About Us

The NC Stakeholders Engagement Group was an initiative funded by the North Carolina Council on Developmental Disabilities from 2013 - 2016. The initiative is no longer active, but the website is being maintained as a resource to the general public. If you have questions, email info@cb-cg.com.

Who is the NC Stakeholder Engagement Group?

The NC Stakeholder Engagement Group (NC SEG) is a cross-disability advocacy initiative focusing on shaping the long-term support and service systems through meaningful engagement and dialogue with policymakers. We are currently the only group in North Carolina that consists solely of individuals receiving services and their family members. There are no provider organizations in order to avoid a potential for a conflict of interest. We are called "Stakeholders" because we are affected by the decisions the State makes about long term care. We are called "cross-disability" because we represent individuals with developmental disabilities, mental health, substance use disorders, physical disabilities, and family caregivers. Our members come from all areas of the state.

Who Are Our Partners?

The NC Stakeholder Engagement Group initiative is administered by the National Association of State Directors of Developmental Disabilities Services (NASDDDS), funded by the North Carolina Council on Developmental Disabilities (NCCDD), and works in collaboration with the North Carolina Department of Health and Human Services (DHHS).

Why Did We Get Together?

North Carolina wants to make changes in the way Medicaid services are delivered. We met to develop a consensus about what we want from a long-term care system - the values, principles, needs, and outcomes important to us – and then to communicate that consensus to key decision makers. The results of the system re-design is our target; we do not focus on "how" the state should get there - such as who is in charge and how the money flows. We met for six days over six months and learned from state and national experts about how Medicaid works, expectations of the Federal Government, possible options for what the future system might look like, and how we could best communicate our consensus message to the right people – or, to put it another way, "get our voices heard".

What Did We Discuss?

Our group quickly defined five outcomes that were important to individuals and families from all disability groups. We want a system that helps us be more independent — a system:

1) that has no waiting lists;
2) where individuals have jobs in integrated employment settings;
3) where individuals live inclusively in their communities;
4) where people with disabilities have the ability to develop assets, and;
5) where the system is accountable for meaningful outcomes.

Additionally, considerable time was spent discussing our important expectations of the system such as: getting services for the first time, assessment, support coordination, assuring the availability of qualified providers, and protecting our rights. We identified 12 expectations that are necessary to achieve the outcomes we desire.

What Was Developed?

The "NC Outcomes and Expectations for Managed Long Term Services and Supports Report" emerged from these stakeholder discussions. This report is the guiding document of the NC SEG initiative. It has been shared with the Medicaid Reform Advisory Group, members of the North Carolina General Assembly Legislative Oversight Committees on Health and Human Services, leaders at the LME/MCO level, and with a variety of local consumer advocacy and constituent groups across the state. The findings were also utilized to develop the NC SEG’s Outcome & Expectations Scorecard, a tool the initiative uses to evaluate legislative bills and policy changes.

What Do We Want To Do With This Information?

We want policymakers - leaders at DHHS, at Medicaid, and our state legislature - to know what is important to us! As plans are developed for consolidating LME/MCOs, medical care, and how we get services, we hope that these decision makers will seriously consider our recommendations; that they will carefully look at these outcomes and expectations, and discuss real ways to make improvements today and in the future to make these outcomes and expectations a reality.

What Is Next?

In addition to the products developed as a result of the NC Stakeholder Engagement Group Initiative, a benefit of the Initiative has been the formation of a Stakeholder Engagement Workgroup that is cross-disability, enthusiastic, and positive about potential reforms in supports and services for individuals with disabilities and their families in North Carolina. It is an opportune time to build upon the Stakeholder Engagement Workgroup’s accomplishments and further communication and reform strategies in support of the articulated expectations.