During the first year of the NC SEG initiative, the grantee, National Association of State Directors of Developmental Disabilities (NASDDDS), convened a statewide group of stakeholders that consisted entirely of consumers and family members. When the proposed changes in Medicaid were discussed, the group indentified the following five outcomes a new Medicaid system should provide:

• No waiting lists
• Inclusive living
• Integrated employment
• Asset development
• System accountability

To make these outcomes a reality, the NC SEG members were charged with building support for the outcomes among the local groups they represented. In its second year, members sought the endorsement of the Consumer and Family Advisory Committee, provider agencies and other nonprofits. To date, the following organizations have endorsed the outcomes listed above:

• North Carolina Substance Use Disorder Federation
• The Power Of The Dream
• North Carolina Consumer Advocacy, Networking and Support Organization
• First in Families of North Carolina
• NC Statewide Independent Living Council
• State Consumer and Family Advisory Committee
• North Carolina Council on Developmental Disabilities
• Disability Rights North Carolina
• Developmental Disabilities Consortium

With an energized group of stakeholders and partners throughout the disability community, this initiative has been quite successful. First, it has allowed those most affected by changes in the Medicaid system to have a voice in the design of the new system. Secondly, this group is highly valued by policymakers at North Carolina’s Division of Mental Health, Developmental Disabilities and Substance Abuse Services (MH/DD/SA) because it is cross-disability and has a diverse representation of individuals from the State. Third, NC SEG has offered family members and self-advocates the opportunity to become well informed about Medicaid changes. And lastly, the NC SEG members have learned advocacy skills that will serve them when they meet with legislative members and communicate the importance of those outcomes in their decision-making.

NC SEG is hosting Consumer and Family Community Chats to discuss the new home and community-based settings (HCBS) rules – coinciding with the Department of Health and Human Services Listening Tour. The chats will be in Greenville, Winston-Salem, Wilmington and Asheville. This is a great chance, as a stakeholder, to get involved and have a meaningful voice in public policy.

For more information on the NC Stakeholder Engagement Group, visit www.ncseg.com