Disability Rights NC speaks up for 2 million in North Carolina

Disability Rights NC believes that everyone with a disability deserves a voice.

“There are about 2 million people in North Carolina with developmental disabilities, and we consider all of them our clients,” said Disability Rights NC Director of Development Elaine Whitford.

DRNC is a protection and advocacy agency established in 2007 by then-Gov. Mike Easley that serves as a watchdog for those with disabilities in the state. DRNC keeps a watchful eye on institutions that provide or fail to provide services to people with disabilities whether they’re in a hospital, school, jail, workplace or group home. They provide legal assistance, investigate complaints of abuse, neglect and deaths in institutions, and monitor facilities to identify and address issues. Their federally mandated status gives them what Whitford calls the “superpower” of investigative authority.

“These facilities have to let us in to inspect and monitor,” she says.

Findings of abuse or neglect are met with litigation, public reports with recommendations or sometimes just a call from one of the group’s attorneys or other advocates. DRNC fields nearly 4,000 calls each year, acting as a link between clients and the services that the state is mandated to provide.

One such call came from Jeff Cook in July. His daughter, Michelle, has a form of muscular dystrophy. The adult care facility where she was staying sent her for a psychiatric consult in April after a dispute between her and her caregivers. Even though UNC Hospitals released her after finding no psychiatric concerns, the facility refused to allow her to return.

Michelle spent the next 90 days in the psychiatric ward at UNC Hospital. Her father spent the next 2½ months searching for a place for his daughter.

“I couldn’t find a place right off the bat for her because she’s on Medicaid and she’s 37 years old,” Cook said. Also, many facilities are simply not set up to serve young people with physical disabilities, he said. Ideally, Cook wanted his daughter in a home setting with 24/7 care.

Finally, he called Disability Rights NC. An attorney with the group suggested applying for a waiver with Alliance Health, the local management entity that is responsible for managing, coordinating, facilitating and monitoring the provision of mental health, developmental disabilities and substance abuse services in Durham, Wake, Johnston and Cumberland counties. Within two days, a critical response team with Alliance was at the hospital meeting with Cook and his daughter.

“It was just like everything was lifted off my shoulders. There was hope here again, because we’d pretty much run out of hope,” Cook said.

Michelle is back in a home-like setting and her father says they are working on getting her back out into the community. “It’s a lifetime placement, so she can’t be kicked out and her funding can’t be pulled,” he said.

Ninety percent of DRNC’s work is legal advocacy and funded by federal grants, while 10 percent of the work is lobbying activities funded by private donations, according to Whitford. The group also hosts an annual conference at the Friday Center in Chapel Hill attended by disability rights stakeholders including policymakers and social workers as well as those with developmental disabilities themselves.

“One year, an administrator with a vocational rehabilitation center wondered aloud why everyone complains about the centers,” Whitford said. “A gentleman with developmental disabilities spoke up and said, ‘Let me tell you my story.’ ”

That’s the kind of connection and self-advocacy that DRNC encourages for people with intellectual and developmental disabilities. Whitford says litigation is often a last resort.

DRNC employs 35 people across the state. Many are advocates who visit institutions. The group tackles cases big and small – from advocating for individuals like Michelle to litigation that prompts systemic changes.

This year, the group filed a lawsuit against the state Department of Health and Human Services alleging that current practices are forcing thousands of citizens with intellectual and/or developmental disabilities to remain in institutions or segregated from their families and communities. DHHS did not respond to recent inquiries but said in a statement in May that it takes Disability Rights’ concerns seriously and is reviewing the allegations.

“DHHS is committed to meeting the needs of people with I/DD (intellectual/developmental disabilities) and to ensuring they have access to the services and supports necessary to help them meet their individual goals and needs,” the statement said.

And last year, DRNC filed a complaint against the state Department of Health and Human Services that called on the agency to address its legal obligation to provide services outside of hospitals and institutions for children with developmental and/or intellectual disabilities and a mental illness. In October 2016, the parties reached a settlement that will provide greater access to services that will keep children out of institutions.

This story was originally published November 20, 2017 at 9:17 AM with the headline "Disability Rights NC speaks up for 2 million in North Carolina."