Post Author
Emily Blevins
Communications Director
NC Child’s Parent Advisory Council (PAC) is an incredible group of parents and caregivers from across the state who have firsthand experience with community engagement, addressing healthcare accessibility, and advocating for policies that help improve child health outcomes. The parents and caregivers who make up the PAC each have incredible stories of experiences that not only shaped them as individuals, but inspired them to act and create powerful change in their communities. I got the pleasure of sitting down with our PAC member, Jenny Hobbs, to talk about her work as the co-founder of Advocates for Medically Fragile Kids NC and what resources are available for families of medically fragile children.
EMILY: Hi Jenny! Tell me a little about yourself and how you became an advocate for medically fragile children?
JENNY: I got involved in advocacy a few years ago because I have three medically fragile kids who are in the CAP/C Medicaid program. Back in 2016, I was reading the proposal for the new CAP/C waiver, which gets renewed every five years, and I did not like what I was reading and what was about to be implemented. It didn’t seem to me like parents and caretakers were considered in this new waiver, and it really spurred me to act.
I wrote a letter to one of my representatives and I shared it on social media—then I got people asking if they could share the letter further. What happened was that, from this action, I became the unofficial leader of a group of parents, and we started doing daily action items around this waiver. Myself and two other moms, Natalie Weaver and Elaine Nell, advocated and worked with support from organizations like NC Child, and we ended up in the right room and got this waiver changed. We even were able to implement other changes to the CAP/C waiver to help medically fragile kids and their families.
EMILY: For those who don’t know, can you explain what a CAP/C waiver is and how it supports medically fragile children?
JENNY: CAP/C is the abbreviation for the Community Alternatives Program for Children. It’s one of two home- and community-based programs offered by NC Medicaid that serves medically fragile children. To qualify for CAP/C, a child must be under 20 years old and meet a few different criteria—these criteria cover the type of condition or diagnosis they have, what kinds of specialized treatments or hospitalizations they may have experienced or currently require, and the degree of care or types of care resources they need. CAP/C helps provide support and care that will help enable children to remain in their homes with their loved ones.
The other program, Innovations, serves individuals of all ages who have an intellectual and/or developmental disability and need assistance with daily life activities. This program is a bit more complicated, and there’s currently a waiting list for Innovations waiver slots, but there’s no waiting list for CAP/C. The nonprofit I co-founded, Advocates for Medically Fragile Kids NC, has educational resources on CAP/C, Innovations, and more listed on our website.
EMILY: We hear a lot about the administrative side of Medicaid and programs like CAP/C, but what do these programs look like in practice for families?
JENNY: This is a really complex question because no two situations are going to be the same. Speaking for my own family, CAP/C was—and still is—tremendously helpful. When I was pregnant with my fourth child, my youngest, and two of my children were medically fragile. They had feeding tubes at that point, and they were then also put on ventilators. They needed to be switched to bolus feeds in the middle of the night, and one of them needed to be fed at 2 a.m. and the other needed to be fed an hour later. All night there would be alarms going off for feedings and for oxygen in the ventilators—and at six or seven months pregnant, I just wasn’t physically able to do it. My husband managed that care almost every night, but it just wasn’t sustainable for either of us. My husband almost lost his job because of it, and the pressure of everything put a real strain on our marriage. When our youngest was born, she had a lot of health issues from birth, and she also needed to be fed every two hours. It was just this insane cycle and it put a lot of stress on my family. We eventually were able to get both daytime and nighttime help because of CAP/C and I can’t even express to you how much of a relief it provided to my family.
What really keeps me up at night now is that families don’t know that this kind of support is out there. In my work now, I see families reaching out for help after doing the impossible for so many years—it’s heartbreaking the kind of desperate, painful, and unsustainable situations the families of medically fragile children may find themselves in. But that’s why education and advocacy around Medicaid and CAP/C is so important.
EMILY: Medicaid Expansion in North Carolina went into effect at the end of last year. With Medicaid Expansion came a couple of other administrative changes and we started hearing about something called the “unwinding.” Can you explain what this is and how this affected children on CAP/C waivers?
JENNY: The short answer is that during the pandemic public health emergency, the federal government expanded eligibility requirements for Medicaid, which allowed more people to participate in the program. When the public health emergency ended in 2023, states like North Carolina began the process to redetermine eligibility and disenroll individuals who were no longer qualified. This was the process known as “the unwinding.”
Now, because CAP/C eligibility is based on the income and assets of the child—and not the whole family—theoretically this redetermination process would not affect them. I say theoretically because we did see some instances where kids and their families lost care despite remaining eligible. Most of these disenrollments were ultimately because of some different technical issues on a couple of fronts.
There are still some forthcoming changes with Medicaid, outside of the unwinding and the redetermination process. In July, we’ll start to see the rollout of tailored plans.
On paper, the unwinding, the rollout of tailored plans, and CAP/C aren’t related, but there could be some peripheral issues with redetermination and tailored plans that could affect CAP/C families. If families experience any issues with CAP/C, they should contact their local DSS office. They can also reach out to Advocates for Medically Fragile Kids NC and we’ll do what we can to educate and connect them to the right folks who can assist them.
This is all to say: health policy like Medicaid can be very complex, and I know firsthand what it’s like to be caring for medically fragile children and to not have access to the information and resources you need. Medicaid expansion is a huge win for North Carolina’s children and families, but a lot of change is on the horizon. This is where that education and advocacy piece comes in.
EMILY: Where can the parents and caregivers of medically fragile kids learn more about changes to Medicaid and what resources are available to them and their families?
JENNY: Our organization, Advocates for Medically Fragile Kids NC, provides information about these programs, as well as other educational resources, on our website and on social media. Your county DSS office and the NC Medicaid Ombudsman can also give you more information about these programs.