Paige McCammon is a mother of two in Morrilton. She describes her oldest son, Kord, as a typical 3-year-old.
"He was a light in my life, just all around boy, in the dirt, into playtime, wrestling, all those things."
Her youngest son, Turner, is just 15 months younger than Cord. She says she and her husband noticed pretty quickly that something was different about Turner.
"It took me about 18 months of fighting, and he was finally 18 months old when we got the genetic results back."
Turner was diagnosed with an extraordinarily rare neurological disorder called DHDDS. McCammon says he is just the third person on the planet to have the variant of DHDDS that he has.
"So he is literally like a one in a billion little boy."
Turner experiences dozens of seizures a day and needs constant monitoring. One tool that could provide the McCammon family some needed support is an epilepsy camera for nighttime monitoring. One way their family could access that is through a program called Community and Employment Support waivers, or CES. But the problem is, even though McCammon's family qualifies for these waivers, the funding is not there right now. So she's on the waitlist.
"My child is number 2,084, and we're looking at about a decade-long waitlist."
In addition to providing medical equipment like that epilepsy monitor or mobility equipment or feeding tubes, CES waivers can also pay for staffing for in-home care for families who need someone from outside the household. John Newman is the executive director of Life Styles, a developmental disability support agency based in Fayetteville. He says one issue he has seen is simply a lack of information about the CES waivers for families who qualify for them.
"One problem that we have in the state of Arkansas is just information sharing. A lot of families do not know the time it takes to get a CES waiver. A lot of families don't know that a CES waiver exists that have children with developmental disabilities. And so one of the concerns that we have as providers is not only getting that information out, but a lot of families call us when they feel that they are in crisis. And so, sadly, a lot of our phone calls entail telling that family what the steps are, how long it's going to take, when they were looking for an answer that day."
That was McCammon's experience.
"When I found out about the waiver, I actually sadly found out of it in a very hard time in my life where I thought it was my lifeline, genuinely. And that's kind of where my advocacy started, because I knew that my family, this was a great need. This waiver was literally the make it or break it for our family. And that is the same way for so many other families out there as well."
She began to share on social media. There are posts dating back to April of McCammon sharing photos of Turner with captions like "Turner is not safe waiting on the CES waiver." She also shared stories of other families with similar experiences, being on a decade-long waitlist for necessary care. She wrote to Gov. Sarah Huckabee Sanders' office, explaining the need for urgent care, even telling her that institutional placement or foster care may need to be considered for Turner in order to receive the medical care he needs. McCammon described the response from the governor's office as cold and like a template response.
In early August, McCammon got to speak to a group of state legislators about Turner's experience and the CES waiver waitlist.
"I started out in the beginning more so coming to them on an emotional side, which was great. It got them to see the real story of it. But I noticed after a while, after talking to them, they were, most were kind. They were honest, though there wasn't much they could do. And they would ask me straight up, what is your solution?"
Nicole Clowney is a Democratic state representative for District 21, covering parts of Fayetteville. She says she first heard McCammon's story on social media, and was struck by the fact that her 2-year-old son could be waiting for help until he was 12.
"I'm the mom to a 12-year-old, and so when I hear stories like Paige's and her son is 2, I think about 10 years from being 2 as being 12, which is the age of my daughter. And I look at her and I think about the huge life that she has been able to lead, how important that will be to making her into an independent, successful adult. And my heart absolutely breaks for parents like Paige, who are looking at potentially waiting until their child is 12 to begin to receive the supports and resources that they will need to lead that same kind of life."
Clowney says when she thinks about a solution to the waitlist, it's not easy.
"But it is simple. The government's job is to take care of people. Our government is failing to take care of the people who need our help the most. Paige's story is heartbreaking, but as you said, it's not unique. One of the things that I worry about is that as a state government, sometimes we make choices that disproportionately negatively impact people that don't have the time and resources to fight for themselves.
"What is so extraordinary about Paige is that despite all that she is going through, she has been such a powerful voice who has said, this is not just about me and my family. This is about so many Arkansans who have no idea when they will be able to just give their kids or their loved ones the support that they need."
Moore: Do you have an idea at all, ballpark, how much it would cost to clear the waiver waitlist right now?
