Caring for people with disabilities, mental illness

By Todd Cohen

[Note: This was written for Easter Seals UCP.]

RALEIGH, N.C. — Individuals in central North Carolina struggling both with developmental disabilities and mental illness are getting better care, more quickly, and at lower costs, thanks to a pioneering state-funded program of Easter Seals UCP.

Durham-based NC START Central, the Easter Seals UCP program, now has become the first of its kind in the U.S. to gain certification from the New Hampshire-based Center for START Services, which developed the model for the program.

With that certification, NC START Central has emerged as a leading provider and champion in addressing the critical needs of the nearly 6,500 individuals in 26 counties in central North Carolina who face the critical and often-undiagnosed challenge of living both with development disabilities and mental illness.

“Expertise is sorely lacking for diagnosing and caring for people who face those dual conditions,” says Jill Hinton, vice president for clinical services at Easter Seals UCP and a member of the training team at the Center for START Services that helps other states develop and operate START programs.

“As a result, many individuals with those dual conditions are misdiagnosed, do not get the care they need, and can spend lengthy and unnecessary stays in psychiatric hospitals at significant cost to taxpayers,” Hinton says.

The N.C. Department of Health and Human Services, which in 2008 was looking for a way to improve services and reduce the cost of care for individuals living with development disabilities and mental illness, selected Easter Seals UCP to create a program for central North Carolina based on the evidence-based model developed by the Center for START Services.

The Center, a program of the Institute on Disability at the University of New Hampshire, supports START programs that serve or will serve clients in 17 states and Canada.

Easter Seals UCP launched NC START Central in 2009, and each year serves over 300 individuals, who typically are referred by families, caregivers, residential group homes, hospital emergency rooms, law enforcement agencies, and other groups.

NC START Central acts as a broker and provider of services. It also serves as a consultant to other agencies, helps coordinate and link with their services, and works to raise awareness about people living both with developmental disabilities and mental illness. Its goals are more accurate and speedier diagnosis, a more coordinated and efficient system of delivering services, more effective care, and lower costs of care.

“Individuals living with developmental disabilities and mental illness should get the right services in the right place at the right time with better outcomes at lower costs,” Hinton says.

Operating with an annual budget of $1.1 million, NC START Central fields a team that includes four social workers who help coordinate services among multiple agencies that serve people living with those dual conditions. The team also includes a psychiatrist and a psychologist.

Many individuals with those conditions can find themselves in emergency rooms, most often because of aggressive behavior that may trigger the involvement of law-enforcement agencies. If emergency room staff then diagnose mental illness, for example, and suspect the individual also may have a developmental disability, they will contact the NC START team.

The team can provide a thorough assessment, and then link the person to other agencies that can provide appropriate support and services. The team continues to monitor the individual, as well as the care and services the individual receives. It also can provide expertise and support for other agencies serving the person.

NC START Central also operates a four-bed Resource Center in Durham that provides therapeutic crisis support for individuals with intellectual or developmental disabilities, and keeps them out of hospitals.

NC START Central received its certification based on completing extensive training, including 55 hours of video and taped courses for each of its team’s four coordinators, as well as on-the-job training the coordinators received while working with clients.

The START model is a “collaborative linkage” model, so the team also had to demonstrate a team approach using clinical and medical expertise, demonstrate effective outreach into the community, and demonstrate positive outcomes. It also had to show it was using and had mastered the model’s evidence-based practices and its approach to linking support systems. 

In the 25 counties NC START Central serves, nearly 22,000 adults live with intellectual or developmental disabilities. Based on national trends, an estimated 20 percent to 35 percent of those adults, or nearly 6,500 individuals, also live with behavioral, mental or personality disorders that require specialized services.

While the state provides $1.1 million to cover the annual operating costs of NC START Central, those funds represent about half of the cost needed to effectively address the needs of individuals in central North Carolina living both with developmental disabilities and mental illness.

The cost to NC START Central of serving an individual totals about $6,000 a year. That is a fraction of the costs of psychiatric hospitals or the frequent use of emergency rooms.  When NC START Central receives crisis calls, the team is able over 75 percent of the time to support the system to keep the individuals in their current setting.  That eliminates the need for services that are more expensive and often inappropriate.

“Individuals with this dual condition who are misdiagnosed have difficulty accessing appropriate supports in a timely manner and can end up in a psychiatric hospital or utilizing expensive emergency services,” Hinton says. “For a fraction of the cost of hospitalization for people who may not even need to be hospitalized, NC START Central can improve the quality of their lives and the care they receive.”

NC START Central is one of three START programs in North Carolina that have served over 1,200 individuals since 2009. The other two programs are based in New Bern and Statesville and operated by RHA Health Services.

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