going without the support is worse.

When Charlotte mom Becca Smoot had an emergency C-section at 25 weeks of pregnancy, she assumed that her health insurance from her finance job would cover the stay.

“It was very weird when they told me to apply for Medicaid because I was like, ‘No, I’ve got good insurance,’” Smoot recalled. “I would have lost my house if it wasn’t for having Medicaid pick up the rest of the NICU bill.”

Smoot’s daughter received CAP/C approval after her diagnosis of cerebral palsy at 2 years old, which means single mom Smoot paid for certified nursing assistant-level help for two years without governmental support, going into the red each month. Smoot now relies on CAP/C Facebook groups and other support networks to navigate her daughter’s care and figure out how to cover surgeries or adaptive technology.

While the three families in this article all benefit from CAP/C, Hobbs said the program is still not enough.

“It breaks my heart when I’m going through the questions and I say the way the policy is written right now, it will not help this family,” Hobbs said in her role as a CAP/C referral manager. “It kills me because there’s nothing else. This is supposed to be the safety net, and it’s not big enough.”

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Yen Duong

Yen Duong covers health care in Charlotte and the southern Piedmont for North Carolina Health News.