On May 30, 2023, DRNC filed a Motion to Modify a narrow provision in a judge’s November 2, 2022, ruling in Samantha R v. North Carolina, et al. The Motion asks the judge to remove a 2028 cessation date that would end new long-term admissions to certain residential settings. Below, we explain why we took this action and what will happen next.   

 Background  

Without a fully functioning community-based service system, there is no genuine choice for thousands of people. The Order in Samantha R requires the State to meet certain benchmarks toward improvements in the I/DD service system:   

  • Clear the Registry of Unmet Need (RUN) for the Innovations Waiver by providing services to all those waiting. The Order gives the State 10 years to fully resolve the RUN.  
  • Resolve the DSP crisis through pay and professional development. The benchmarks for this provision are not yet set. DRNC is working with DHHS to identify appropriate data to start with.  
  • Provide meaningful choice – and adequate community-based services – to people living in, or who wish to avoid, institutional or other congregate settings so that they can decide for themselves where they want to receive services. The benchmarks for this provision are annual targets set out in the Order.   

The last benchmark contains a term that some people in the disability community are concerned about. The term would end new long-term admissions to adult care homes (ACHs) and public and private Intermediate Care Facilities (ICFs) after 2028. This is the provision we are asking the judge to modify so that private ICFs are exempt from the cessation date.  We asked the State and DHHS to join us in November 2022 in asking the Court for this change, but they did not agree to do so.   

While the ruling is on appeal, DRNC decided to seek the judge’s permission to remove this concern for the community so we can all work together to develop the best ways to provide quality residential services to individuals with I/DD. DRNC has been actively seeking ideas and feedback from individuals with I/DD, family members, non-family member guardians, and providers. We must all be able to work together. We are stronger together.  

The Intent of the 2028 Date  

DRNC sees in our work every day that there is no real choice for thousands of people if safe and reliable community-based services aren’t readily available statewide – that is the reason we filed the Samantha R lawsuit. During the litigation, we asked for a date to hold DHHS’ feet to the fire. The intent was to ensure a real deadline instead of just a generalized goal for getting the necessary community-based services in place. For too long, the State has agreed with us in theory about the need for genuine community-based choices but has simply continued to fill beds with people who wanted community-based services but couldn’t get them.  

Historically, people have been placed in ACHs and state-operated facilities because of lack of alternatives. The same has been – and still is – true for some lower-quality private ICFs; non-family guardians, for example, often rely on them when other facilities deny admissions due to unmet behavioral needs. DRNC, through our monitoring work, continues to encounter facilities where disabled people are living in very poor-quality settings and experiencing neglect and abuse. Even some people who have family guardians cannot get supports elsewhere and have been forced to turn to undesirable settings. It is simply unacceptable to let this continue indefinitely.   

Based on this history and the ever-growing need, we sought a deadline to impose some accountability because that is all we have the power to do. The intent was not to put quality residential providers out of business or have anyone forced out of their home; in fact, the Order specifically says that is not required or intended.  

Why We Have Asked to Change the Order 

We have heard from people who believe – and deeply fear – that the 2028 cessation date will cause certain ICFs to close, resulting in unintended consequences for residents. We understand and appreciate this concern. DRNC’s intent has always been securing genuine choice, not to cause anyone to lose a placement that they want to keep. As noted above, we did not and do not think that wide–spread closure is required by the Order, but we also don’t want people to live in fear.  

DRNC uses litigation as a last resort. After working to get the State to negotiate toward voluntary compliance, we were left with no other option than to sue to obtain the results disabled people need and have legally protected rights to receive. By their actions, the State and Department have shown that they are not ready to take the necessary steps to build out an overdue community services system that provides the services people with I/DD need to have meaningful, informed choice about where they will live. 

It has also become clear to us that we need to step in to facilitate a long-overdue community conversation about ICFs and other settings. We have started that process and intend to continue to engage with people in the disability community, as well as providers and other stakeholders, about how to ensure that every individual with I/DD has a high-quality place to live, and as much community integration as they want. Our hope and intent is that we can work collaboratively to reshape our system and reach that outcome. We have been asking families and others who have identified high quality ICFs to work with us to develop recommendations. It will be a long process, and we hope that eliminating the 2028 date from the Order (if approved by the Court) as it relates to private ICFs will give people more peace of mind and enable us to have an honest, productive conversation about the future shape of I/DD services.   

What Happens Next?  

The judge will decide whether to remove the date for private ICFs. DRNC previously asked the State and DHHS to join our motion, but they declined. We hope they will not actively oppose our request this time. We will continue to share updates, including whether the State and DHHS oppose our effort.    

How Can We – Collectively – Ensure Accountability?  

As we said above, the 2028 date was meant to hold the State and DHHS accountable to developing the community-based service system. The I/DD community has waited years for long-promised changes and improvements, particularly when it comes to the RUN and the availability of providers. We want to be clear that we aim to remove the 2028 date but not accountability.   

Let’s all work together to ensure people with I/DD have access to meaningful and informed choices about how and where to live – with quality services and as much community integration as they want. We are stronger together!