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Meet the Need NC Year 3 (of 4)

Why is NCCDD funding this initiative?

  • It is hard for individuals, families, and staff to find, keep, and best use services.
  • Many people who need help and support are not getting it. People can’t ask for help if they do not know what help is available.
  • People of all ages with I/DD and their families are just surviving, not thriving.
  • There are a lot of changes and transitions going on, including Medicaid Transformation and Expansion, 1915(i), and the end of The Public Health Emergency.
  • The Registry of Unmet Needs (RUN) is 17,000 and growing; the number of slots is not.
  • Our current K-12 education system is not preparing those with I/DD for living their most successful lives.
  • Community living and inclusive employment are not realities in NC for those with I/DD; Opinions vary - People don’t always agree on what is best for people with I/DD to live or work in the community.
  • 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?

  • Be a catalyst for I/DD systemic change in NC using a Collective Impact model to meet the service and support needs of those with I/DD and their families throughout their lifespans.
  • Develop and expand a statewide I/DD grassroots, lived experience network to become the driver of Meet the Need NC, and ensure sustainability of the initiative.
  • Drive a groundswell of interest regarding Meet the Need NC through regular communications around key, timely topics to spearhead an I/DD “Learning Community”.
  • Understand and impact level of understanding of those outside the I/DD Community regarding what enables I/DD-informed communities.
  • Continue putting processes in place to manage initiative interest, integrate programming and grow support.

What activities will this initiative set out to do?

  • Increase stakeholder understanding around key issues that impact I/DD services and supports, including Innovations Waiver/Wait list, DSPs, Medicaid Transformation, Tailored Plan, 1915(i), and Medicaid Expansion; Inspire the use of plain language communications for beneficiaries.
  • Build and maintain authentic relationships with key stakeholder groups, including state agencies.
  • Listen well and consistently to constituencies across the state to further understand the similar and diverse service and support needs, including underserved populations, amidst ongoing environmental change.
  • Engage stakeholder groups in and outside of I/DD community.
  • Continue to refine Shared Measurement as part of the Collective Impact model and develop an integrated 2024 Work Plan.

What has been achieved to date?

  • Using key values and guiding principles for interactions, evolved over Year 1 and 2 to form a highly engaged “Advisory Collaborative” of 30+ leading key stakeholders and organizations with diverse perspectives.
  • Developed a vision for the Lived Experience Network Speaks (LENS) and they are organizing to begin growing a grassroots network across the state.
  • Hosted a hybrid (in person and online) I/DD Policy Think Tank with 78 participants representing 47 organizations across systems, disabilities, ages, level of challenge and state; 62% of attendees were new voices to the table.
  • Developing a Work Plan for Year 3 based in the data gathered from the I/DD Think Policy Tank, and analyzed by Meet the Need NC advisory groups (Advisory Collaborative and LENS).
  • Hosting monthly Meet the Need NC Lunch and Learn “Hear.Share.Act,” webinars to highlight and drive conversation around key I/DD issues around system change; Publish monthly newsletter to extend learnings of webinars.
  • Formed Lived Experience Network Speaks (LENS) advisory group (self-advocates and advocates) and developed a strategic purpose and outcomes statement for it to extend Meet the Need NC’s policy agenda through grassroots efforts.
  • Increased cultural competencies for working with Hispanic/Latino I/DD communities.
  • Finalized North Carolina General Assembly survey report with researchers.
  • Exhibited and presented at December 2023 i2i conference highlighting the value of having people with I/DD lived experience at the table where decisions are made about them.

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.
  • People with lived experience are key to our efforts drive change.

If we reach our vision of meeting the service and support needs of the I/DD community, these are the outcomes we expect to see (from our Meet the Need NC common agenda):

  • Awareness and Understanding Expanded; Equitable Access; Informed Families – regarding I/DD Service and Supports and their navigation for all who need them in NC
  • Increased Services and Supports
  • Reduced Time on the Registry of Unmet Needs
  • An Educational System that Prepares our Children with I/DD for a Successful Adulthood
  • Community Inclusion Embraced/Expected (Naturally) – In and Outside the I/DD Community across the Lifespan
  • Collaborative Advocacy for Change is the Norm 

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, [email protected]

Additional Resources

Click here to download a one pager of this initiative.



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North Carolina Council on Developmental Disabilities

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This project was supported, in part by grant number 2001NCSCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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