A crisis born of systemic neglect: Disability Rights NC CEO Virginia Knowlton Marcus urges immediate action

NC’s behavioral health system is in a crisis born of systemic neglect. As the state’s Protection and Advocacy agency (the P&A), every day, DRNC hears tragic stories from people who reach out, desperate for help.

Their stories are staggering. Families torn apart by the stressors of daily life without the support and services they need to succeed and thrive in their communities – circumstances that mean some people and families are faced with an unbearable decision.

One such family is the Rhoney family. Their daughter, Samantha, was 27 when she was admitted to a 285-bed state-operated institution for people with Intellectual/Developmental Disabilities (I/DD) because she was denied the I/DD services she needed to keep her at home with her family.

Her mom, Dana, wrote these pained words under her signature on the papers admitting her to the institution in 2015: “We have no choice but to sign.”

How can this be, more than 23 years after the Olmstead decision vindicated the right of disabled people to receive support in their community and avoid institutionalization?

DRNC filed suit on behalf of Samantha and others with I/DD who were institutionalized or who risked institutionalization because they state failed to take the steps necessary to offer essential services in their communities.

In 2020, Judge Allen Baddour ruled that the state is violating state law by denying people with I/DD the choice to live in their communities instead of institutions.

Since then, Judge Baddour gave the state ample time and numerous opportunities to provide him with a plan that has measurable goals and would ensure that people with I/DD wouldn’t be discriminated against. He carefully considered the voluminous, detailed information the state and DRNC provided.

This week, the judge issued an order with measurable timelines and goals. The Rhoneys are thankful and want Samantha’s legacy to be that other people with I/DD can stay in their communities.

“Our hope was, even though this happened to my daughter, Samantha, and she suffered, that it would help other people,” Tim Rhoney said to NC Policy Watch. “Their time’s up. They’re going to have to help these people.”

But instead, the state is talking about appealing. They are creating false narratives designed to scare people and communities.

The reality is the judge’s order is a road map to success for everyone in NC. It’s a roadmap for spending less money for better care and outcomes for disabled people. It’s also a roadmap for job growth and better pay for local workers and employers in rural and urban settings across the state. It’s an opportunity to re-think old service models and create better ones.

I urge you to reject false narratives and fearmongering about this case. Demand action. Tell the state not to waste any more time and money resisting compliance and to get to work on ending the wait. Stop telling the disability community what you think isn’t possible, and work with us on solutions. The waitlist for Innovations Waiver services is over 10 years long. Adding new slots each year is feasible and necessary.

Supporting people in their own community means over 18,000 more jobs across the state, using federal dollars and building local economies.

Community services – not institutions – bring jobs and build communities across the state. Institutions can – and must – evolve in order to meet the needs and wishes of people with disabilities.

The state has consistently stated they support and promote community care, but their actions do not support this claim.

Importantly, the judge specifically noted in his order that he gave the State the opportunity to develop a plan to address its ongoing violation of the law, that it hasn’t implemented recommendations from its own consulting firm, and has “not remedied their ongoing violation of the Persons with Disabilities Act [nor] provided the Court with an actionable plan with specific and measurable goals for compliance.”

He wrote: “Systemic relief is required that addresses the needs of people with I/DD who are institutionalized, as well as those who are at risk for institutionalization.”

Tell the State not to betray NC’s disability community. An appeal would be a betrayal and will further delay building the community infrastructure that is so sorely needed and already long overdue. The judge’s order means less costly care, better outcomes for all. NC can and must do this in 10 years. You can tell your elected representatives how important the implementation of this decision is to you and others with disabilities. Whether the state decides to comply with or appeal the decision is ultimately up to NC DHHS Secretary Kody Kinsley, Governor Roy Cooper, and Attorney General Josh Stein. Call on state officials and your elected representatives to begin implementation immediately.


Ruling Samantha R., et al. v North Carolina and the NC Department of Health and Human Services
Fact sheets and FAQs
Read Samantha’s Story
Samantha R. Town Hall Recording