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Registry of Unmet Needs

NC DHHS and the NC Council on Developmental Disabilities held a webinar Monday, May 10, on the Registry of Unmet Needs. Some factoids coming out of that session include:

  • About 50% of the 296 attendees did not know much if anything about the RUN (wait list)  If you do not know about this, please search on our website NOW!
  • There are over 15,000 on the RUN (and over 13,000 with an Innovations Waiver)
  • Each LME/MCO** has a 1-800 number and website with information on how to apply for the RUN
  • One or two LME/MCOs say it's the member's responsibility to update and confirm the member's status on the RUN
  • DHHS is working to build a statewide database of the RUN (which most states already do)
  • There is a need for a statewide grassroots advocacy group (some states actually pay a stipend and travel for members to come testify)
  • Texas has over 100,000 on the wait list
  • Wisconsin has no wait list (the legislature automatically allocates funds)
  • 72% of people with IDD live with family; 25% of their caregivers are over 60 years old
  • NCCDD is voting this week on an RFA to study the RUN over the next 3-4 years
  • This email address is being protected from spambots. You need JavaScript enabled to view it. is the supervisor for the RUN at Alliance, and has several people working for her on it
  • To qualify for the Innovations Waiver you need some form of documentation that a disability was diagnosed before the age of 22
  • SB 350 is the bill in the legislature aiming to add 1,000 new Innovations Waiver slots

 **   LME/MCOs in NC Local Management Entities – Managed Care Organizations (LME-MCOs) manage the care of beneficiaries who receive services for mental health, developmental disabilities or substance use disorders.

NCFASD Informed is pleased to offer a monthly adult group for those with an FASD; participation is open to adults over 18 from any US state, not just North Carolina. The group will be led by an adult with an FASD via Zoom on the 4th Monday of each month, 7-8pm Eastern Time.  If interested, please email Delaney Kay at This email address is being protected from spambots. You need JavaScript enabled to view it.