Empowering Parents: Oregon's Struggle to Support Caregivers of Children with Disabilities

In Oregon, parents of children with severe disabilities are facing a daunting challenge. The state's new Children's Extraordinary Needs waiver program, designed to provide financial support for their caregiving efforts, has been met with both hope and frustration. While the program represents a significant step forward, its limitations have left many families struggling to make ends meet and care for their loved ones.

Navigating the Waitlist: A Precarious Balancing Act

The Waitlist Dilemma

The Children's Extraordinary Needs waiver program in Oregon has a limited capacity, with only 155 families able to participate at a time. This has resulted in a lengthy waitlist, with some children, like Malachi, occupying the 1,151st spot. For parents like Calli Ross, Paige Hall, and Shasta Kearns Moore, the waitlist represents a daunting obstacle, as they face the difficult choice of either seeking outside help that may not meet their children's needs or providing the care themselves, unpaid.

Limitations and Challenges

The program's design has also been a source of frustration for many families. The compensation provided covers only a fraction of the hours that parents spend caring for their children, and the income from the waiver may be enough to disqualify them from other essential assistance programs, such as food and housing aid, without making up the difference. As a result, a third of the families selected in the original lottery have decided not to participate, citing these limitations as the primary reason.

Advocating for Change

Undeterred, parents and advocates are pushing for legislative action to address these shortcomings. The proposed "Tensy's Law," named after Calli Ross's son, aims to expand the paid parent benefit to all eligible children. While the cost estimates for such an expansion are significant, advocates argue that the state has already committed to providing these services and that the current system relies heavily on unpaid parent labor, which is unsustainable.

Workforce Development Initiatives

In response to the challenges faced by families, the state has invested in workforce development and retention initiatives, including $47 million in COVID-19 relief funds to attract and train more caregivers. However, parents like Shasta Kearns Moore believe the solution is simpler: "We're the workforce," she says, advocating for the state to directly compensate parents for the complex care they provide.

Seeking Secure Futures

For parents like Paige Hall, the prospect of participating in the Children's Extraordinary Needs program is a double-edged sword. While the income from the program could provide much-needed financial relief, it may also disqualify them from other essential assistance programs, leaving them in a precarious position. The 20-hour cap on compensation is seen by many as inadequate, failing to recognize the full-time nature of their caregiving responsibilities.

Collecting Data, Informing Change

As the state gathers data on the program's participation and costs, advocates are also collecting their own information to support their push for legislative reform. Surveys have revealed that many families are unable to find enough qualified professionals to provide the full scope of care their children require, leading them to rely on unpaid parental labor. This data is crucial in highlighting the need for a more comprehensive and equitable solution.

Hopes for the Future

Despite the challenges, parents like Calli Ross remain hopeful that the state will fulfill its promise to support families caring for children with complex needs. The passage of "Tensy's Law" could be a significant step forward, ensuring that all eligible children have access to the care and support they deserve. As the legislative process unfolds, these parents and advocates continue to fight for a future where their children's needs are met, and their own sacrifices are recognized and compensated.