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Court ruling says NC is illegally segregating people with disabilities

News & Observer - 2/8/2020

Feb. 7--RALEIGH -- North Carolina has been illegally segregating people with intellectual and developmental disabilities in institutions or putting them at risk of institutionalization, a court ruled Thursday.

The lawsuit was filed by Disability Rights North Carolina in 2017 against the state, the N.C. Department of Health and Human Services and Secretary Mandy Cohen.

It argued that insufficient state funding and inattention to disabled people's needs are causing many to be placed in an institution or live without the services they require.

"This order is the first step, and we will be actively working toward a remedy that helps more people with I/DD get the support they need in the home they choose, said Virginia Knowlton Marcus, CEO of Disability Rights NC, in a press release. "We hope that the State and DHHS will commit to do the same."

The nonprofit group filed the lawsuit on behalf of five people, including a woman who the lawsuit said had been forced to live in a state developmental center because her parents could not find community care providers for her. Two others lived outside institutions but had services being cut.

The fourth person lived in a Morganton group home despite his wish to live in Raleigh near his family, and the fifth person was getting inadequate treatment in an adult care home, according to the lawsuit.

Innovations Waiver waitlist

Disability Rights NC said the judicial order declares the state and DHHS have violated a legal mandate that people with disabilities may not be forced to live in institutional settings in order to get the services they need.

In most states, people with disabilities apply for a Home and Community Based Services waiver, created to meet the long-term needs of people who don't want to live in a state institution. The waivers are funded through both federal and state money. In North Carolina, the waiver is called the Innovations Waiver, which around 13,000 people use.

However, there are also more than 12,000 people waiting for the waiver, and that number is continuously growing, The News & Observer recently reported. State budgets proposed by the legislature or the governor would add 150 to 1,000 new waiver spots.

The Innovations Waiver pays for services overseen by managed care organizations. N.C. lawmakers cut funding to managed care organizations by $458 million from 2015-18, saying the organizations were saving too much money instead of investing in their communities.

But state Rep. Verla Insko said the cuts are hurting people, instead of holding the managed care organizations accountable.

"I just don't think Republicans understand how care organizations operate," the Orange County Democrat said. "They're billion dollar organizations, and they require a certain amount of savings."

Charlotte Rash, whose daughter Connie was one of the plaintiffs in the suit, said she's "extremely excited" about the possibility of substantial changes to the N.C. disability services system.

Rash said that in the late 2000s the waiver system was changed so that folks who received a certain amount of financial support and care had their care plans reviewed every 90 days. Connie had been receiving the services for a decade by then, and she began getting briefly denied services after every review.

Rash hopes the court ruling changes the 90-day rule to help stabilize her daughter's finances and services, which include just over 17 hours of support staff per day.

"The amount of stress from reviews four times a year, and then getting denied, it's almost unbearable," she said.

NC Persons with Disabilities Act

The judge's ruling said North Carolina violated the N.C. Persons with Disabilities Protection Act, which aims to "ensure equality of opportunity, to promote independent living, self-determination, and economic self-sufficiency." The Act became law in 1985.

Title 2 of the Americans with Disabilities Act also mandates people with disabilities be given opportunities to live their lives integrated, like those without disabilities.

The court will decide later how the state and DHHS will have to remedy the situation.

Corye Dunn, director of public policy at Disability Rights NC, said a full remedy would mean people with intellectual and developmental disabilities would be able to choose where they want to live and the supports they need.

"People who already live in the community would not be faced with the constant threat of institutionalization," Dunn said. "And people already in institutions could choose to leave and build a life elsewhere."

Richard Edwards, regional vice president of Community Based Care -- a parent company of disability service providers -- said part of the issue lies in North Carolina not keeping funding for services on pace with a growing population.

"North Carolina continues to rely on state-operated facilities more than other states of comparable size," Edwards said. "I think the question is, why is that?"

"As long as we're staying behind the amount of unmet needs, we'll never fix the large waiting list. We have to be getting ahead of that."

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