Families Struggle with Limitations of Oregon's New Disability Care Program

The article explores the challenges faced by parents of children with severe disabilities in Oregon, as they navigate the new Children's Extraordinary Needs waiver program. Despite the program's potential to provide much-needed financial support, parents are grappling with a limited budget, long waitlists, and concerns about losing other vital assistance.

Unlocking the Potential of Oregon's Disability Care Program

Waitlists and Limitations Hinder Access to Critical Support

The Children's Extraordinary Needs waiver program in Oregon represents a significant step forward in supporting families with children who have severe disabilities. However, the program's implementation has been marred by significant limitations that have left many families struggling to access the care their children desperately need.The program is designed to provide financial compensation to parents who provide up to 20 hours of care per week for their children with complex medical and behavioral needs. Yet, with only 155 families able to participate at a time, the waitlist has grown exponentially, with some children, like Malachi, facing a wait of over 1,000 spots before they can even be considered for the program.This lengthy waitlist has forced many families to make difficult choices, either continuing to seek outside help that is often in short supply and not tailored to their children's needs, or providing the care themselves without any financial support. As Shasta Kearns Moore laments, "We're promising families support that isn't real. We're saying, 'Your child deserves this many hours of support,' and looking the other way on the fact there is nobody to fill those hours."

Inadequate Funding and Unintended Consequences

The limited funding of the program, capped at $7.7 million annually, has also created significant challenges for participating families. The 20-hour per week cap on paid care is seen by many as woefully inadequate, with parents like Paige Hall describing it as "a slap in the face." The concern is that the compensation provided by the program may not be enough to replace the vital public assistance programs, such as food stamps, that these families rely on, potentially leaving them in an even more precarious financial situation.This dilemma has led some families, like Paige's, to opt out of the program altogether, fearing the loss of essential benefits would outweigh the limited financial support offered. As Calli Ross observes, "It really keeps families in poverty, and we're afraid that it's almost set up like that to fail."

Advocating for Comprehensive Support

Undeterred by the program's limitations, parents and advocates are rallying to push for legislative changes that would expand the reach and scope of the Children's Extraordinary Needs waiver. The proposed "Tensy's Law," named after Calli Ross's son, aims to make paid parent caregiving available to all eligible children, not just the 155 families currently served.The fight for this legislation is driven by a fundamental belief that the state has a responsibility to provide the level of support it has promised to these families. As Senator Deb Patterson eloquently states, "This is not just watching your kids and making sure they're fed and get to school on time. This is the work of providing medical and educational support for hours and hours on end forever. It's not like typical parenting in any way, shape or form."Advocates argue that the state's current approach of budgeting based on the hours of care actually used, rather than the hours promised, has created an inherent underfunding of the system and a reliance on unpaid parent labor. They believe that by properly funding the program and expanding its reach, the state can fulfill its obligation to these families and ensure their children receive the comprehensive care they deserve.

Investing in the Workforce and Innovative Solutions

Alongside the push for legislative changes, the state is also taking steps to address the broader workforce challenges that have contributed to the shortage of qualified professionals available to provide care for these children. The $47 million in COVID-19 relief funds directed towards workforce development and retention initiatives, such as incentive payments, specialized training, and targeted marketing, are seen as a positive step in the right direction.However, parents like Calli Ross argue that the solution is simpler than the state's complex approach. "We're sitting here like, 'Just pay parents,'" she says. "We're the workforce." By recognizing parents as the primary caregivers and compensating them accordingly, the state could not only alleviate the financial burden on families but also tap into a readily available and highly skilled workforce.As the Children's Extraordinary Needs waiver program continues to evolve, the experiences of these families serve as a powerful reminder of the critical importance of providing comprehensive and accessible support for children with severe disabilities and their caregivers. The path forward may be challenging, but with the unwavering determination of parents and advocates, the promise of this program can be realized, ensuring that no family is left behind in their pursuit of the care their children so desperately need.