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
Click here to download a one pager of this initiative.