NC Medicaid Dashboard - Innovations Waiver Waitlist

NC DHHS has created an Innovations Waiver Waitlist dashboard. The dashboard represents individuals on the Innovations Waiver Waitlist by county and by LME/MCO. The goal is to help ensure that individuals are getting the right services, in the right settings, at the right time. Continue reading


Meet the Need NC’s Hear.Share.Act. is a monthly Lunch & Learn Series, which takes place on the third Tuesday of each month. Each month this series features a different topic intended to help people gain basic knowledge of the systems, programs, and services in place that serve individuals with intellectual and other developmental disabilities (I/DD). February’s topic - Building Relationships with Your Legislators HEAR: Understanding the Role of the NC General Assembly for I/DD Services and Supports Representative Sarah Crawford NC State House of Representatives   SHARE: I/DD Policy Update Lisa Grafstein Disability Rights NC Continue reading

Supporting Choice Videos

Rethinking Guardianship Supporting Choice and Self-Determination Videos Continue reading

Virginia Knowlton Marcus, CEO of Disability Rights NC, on State’s Appeal of Samantha R

Today we learned that NC DHHS is appealing the judge’s ruling in the Samantha R. v. NC case, The decision is legally solid, so it likely will not be reversed, but an appeal delays state action. The judge’s order is based on volumes of evidence produced during years of litigation, and it requires real action, not just talk. Continue reading

If I Had A Hammer - Bill Donohue Editorial

If I Had a Hammer…….I’d pretend I was as strong and patient as Judge Allen Baddour who lowered his hammer on NorthCarolina’s intransigent legislature and their fickle state agencies in 2020. His message was a ruling forour elected and appointed officials to listen and respond to court decrees dating back to the Olmsteaddecision of 1998, citizen cries from across the state and injustice generally. He demanded to see a planfor home and community based services for those with Intellectual and/or Developmental Disabilitiesseeking relief from institutionalization. “Give them a choice,” he argued.Two years and voluminous appeals later, he has now laid bare the tragic, systemic neglect of thisinaction. Their violation of state law has continued with no measurable goals or timelines and he is fedup.Earlier this month Baddour set benchmarks that the Department of Health and Human Services toproperly provide services for 16,000 North Carolinians with intellectual and developmental disabilities.They include shifting at least 11,300 individuals from institutional settings to community based settingsby January 1, 2031, via an Innovations (Medicaid) Waiver Slot. They include some home skill building,intensive recovery support, and transitional support for each individual receiving services.The state has until July 1, 2032, to reduce the number of recipients on the state’s Registry of UnmetNeeds to zero. That includes over 800 Forsyth County residents. The North Carolina Waiver ActionTeam and scores of other advocacy non-profits agree and have hammered in the morning, hammered inthe evening, all across the state for years. It’s been #2Long2Wait! Continue reading

Samantha R. Town Hall Nov 18

We Hear You: Talk to the Lawyers, Share Your Stories The historic Samantha R ruling is exciting news! It means actual change, not just promises, and it is the biggest opportunity yet to improve the lives of thousands of people in NC with intellectual/developmental disabilities (I/DD). You may have questions. And we know you have your own story to share. We want to hear from you! REGISTER HERE Friday, November 18th TWO 60-minute community conversations about the new ruling 12:00pm AND 4:00pm (to register for the noon session click here) Emma Kinyanjui and Lisa Grafstein, DRNC counsel for the plaintiffs, will be on-hand to summarize the ruling and answer your questions. We will also offer opportunities for you to briefly share your story, experiences, and needs. Please limit your story to 3 minutes; if you need more time, we can reach out to you separately to talk with you more in-depth. Get up-to-date before the meeting! Ruling Samantha R., et al. v North Carolina and the NC Department of Health and Human ServicesDRNC CEO Virginia Knowlton-Marcus Statement on Samantha R. RulingFact sheets and FAQsRead Samantha’s Story

Judge Orders NC to End Segregation of Thousands of People with Intellectual and Developmental Disabilities

North Carolina must stop discriminating against thousands of people with intellectual and developmental disabilities (I/DD) and provide them the services and support they need to live in their communities, according to a recent ruling in a state lawsuit*. NC Superior Court Judge R. Allen Baddour issued the ruling in Samantha R., et al. v North Carolina and the NC Department of Health and Human Services, a lawsuit Disability Rights NC (DRNC) filed in 2017 on behalf of people who were institutionalized or risked institutionalization because the state failed to make sure they could get essential services in their communities. State law requires that disabled people have supports and services they need to live in the community as an alternative to institutionalization. In an earlier ruling in the case, the judge determined the state is violating state law by denying people with I/DD the choice to live in their communities instead of institutions. The latest order imposes specific, measurable goals to ensure that the state addresses serious and persistent gaps in the I/DD system so people with I/DD aren’t forced into institutions because they can’t get what they need to live safely and thrive at home. Continue reading

Tailored Plan Implementation Delayed Until April 1, 2023

GASTONIA, N.C., SEPTEMBER 29, 2022 – The North Carolina Department of Health and Human Services (NCDHHS) will delay the implementation of the NC Medicaid Managed Care Behavioral Health and Intellectual/Developmental Disabilities Tailored Plans (Tailored Plans) until April 1, 2023. The decision is unanimously supported by the leadership of the state’s six Local Management Entity/Managed Care Organizations (LME/MCOs). Tailored Plans, originally scheduled to launch Dec. 1, 2022, will provide specialized services for individuals with significant behavioral health conditions, intellectual/developmental disabilities (I/DDs), and traumatic brain injuries (TBI), as well as physical health and pharmacy services. Partners members who will be eligible for the Tailored Plan will continue to receive their behavioral health services and I/DD and TBI supports through Partners and their physical health and pharmacy services through NC Medicaid Direct, just as they do today. The delayed start of Tailored Plans allows LME/MCOs, which will operate the Tailored Plans, more time to contract to expand their provider networks to support member choice and to validate that data systems are working appropriately. Continue reading

Currently allowing comments on new 1915i option Please read and comment if you have concerns. It will replace B3 services. 

Study finds racial, geographic inequities among recipients of NC disability services

For North Carolinians with intellectual and developmental disabilities, getting mental health treatment and other services that enable someone to live at home can be challenging.  Many parents and caregivers add their children with disabilities to a statewide waiting list to receive services under something called the Innovations Waiver, a North Carolina Medicaid program for people with disabilities who need regular assistance to continue living independently. Receiving these services can prevent people with disabilities from having no choice other than to live in a group home or other institutional setting. One Chatham County mother told NC Health News that she felt as if her teenage son with autism “hit the mental health care jackpot” when he finally got on the Innovations Waiver a few years ago.  Prior to receiving the Innovations Waiver, Bridget Narsh’s son Mason had been in and out of emergency rooms and psychiatric hospitals because there were so few other resources to help him. Read more.