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By Rose Hoban

North Carolina is failing in its obligation to give people with intellectual and developmental disabilities the care they need and that the state is obligated, by law, to provide.

That’s the allegation made in a lawsuit filed in Wake County Superior Court on Wednesday by Disability Rights North Carolina, an advocacy group.

The suit alleges that the Department of Health and Human Services has fallen down on its responsibility to provide for five intellectually, developmentally and physically disabled plaintiffs who are standing in for other North Carolinians with intellectual and developmental disabilities (I/DD). Instead, the state has allowed for these five plaintiffs to be institutionalized – sometimes against their wills.

Disability Rights NC head Vicki Smith. Photo credit: Rose Hoban

Instead of finding the plaintiffs appropriate places to live in the community, the suit alleges that DHHS has “failed to ensure that individuals with I/DD who are ready for discharge from institutions receive necessary support to transition to community living.”

“DHHS must provide services to people with intellectual and developmental disabilities in the most integrated setting appropriate for their needs,” explained Vicki Smith, executive director of Disability Rights NC, in a statement.

“There are thousands of people on waiting lists for community-based services, and the number keeps growing. They languish on those waiting lists for years—in some cases, more than a decade.”

Forced out of home

The lead plaintiff, Samantha R., is a 28-year-old woman with multiple disabilities who lived with her parents for most of her life until recently. But when the behavioral health management entity (LME-MCO) managing her care cut her services, Samantha R.’s parents felt compelled to place her in an institution.

When George HW Bush signed the Americans with Disabilities Act in July, 1990, he stated, “Let the shameful walls of exclusion come tumbling down.” Pictured with Bush L to R, sitting: Evan Kemp, Chairman, Equal Employment Opportunity Commission, Justin Dart, Chairman, President’s Committee on Employment of People with Disabilities. L to R, standing: Rev. Harold Wilke and Swift Parrino, Chairperson, National Council on Disability. Photo courtesy: Executive Office of the President of the United States

The report comes scarcely a week after a report from the North Carolina State Auditor finding high salaries, lavish parties and expensive perquisites being paid to administrators of the state’s largest LME-MCO.

“Her parents agreed to place Samantha R. in an institution only after years of trying, unsuccessfully, to navigate the complex service system without a case manager, and without an adequate network of community-based providers,” the complaint reads. “Samantha’s parents were provided a list of more than 70 providers to contact, only three of which were even potentially equipped to handle her medical and behavioral needs, and none of which had space available or were willing to serve Samantha.”

The complaint alleges DHHS failed to enforce state laws and regulations, leading to Samantha’s placement against her and her parents’ will.

Case studies of the other plaintiffs’ stories tell similar tales: annual service budgets cut, plaintiff’s being moved from facility to facility, living far from family, and denials of service requests by LME-MCOs.

The complaint also alleges that keeping people such as these in institutional settings costs the state an average of $150,000 per year, even as placement in the community is about a third of the cost.

History of problems

The complaint follows a 2011 investigation by the U.S. Department of Justice over the state’s use of adult care homes and other institutional settings as the default housing placements for people with mental health disabilities. That investigation found North Carolina failed “to develop a sufficient quantity of community-based alternatives for individuals with mental illness unnecessarily and indefinitely confined to adult care homes.”

Malea Williams came to the Legislature in 2016 from Wilmington where she works with the disAbility Resource Center. Photo credit: Rose Hoban

Former DHHS Secretary Al Delia signed a consent agreement with the DOJ in August 2012, which called for the state to spend tens of millions of dollars on developing community housing alternatives for people with mental health disabilities.

But the implementation of the Transitions to Community Living Initiative has been slow and inadequate. Instead, being integrated into their communities, thousands of people with all types of disabilities have landed in adult care homes, intermediate care facilities, developmental disability centers and other forms of institutional care, often against their will.

“The lack of community-based services for people with I/DD is a long-standing problem in North Carolina, and the State’s efforts to address it have been insufficient,” Smith wrote.

Over the past three years, residency rates in adult care homes, for example, have actually increased, rather than decreased.

The 1990 federal Americans with Disabilities Act prohibits discrimination against people with disabilities and states there should be equal opportunity for people with disabilities in jobs, state and local government services, public accommodations, commercial facilities, and transportation. But more pertinent to the Disability Rights case, the ADA requires that people receive services “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”

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Rose Hoban

Rose Hoban is the founder and editor of NC Health News, as well as being the state government reporter. Hoban has been a registered nurse since 1992, but transitioned to journalism after earning degrees...

One reply on “Lawsuit Alleges State Neglected Needs of Intellectually/Developmentally Disabled”

  1. Thank you DRNC! We spent $ 5,000 plus to fight my son’s case in 2013 were they denied him Innovations services because he could not read and write. They used the term “Not Medically Necessary”. We won but they never addressed violating his civil rights or ADA rights. It was summed up as just a ” glitch”.

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