RALEIGH, N.C. – In 2007, three young men died within two weeks of being discharged from the North Carolina psychiatric facilities where they had gone for care.
Two of them overdosed in motel rooms and the third committed suicide.
Disability Rights North Carolina, a nonprofit funded mostly by the federal government, released a full report on the incidents in April 2008, shedding light on patient-discharge policies in mental-health facilities in the state.
The study prompted representatives from psychiatric facilities and state services to sit down together and begin discussing ways to fix the problem.
“We are responsible for protecting the rights and advocating for people with disabilities,” says Vicki Smith, executive director of Disability Rights N.C. “We have the ability to access records, clients and facilities if we have probable cause that abuse or neglect is going on.”
Though the North Carolina mental-health system underwent reforms in 2001, new legislation still does not fully protect the rights of people with disabilities, Smith says.
“There is a lot of confusion about the lines of accountability,” Smith says.
Disability Rights N.C. seeks to transform the system by speaking to state lawmakers on behalf of the disabilities community.
Once known as Carolina Legal Assistance, the organization underwent major changes when it became North Carolina’s sole protection-and-advocacy system in July 2007.
The idea for creating protection-and-advocacy systems was born in 1975, when television crews documented rights violations in New York state mental-health facilities.
“There was no treatment going on,” Smith says. “Some patients were not even clothed.”
To prevent future abuses, the federal government created the protection-and-advocacy system, giving each state government the task of appointing one organization to fulfill this function.
Though North Carolina’s protection-and-advocacy programs originally fell under the umbrella of state government, the disabilities community lobbied successfully to have the duties taken over by a nonprofit.
The community believed that having the North Carolina government run both the mental-health system and the advocacy system would create a conflict of interest.
“Many times we have to make sure the state is fulfilling its responsibility,” Smith says. “We make sure investigations are done in a timely manner, that they enforce state law and regulations, and that they treat people with disabilities and mental illnesses as credible witnesses.”
Before changing its name and its mission, Disability Rights N.C. had a budget of $300,000.
Since then, the budget has ballooned to over $3 million, and the staff has grown to 36, six times its original size.
Though 92 percent of its funding comes from federal grants, the organization gets some support from individual donors and foundations.
Past funders include the Z. Smith Reynolds Foundation, IOLTA (Interest on Lawyers Trust Accounts) and the Governor’s Crime Commission.
On Dec. 1, the organization launched its first direct-mail campaign, which so far has raised almost $10,000.
The campaign needs to raise about four times that much, Smith says.
“There are restrictions on our federal dollars,” including prohibitions on lobbying and starting grassroots initiatives, she says. “We need to increase the amount of discretionary money we get that the board has total control over.”
Disability Rights N.C. runs seven programs, each of which addresses a particular need among the disabilities community, Smith says.
The largest, devoted to developmental disabilities, has a budget of $1.3 million, while the second-largest, dedicated to mental health, has a budget of about $1 million.
Other programs deal specifically with protecting rights to vote, find and keep employment, use technology, gain access to buildings, and other activities most people may take for granted.
“We do a lot of work in helping people retain housing, or protecting the rights of individuals to keep service animals,” Smith says.
Some landlords and schools unknowingly discriminate against the disabled by labeling service animals as prohibited “pets,” she says. When that happens, Disability Rights N.C. tries to educate them about the crucial services these animals provide.
Though the majority of conflicts are resolved through mediation, 17 have gone to court. Disability Rights N.C. and its clients have a success rate between 60 percent and 70 percent, Smith says.
The organization conducted more than 3,000 information sessions and referrals in its first fiscal year ended Sept. 30, 2008.
Of the organization’s 17 board members, all but one has a disability or a family member with a disability. Being able to see from the perspective of the disabled community helps board members build relationships and communicate more effectively, Smith says.
“We actually have a waiting list of people who want to be on our board,” she says, “because people are generally excited about what we’ve been able to accomplish.”