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.

Easter Seals UCP mulls strategy to offset Food Lion loss

By Todd Cohen

RALEIGH, N.C. — Since 1991, Easter Seals UCP has raised over $36 million through Shop & Care, a cause marketing program it created and operated in partnership with Food Lion.

This year, the effort generated $3.8 million for Easter Seals affiliates in 10 states, including over $2 million for Easter Seals UCP.

That total represents 40 percent of the $5 million the nonprofit generates each year through private contributions to support its $86 million annual budget.

But after this year’s campaign, which was held in February in Food Lion stores in 10 Southeastern and Mid-Atlantic states, Easter Seals UCP learned Food Lion was dropping out of the partnership as part of a new corporate giving strategy.

“Easter Seals is a wonderful organization with many contributions to the community,” says Christy Phillips-Brown, director of external communications and community relations for Salisbury-based Food Lion.

Food Lion in recent months has begun to focus on a new community strategy “that is consistent with our business,” she says, and that also will “enable us to build a solution for our primary area of focus, which is food insecurity and hunger relief.”

While Food Lion will permit individual stores to participate in the Shop & Care campaign in 2014, Easter Seals UCP is working to relaunch its cause marketing strategy to try to offset the loss of its single biggest source of philanthropic support.

Easter Seals UCP, which has headquarters in Raleigh, employs 3,000 people and delivers over 3.3 million hours of support to over 20,000 individuals and their families managing disabilities and mental health challenges throughout North Carolina and most of Virginia.

The nonprofit generates most of its funds through contracts and services, largely through Medicaid and Medicare reimbursements.

Before Food Lion moved to end the partnership, Easter Seals UCP already had been working for over a year to reengineer its business model to develop strategic partnerships that focus on better connecting the clients and communities it serves to the most helpful solutions to their needs, says Jeff Smith, chief communications officer at Easter Seals UCP.

People living with disabilities and mental health challenges represent a big part the population and face a broad range of needs such as access to affordable housing, health care and jobs.

One in every four people has a mental illness that can be diagnosed, for example, and nearly 70 percent of youth in trouble suffer from a mental health disorder.

And nearly 80 percent of adults with disabilities are unemployed, with one in every four individuals with disabilities living in poverty.

To help address those needs, Easter Seals UCP is looking for possible partnerships with nonprofits and corporations that focus on those issues, says Smith, who has overseen the Shop & Care program.

“Collaboration and innovative thinking are the only way we can move the ball forward, particularly for people with disabilities,” he says.

Easter Seals, which created the Shop & Care program, is considering partnerships that would franchise or lease it to other businesses or community partners, tying the Shop & Care brand to causes such as poverty or affordable housing, rather than to individual organizations, Smith says.

Food Lion has “made a tremendous impact on what we’ve done over the years,” he says.

And he says he hopes shoppers at individual Food Lion stories that opt to run Shop & Care campaigns in 2014 will continue to support the effort.

Meanwhile, he says, Easter Seals UCP is looking for new strategies to build on its Shop & Care cause marketing program that will allow retailers, their customers and vendors, and possibly other nonprofits, to work together to address critical community issues.

“We want to continue to connect with other retailers and community partners,” he says, “in creative ways that would provide solutions to people with disabilities.”