North Dakota extends Family Caregiver Pilot Program to support families with disabilities

The House Human Services Committee convened on March 12, 2025, to discuss critical updates regarding Medicaid waiver funding and the continuation of a successful pilot program aimed at supporting families with children who have disabilities. The meeting highlighted the complexities of integrating various waivers and the urgent need for continued support for families relying on these services.

The committee began by acknowledging the challenges faced in blending extraordinary supports with existing Medicaid waiver funding for in-home services. Despite the good intentions behind the pilot project, the process has proven to be intricate. A summary of the pilot project guidelines and data utilization was presented, alongside testimonies from families who shared the positive impacts of the program.

The discussion emphasized the need for improved coordination and access to services for individuals with disabilities through a new initiative called the cross disabilities waiver. This approach aims to provide greater service options without forcing families to choose between different waivers. The target date for implementing this new waiver is set for the end of the next biennium, marking the third year of work on this initiative.

A key proposal discussed was the extension of the pilot program until the cross disabilities waiver is fully operational. The pilot, which began in April 2024, has already seen a significant number of applications, indicating a higher demand for services than anticipated. Currently, there are 82 children on a waiting list for these essential services, underscoring the urgency of maintaining support for families.

The committee reviewed funding recommendations, with an initial suggestion of $9 million to continue services for those currently enrolled. The appropriations committee has expressed support for this investment, recognizing that providing care at home is not only more effective but also more humane than institutional care.

Testimonies from advocates, including representatives from Designer Genes of North Dakota, reinforced the importance of the pilot program. They highlighted the need for quality waiver service options and the critical role of family-paid caregiving in ensuring that individuals with disabilities can remain in their communities.

The meeting concluded with a commitment to continue the pilot program while transitioning to the cross disabilities waiver, ensuring that families receive the necessary support to keep their children at home. The committee's discussions reflect a strong dedication to improving the lives of individuals with disabilities and their families in North Dakota.