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.

Despite comments DHHS Secretary Kody Kinsley made today at a press conference, it does not require the closure of Intermediate Care Facilities (ICFs) and it will not cause individuals, particularly those with medically complex needs, to be pushed out of institutions and into the streets. Importantly, the order says no one will be forced to leave their facility. Secretary Kinsley’s fearmongering about homelessness has no place in this serious discussion about our state’s responsibility to people with disabilities.

Concern and commitment are demonstrated through action, not just words. For years, policymakers have expressed “concern,” while the Innovations Waiver waitlist has gotten longer and the Direct Service Professional (DSP) crisis has gotten worse.

What DRNC’s clients with I/DD seek is a real choice between living in an institution and living in the community with supports they need. For far too long, individuals have been forced to live in an institution to get the behavioral and medical care they needed to be safe. Without any alternative, living in an ICF is not a real choice.

We have worked with community partners and the state to address the serious gaps in the I/DD service system and come up with solutions together – both before and after we filed the case. The judge gave the state two and a half years to develop its own effective plan – or to propose benchmarks it could live with. They produced neither.

This order gives people real choice about where to live, by requiring the state to build its community infrastructure. The timeline is reasonable, allowing for 6 years to build additional community options before any changes are required in admissions to institutional settings.

The order provides that those choosing to stay after the 6-year mark may remain and that ICFs may continue to accept admissions for shorter term care. It also gives the state 10 years to eliminate the waiting list for the more-than 16,000 people currently waiting for an Innovations Waiver slot.

DHHS may express concern, but it took this litigation, filed 5 years ago, to get even an Olmstead Plan, and it took this order to get the plan that was announced today, which finally contains some measurable goals and benchmarks to insure accountability.

Understanding how monumental this ruling is, DRNC offered on Nov. 18 to work with DHHS to stay certain parts of the order and to create a mutually agreeable timeline, honoring the urgency of community services for individuals that have already waited over a decade. We asked that members of the community, including people with disabilities, providers, and direct care workers be invited to the table to come up with a plan together. Instead, the Department decided to appeal, and hold a misleading press conference rather than engage the community.

We have reviewed the Department’s new plan, and are pleased to finally see benchmarks included, even if they are weaker than the judge’s order. What we didn’t see is why an appeal is required to accomplish these goals. In fact, today, Secretary Kinsley stated that 10 years wasn’t ambitious enough to reduce the waiting list. Great! Give us a long-term plan to eliminate the waiting list; a plan for 1,000 new slots in 2023 will not even keep pace with the list’s growth.

Let’s move forward together without the delay in implementation that an appeal will cause. DRNC remains ready, willing, and able to engage with the State to find a path forward that would make an appeal unnecessary.

DRNC will continue to fight for the I/DD community. Our vision is for every person with I/DD to have real, meaningful choices about where they live, work, and play. The Samantha R. decision is an important step toward making that a reality, and we will not give up the fight. Tell DHHS to dismiss the appeal and get to work. We’re ready to roll up our sleeves. Will you join us?

Statement on Samantha R Ruling
Fact sheets and FAQs
Read Samantha’s Story
Samantha R. Town Hall Recording
Message of hope from Samantha’s mother, Dana Rhoney