"I've heard figures anywhere between $30 million and $50 million. That obviously is a huge amount of money. But what I really want people to understand is that it is an amount of money that the state government does, in fact, have. Just to put it in perspective, again, we're hearing somewhere between $30 million and $50 million to clear that waitlist. We spend $380 million annually on school vouchers. In other words, on money that we know disproportionately is being spent on families who already sent their kids to private school to continue doing so. If we made better, more compassionate, smarter choices for Arkansans, this waitlist could be cleared immediately, and it could stay that way."
So what happens when you actually get off the waitlist and get to use your CES waiver? That is managed by the Provider-led Arkansas Shared Savings Entity program, or PASSE. Four different insurance companies take public money and use it to provide privatized managed care to the intellectually and developmentally disabled Arkansans who benefit from this service. Clowney says there is a lot of oversight and accountability for the recipients.
"There is not accountability for these PASSEs, for these middlemen who are theoretically responsible for coordinating care. That to me feels like a huge problem."
She says a program like PASSE and its failings should not be an excuse for the government to continue to reduce funding.
"That does not mean farm out the work of the government to a private insurance company who has no incentive to provide services for beneficiaries. Those insurance companies' business model are based on giving as few services as possible to the folks that it's meant to serve. That's not going to work. We can't use that then as evidence that the government doesn't work."
John Newman with Life Styles says the managed care program does not reduce waste, fraud and abuse for the Arkansas Department of Human Services.
"And what I feel like it's done for those of us who work at disability support agencies is we've created a lot of barriers to providing that support. When the old system, when it was straight from DHS to the provider, I felt like there were personal relationships. I felt like there was much more efficiency. We've had to spend a lot more money on administrative functions, and we used to be able to pass much more on to our staff and the folks that are receiving the service. And it just seems like we really struggle to get it right."
On Friday, Aug. 28, McCammon's husband, Seth, received a call from Gov. Sarah Huckabee Sanders' office. McCammon says the governor told her there is not an immediate fix to the CES waiver waitlist, and that ending the waitlist will require action during the next legislative session. But that's not the only option. Gov. Sanders has the authority to call an extraordinary session, something she has done three different times since taking office in 2023. Now, McCammon is leveraging her advocacy on social media to ask supporters to join her in directly asking Gov. Sanders and members of the state legislature to call for a special session to eliminate the current waitlist.
Clowney says she is fully in support of calling a special session.
"Absolutely. Whatever we can do to help these families, I am in support of. We have called special sessions. Over the last few years, we have called multiple special sessions to lower tax rates to provide very minimal tax relief to the average Arkansan. This would be so much more impactful and is certainly extraordinary to call for an extraordinary session."
Clowney says stories like McCammon's are impacting voters in a way she hasn't seen before.
"And that's because this is a defunding of critical state services that I've never seen before. You can talk all day long as a politician about loving families, about caring for rural Arkansans. They're not dumb. If moms see that your actions don't line up with your words, they're going to notice. If rural voters see their hospitals closing because Medicaid's been defunded, they will notice. These are things that will have an impact at the ballot box. The question is when. And for me, I hope it is sooner rather than later, because we need to get these families help as soon as possible."
While McCammon's son, Turner, was born with his disability, she reminds us that disability doesn't discriminate. She tells the story of a family friend named Terry Lee, who was hit by a drunk driver when he was just 16 years old and suffered a traumatic brain injury and paralysis from the crash.
"It's completely turned his family's life upside down, to the point where once little brother is now taking care of him, lifting him up out of bed every morning, helping Mom and Dad secure him into his harness. And that's what I want to remind people is that if you are supporting this fight, you aren't just supporting a far off, distant idea of disability. This could be your family tomorrow, and you and your family will be on the exact same waiting list as mine. And Terry Lee's."
Ozarks at Large sent several emails and called Gov. Sarah Huckabee Sanders' office for comment on this story and an invitation for an interview. Her spokesperson did not answer any of our messages.
Ozarks at Large transcripts are created on a rush deadline and edited for length and clarity. Copy editors utilize AI tools to review work. KUAF does not publish content created by AI. Please reach out to kuafinfo@uark.edu to report an issue. The audio version is the authoritative record of KUAF programming.
