Why is NCCDD funding this initiative?

• People with developmental disabilities typically benefit from various home and community-based services or Medicaid Waiver services that allow them to access healthcare and live successfully in their community of choice as defined by Olmstead.
• Currently, many individuals - and their families - who wait (often for over a decade) for a Medicaid Waiver in North Carolina, suffer and are at risk with minimal support.
• The Registry of Unmet Needs (RUN), also referred to as the waitlist of the Medicaid Innovations Waiver, is 16,000 and growing.
• Overall, it is difficult for individuals and their families to find and understand information about I/DD services and navigation.
• There is further disparity in access to I/DD services for minority populations.
• The ability for those with I/DD to live more independently in communities is impacted by the direct support professional workforce crisis, affordable housing, etc.
• All of these factors have led to significant unmet service and support needs for North Carolina’s I/DD community.

What are the major goals and objectives?

• Engage policy and community engagement advisory groups, bringing together leading organizations, state agencies and advocates to develop a common agenda for systemic change for I/DD long-term community services and supports.
• Develop a learning community to initiate and enact systemic change.
• Begin a groundswell of interest within the I/DD community regarding Meet the Need NC: Changing the I/DD landscape across the state and build broad, strong relationships.
• Develop Policy Plan for impacting Registry of Unmet Needs
• Understand and impact level of understanding of NC General Assembly regarding I/DD
• Develop and expand statewide Community Engagement Network
• Launch monthly lunch and learn series - Year 2
• Develop plan for lived experience network - Year 2
• Continue putting processes in place to manage initiative interest and grow support.
• Listen to further understand the current service and support needs across the state, including underserved populations.

What activities will this initiative set out to do?

• Educate, inform and begin plain language communication efforts to increase stakeholder understanding around issues that impact I/DD services and supports, including Medicaid Transformation, Tailored Plan, 1915(i). Engage stakeholder groups outside of I/DD community.
• Hold monthly separate and joint advisory group (Policy Task Force and Community Engagement Planning Committee) meetings.
• Expand and segment Community Engagement / Stakeholder database.
• Launch social media.
• Host monthly Meet the Need NC “Lunch & Learns.”
• Identifying unmet need for an I/DD Lived Experience Network (LEN).
• Continue to refine Shared Measurement and develop integrated 9-Month Workplan for Year 2 of initiative.
• Policy Alerts from Meet the Need NC regarding ongoing policy issues.
• NC General Assembly survey to identify baseline knowledge of I/DD community services and supports.
• Improved relationships with key stakeholder groups, including NC DHHS leadership and DD Consortium.

What has been achieved to date?

• Restructured advisory groups: Policy Stakeholder Task Force and Community Engagement Network Program Planning Committee for maximum impact.
• Fully engaged advisory groups.
• Increased stakeholder interest in Meet the Need NC across multiple stakeholder groups.
• Developed a better understanding of the problem and issues surrounding it.
• Relationships with key I/DD stakeholder groups and ability to relay messages through their participation in initiative increased.
• Black and Hispanic/Latino I/DD community inclusion.
• Beginning to increase knowledge of gaps in I/DD community services and supports for key policymakers.
• Addressing Information gap between beneficiaries/families and providers/agencies identified; need for plain language communications highlighted.
• 120 people participated in the Hear.Share.Act. Community Engagement Network events in Boone and Greenville in September 2022, and 30 organizations hosted resource tables at these events. The initiative developed an I/DD Resource Guide for both regions.
• 700 people registered for and 350 people attended the statement Community Engagement Network Hear.Share.Act. Lunch & Learn webinar sessions in January through March 2023.
• Launched a monthly Meet the Need NC newsletter sent to listserv of 1,900+ e-mail addresses with follow-up information to Lunch & Learns, I/DD resources, and a Policy Update section.
• Grew statewide mailing list/database to 1,936 subscribers and 2,087 contacts consisting of approximately 55% advocates/parents, 35% self-advocates and 10% other (organizations).
• Convened Policy Task Force to discuss responses to the Samantha R decision and appeal, the Governor’s budget, the DSP workforce crisis, the Registry of Unmet Needs, Tailored Plans, 1915(i) and other key topics impacting the initiative’s reach and influence.
• Formed the Lived Experience Network (LEN) advisory group within the Community Engagement Network to develop a strategic plan for the LEN to extend Meet the Need NC’s policy agenda. The Advisory group includes 15 self-advocates and parents who sit on multiple I/DD advisory groups around the state.
• Working with Grupo Poder Y Esperanza as the grassroots Spanish arm of the LEN to extend I/DD information to the Hispanic/Latino communities in North Carolina.

What long-term changes are expected as a result of this initiative?

• Meet the Unmet Service and Support Needs of the I/DD community in North Carolina.

Who is the contractor?

The contractor is Leadership Alliance of Neurodevelopmental Disabilities (LAND a program of MHTA)

Who can I contact for questions?

NCCDD: Pam Hunter Dempsey, Systems Change Manager, Pam.Dempsey@dhhs.nc.gov

Additional Resources

Click here to download a one pager of this initiative.