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?

Overall:

• 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.