Laura Hellinga, a single mother from Highfill, moved to a new home two years ago to better accommodate her 15-year-old daughter, Landry, who has a rare joint disorder and uses a motorized wheelchair. Despite her efforts, accessing essential equipment like a ceiling track lift that ensures her daughter's safety has become a challenge.
Hellinga’s daughter is insured through the Provider-Led Arkansas Shared Savings Entity (PASSE), a Medicaid-managed care program for Arkansans with complex disabilities. Moving the ceiling lift system from their old house to the new one wasn’t covered under PASSE, and to regain this vital equipment, Landry would need a Medicaid waiver that places her on a waitlist with over 8,200 other Arkansans. Hellinga believes it could take years before they receive approval.
The Department of Human Services confirmed that the PASSE program, established in 2018, serves over 46,000 Arkansans as of July 1. DHS spokesperson Gavin Lesnick stated that the state’s Community and Employment Services (CES) Medicaid waiver currently has a waitlist of 2,268, with the longest wait recorded at three years.
Families across Arkansas have faced decades of delays in obtaining disability services, but parents and advocates now say changes to federal guidelines and the state's managed care system exacerbate frustrations. Syard Evans, CEO of Arkansas Support Network, a disability advocacy group, compared the current system to ineffective tools for families with complex needs. "What the PASSE system has done is turn that hammer into liquid dish soap,” Evans remarked.
Susan Roberts, a parent in Bella Vista, shared that her family waited 11 years for waiver approval for her son, TJ, who has cerebral palsy. Since securing the waiver in 2021, she’s been outspoken about the importance of applying. "It’s better to be on the list, even if you’re not moving, than to not be on the list at all," she said.
However, receiving benefits doesn’t resolve every issue. Roberts and Hellinga both described challenges accessing necessary services through Medicaid, such as equipment installations, which require multiple cost estimates before the state approves funding—a difficult process in regions with limited providers. Meanwhile, only medical services are covered for individuals on the waitlist, leaving families, like Hellinga’s, to fundraise independently to meet their children's needs.
Caregiving adds another financial burden. Both mothers are employed as caregivers for their children through insurance providers, but wages are low, with Hellinga earning $11 per hour. Critics like Evans have pointed to an outdated reimbursement system. A DHS-commissioned study found that supportive living costs were 23% higher than the rates Medicaid reimbursed in 2018, but required rate increases remain stalled.
Advocates worry that decreasing federal mandates could worsen care availability. A recent announcement from the U.S. Department of Justice stated that states are no longer legally required to provide home- or community-based services to people with disabilities, potentially driving families toward institutional care. Hellinga expressed fear over the implications for Landry’s future.
Though challenges abound, families are finding ways to adapt. Hellinga has been baking and selling cookies with Landry to raise funds for a service dog, determined to improve her daughter’s life despite systemic obstacles. "For the last year and a half, Landry and I have baked cookies at $5 apiece to raise money," Hellinga said, adding that the dog would be transformative for her daughter.
Arkansas parents have long urged officials to allocate more funds to clear the waiver waitlist. Past state investments alleviated some backlog, but new cases quickly refilled the list. For families like Roberts and Hellinga, securing adequate, consistent support remains an uphill battle.