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Disability Rights North Carolina vs. State of North Carolina

Full Case Title: SAMANTHA R., by her Guardian, TIM R., MARIE K., by her guardian, EMPOWERING LIVES GUARDIANSHIP SERVICES, LLC, CONNIE M., by her guardian CHARLOTTE R., JONATHAN D., by his guardian MICHAEL D., MITCHELL T., by his guardian, BETSY S., MICHAEL A., and DISABILITY RIGHTS NORTH CAROLINA v. STATE OF NORTH CAROLINA, NORTH CAROLINA DEPARTMENT OF HEALTH AND HUMAN SERVICES, and MANDY COHEN, in her official capacity as Secretary of the North Carolina Department of Health and Human Services

State of North Carolina – Wake County
General Court of Justice Superior Court Division
17 CVS 6357
Motion Filed May 15, 2019

Keywords: Injunctive Relief, Institutionalization, Segregation, Community-Based Services, North Carolina, Cost Ceiling, Integration Mandate, Olmstead, Intellectual and/or Developmental Disabilities (I/DD)

Summary and Facts of the Case

Several people who have Intellectual and/or Developmental Disabilities (I/DD) (plaintiffs), sued the state of North Carolina (defendants) in April 2018. They claimed the state violated Chapter 168A of the North Carolina General Statutes. This law prohibits disability discrimination, including segregation. The people with disabilities did not want to live in a segregated facility.

In May 2019, the people with I/DD asked the court for Partial Summary Judgment on their first claim of violations of Chapter 168A of the North Carolina General Statutes. They asked the court to rule that the state of North Carolina violated the Integration Mandate found in N.C. Gen. Stat. § 168A-7(b). They also requested the development and implementation of systems to address the violation.

Many people with I/DD in North Carolina live in state institutions but they want to live in the community. However, due to poor community-based services in place for all individuals with I/DD, they continue to live in institutions against their will. In fact, the state of North Carolina pays for many institutions, like state-operated Developmental Disabilities Centers, private Intermediate Care Facilities, and Adult Homes, all of which house people with disabilities.

In a 2011 study by Dr. John Agosta, found that North Carolina uses Developmental Centers, Intermediate Care Facilities (ICF), and nursing homes to house people with I/DD. This policy reduces the opportunities for people with I/DD to get services in the most integrated setting, as required by the Olmstead v. L.C. Supreme Court decision. The most integrated setting means that an individual with a disability must be able to interact with nondisabled persons to the fullest extent possible There is also data showing that North Carolina’s funding of I/DD services has been reduced since 2009, while the national average for funding I/DD services has increased. Finally, a lack of enough Direct Support Professionals prevents many individuals with I/DD who need community-based support from living in their community.

North Carolina’s main alternative to institutionalization of people with I/DD is a Medicaid waiver program called the Innovations Waiver. Under this program, services are available to individuals who need them to avoid institutionalization. The Innovations Waiver has a $135,000 cost limit (ceiling) and a limit on the number of hours of services a person can receive. People who have needs that exceed the limits of the waiver are referred to an ICF and are institutionalized.

Since the state of North Carolina mainly uses institutions as segregated housing for people with I/DD and it has no plan to change this policy, Plaintiffs sued.

Issues of the Case

  1. Can people with I/DD ask the court for injunctive relief because North Carolina did not follow Chapter 168A of the North Carolina General Statutes, the procedural due process requirements of the North Carolina Constitution, and the substantive due process requirements of the North Carolina Constitution?

Arguments and Analysis

1. Plaintiffs argued that North Carolina violated the Integration Mandate.

In 1999, the Supreme Court ruled in the Olmstead decision(Olmstead v. L.C. (98-536) 527 U.S. 581 (1999) that unjustified segregation of people with disabilities is discrimination. The Department of Justice’s (DOJ) regulations under the ADA say that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”

In response to Olmstead, North Carolina adopted N.C. Gen. Stat. § 168A-7(b), which included language like that used in Olmstead. There are about 5,200 people with I/DD living in institutions in North Carolina. The number of people in institutions is rising rather than going down. Defendants admitted that there are residents of North Carolina with I/DD who are institutionalized but want to live in their communities and could do so with the right supports. The defendants track the process for institutionalization of people with I/DD, and they have transition lists of people who should be in the process of leaving institutionalizations. However, these lists track only people living in Developmental Centers and ignore all other types of institutions in the state.

