An Urgent Need to Redouble Our Advocacy!
We must again redouble our advocacy for people with intellectual and developmental disabilities (I/DD) after the state’s appeal of the Samantha R decision and as we prepare for the upcoming legislative session. The North Carolina Council on Developmental Disabilities (NCCDD) will continue to advocate with state leaders at all levels to meet the unmet needs of our community.  

North Carolina’s I/DD system for individuals in the community has been underfunded for decades. Our Direct Support Professional workforce is vanishing because wages are less than many entry-level fast food and retail jobs. We have over 16,000 people on our waiting list. And we have people in institutions and large congregate settings who could be living full and meaningful lives in the community.

We must continue to raise awareness that the lives and freedom of North Carolinians with I/DD are in jeopardy because they do not have the support they need to eat, bathe, work, and do other activities of daily living. Families and individuals are in crisis because many have been waiting for an Innovations Waiver for over 10 years and sometimes over 15 years. This crisis was reflected in this recent news piece on CBS 17 featuring Council Chair Bryan Dooley. A 2 Fold Crisis: Thousands with disabilities struggle to find the help they need in NC.

Leaders of NCCDD met with Governor Roy Cooper and Secretary Kody Kinsley on Tuesday morning to ask that they work with us to ensure these urgent unmet needs are met. Both Governor Cooper and Secretary Kinsley committed to working with developmental disability advocates on these critical issues.  

NCCDD will continue to meet with legislative leaders to continue this advocacy.

While the state appealed the Samantha R decision, there is general agreement that there needs to be an end to the waiting list in ten years, substantial wage increases for Direct Support Professionals, and support for people to leave institutions and large congregate settings so they can live in the community. There is not, however, a sufficient process or budget to assure the disability community that this will happen over the next decade or less. NCCDD appreciates the willingness of leaders across the state to develop a concrete path for these to happen.

NCDHHS issued a statement and released a plan at the time of its appeal for how it plans to address the issues raised in Samantha R in the upcoming legislative session. Take time to review this plan because it reflects what will likely be in the Governor’s budget. NCCDD will discuss this plan at its December 15th Policy Education Committee Meeting at 10:30 am. Disability Rights North Carolina issued this statement on the appeal and moving forward.

We encourage you to be involved with us in our policy education and advocacy. If you’d like to be involved, please email [email protected]

NCCDD will continue to advocate and raise awareness on the urgent unmet needs of the I/DD community in the following additional ways: 

  • Meet the Need initiative:  NCCDD is funding an initiative to bring all I/DD stakeholders together to raise awareness and engage the community on the unmet needs of individuals on the waiting list and those who do not have services because of the workforce shortage. You can keep up with Meet the Need NC and its events on its website.
  • Unmet Needs Film: NCCDD is completing a film that tells the stories of North Carolina citizens on the waiting list and those experiencing the workforce shortage. More information will be coming soon on our website and in our newsletter.
  • Innovations Waiver Direct Support Professional Rate Study:  NCCDD has partnered with two provider organizations to do an in-depth rate study to determine how much it would cost to increase DSP rates to $18.00 an hour or more. 
  • Policy Education and Advocacy: NCCDD has significantly increased its education in the last two years with monthly Policy Education Committee Meetings, regular meetings with policy leaders, advocates, and stakeholders, leadership training, a Self-Advocate Discussion Series, and statewide webinars and events. You can keep up with these on our calendar and through our newsletter.

Sign up for our newsletter to stay informed and keep up with our policy updates. Join us in our advocacy. You can find events and activities involving the I/DD community on our calendar.
About the North Carolina Council on Developmental Disabilities: The North Carolina Council on Developmental Disabilities (NCCDD) works to assure that people with intellectual and other developmental disabilities (I/DD) and their families participate in the design of and have access to needed community services, individualized supports and other forms of assistance that promote self-determination, independence, productivity and inclusion in all areas of community life. Through its Five-Year Plan, the Council identifies and funds innovative projects and initiatives that promote the goals of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) for all North Carolinians.