Community and Disability Awareness

We are excited to introduce Donene Feist as this week's guest blogger for The Arc of North Dakota. She is the Executive Director of Family Voices of North Dakota, driven by a personal passion for advocacy rooted in her experience as a parent of a young adult with a disability. Her background includes decades of involved work, from advisory roles in early intervention to positions at an Independent Living Center, as well as helping to create North Dakota's Parent-to-Parent Program.

Donene combines personal experience with professional knowledge to promote equity and inclusion for people with disabilities and their families. We feel privileged to feature her voice and story.

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Donene Feist, Executive Director, Family Voices of North Dakota

My experience as a parent to a young adult with a disability commenced shortly after his diagnosis. Navigating this journey has significantly influenced my perspective and strengthened my commitment to advocacy within the disability community.

Following my son's diagnosis, I was invited to join an advisory board focused on early intervention. This opportunity provided me with valuable insight into the distinctive challenges encountered by children with disabilities and their families. Such firsthand experience has deepened my understanding of existing support systems and highlighted persisting service gaps.

Through increased involvement, I identified notable inequities impacting individuals with disabilities across all age groups. These disparities underscore the pressing need for heightened awareness and concerted action within our community. Effective solutions require collective engagement and sustained advocacy efforts.

Early in my advocacy career, I was employed at an Independent Living Center, an experience that broadened my appreciation of the multifaceted barriers faced by people with disabilities. It further emphasized the necessity of advocacy and comprehensive support at both individual and systemic levels.

Promoting equitable access to education, employment, housing, transportation, and community integration remains fundamental. Persistent attitudinal obstacles continue to impede full participation for many individuals in these areas.

At that time, opportunities for family connection were limited. Families occasionally networked through word of mouth, lacking organized initiatives from service providers to facilitate such connections. This identified gap led to the creation of a Parent-to-Parent Program, which contributed to establishing North Dakota’s Parent-to-Parent initiative and the North Dakota Health Information and Education Center for families with children and young adults aged 0–26.

Research and professional experience demonstrate that meeting the needs of individuals with disabilities requires more than standard provider services. Service delivery typically adheres to set eligibility criteria, service types, and accessibility standards. Active engagement is necessary to ensure effective care management, transportation, social support, advocacy, medical treatment, therapies, and other essential services.

A family- and consumer-centered approach promotes the health and well-being of individuals with disabilities of all ages through collaborative partnerships between families and professionals. This model recognizes families and consumers as central decision-makers in all aspects affecting their lives. Upholding these perspectives throughout policy and practice at community, state, tribal, territorial, and national levels remains essential. Family-and consumer-driven care is widely recognized as best practice, resulting in superior quality services. The establishment of systems of care designed for those requiring additional support ultimately creates frameworks that offer benefits community-wide.

Advocacy is integral to advancing all dimensions of disability inclusion. Adopting inclusive practices fosters equity, ensuring that individuals with disabilities can participate in education, employment, and community life alongside their peers. It takes community to make it happen.