There are gaps in community services in North Carolina that make discharging institutionalized people difficult. There is limited availability of psychologists with I/DD skills. Defendants agree there is an insufficient number of service providers. However, Defendants have done nothing to resolve the problems, violating the Integration Mandate with respect to Developmental Centers.

Additionally, the state has taken no steps to fix the problems of Intermediate Care Facilities and Adult Care Homes. It has failed to understand that asking an individual or their guardian whether they want to leave a facility is not in compliance with the Integration Mandate. On top of that, the state has created widespread risk of institutionalization by failing to address the growth of the Registry of Unmet Needs. The state also has policies related to the Innovation Waiver that limit access to community-based services. By failing to provide people with I/DD with enough services, the state of North Carolina is increasing the risk of people being institutionalized.

Although the Innovations Waiver program is an option, it limits the funding and/or services someone can receive. The waiver limits are too low to cover the costs of community living and other services individuals with I/DD need, leaving thousands at risk of institutionalization. The state still has not taken any steps to make sure there are enough services or to hire more Direct Support Professionals. Because North Carolina has not put enough resources into deinstitutionalization of people with I/DD, it has violated the Olmstead Integration Mandate, and several state laws.

The State of North Carolina tried to argue that providing the proper funding and/or resources to comply with the Olmstead Integration Mandate would be an undue burden, thereby protecting the State from having to change their policies or follow the law. However, Plaintiffs argued that there are no facts on the court record that show this is an undue burden for the State.

2. Plaintiffs argue that complete relief is both necessary and appropriate to fix the state’s violation of Olmstead.

Plaintiffs understand that deinstitutionalization under Olmstead is a very complex process. For it to work well, there must be leaders who can make a detailed plan and organize a process to deinstitutionalize people with disabilities and reduce the need for institutions. However, North Carolina has shown that it does not have this kind of leadership, and that it does not have a current plan or process to solve this problem. Although the process of deinstitutionalization is the responsibility of the legislative and executive branches of government, Plaintiffs argue that when the government fails to protect the rights of citizens, then declaratory and injunctive relief (which is a court order to stop what the state is doing) is necessary. Therefore, Plaintiffs are entitled to relief, not for themselves, but to fix the broken I/DD service system that Plaintiffs and others with I/DD rely on.

Remedies Sought

Plaintiffs are seeking declaratory and injunctive relief from North Carolina’s clearly undisputed violation of Chapter 168A of the North Carolina General Statutes, the procedural due process requirements of the North Carolina Constitution, and the substantive due process requirements of the North Carolina Constitution in the form of: (1) a court choosing one or more experts with input of the parties; (2) allowing the selected expert(s) to design and implement a process including stakeholder engagement for development of a detailed, specific, and highly targeted plan to address: community-based service capacity, community-based provider quality, transitions processes and in-reach efforts, system navigation (discharge planning and case management), diversion from institutions, funding biases, waiting lists, identification of timelines, resources, personnel, leadership, and sustainability, and other relief as may be needed to set up an appropriate remedy, and overseen by the Court.

Policy and Practice

Institutionalization is a systemic issue, and the number of people with I/DD who are institutionalized will drop only with political, executive, and what appears to be court action. While the Courts cannot control the money invested in deinstitutionalization, they can award injunctive relief to move the process along faster, especially in cases like this one, where the laws were so obviously broken.



These materials do not constitute legal advice and should not be relied upon in any individual case. Please consult an attorney licensed in your state for legal advice and/or representation. These materials were prepared by the legal research staff of the Burton Blatt Institute (BBI) at Syracuse University in partnership with the Southeast ADA Center to highlight legal and policy developments relevant to civil rights protections and the impact of court decisions in the Southeast Region under the Americans with Disabilities Act (ADA). These materials are based on federal disability rights laws and court decisions in effect at the time of publication. Federal and state disability rights law can change at any time.  In addition, state and local laws and regulations may provide different or additional protections. Materials are intended solely as informal guidance, and are neither a determination of your legal rights nor responsibilities under the ADA or other federal, state, and local laws, nor binding on any agency with enforcement responsibility under the ADA. The accuracy of any information contained herein is not warranted. Any links to external websites are provided as a courtesy and are not intended to nor do they constitute an endorsement of the linked materials.