RALEIGH — Developmentally disabled North Carolinians could slip through the cracks as mental health services across the state transition into a new health care delivery system.
Advocates for developmentally disabled patients fear that thousands of patients might lose case management services as local and regional mental health organizations (often called local management entities, or LMEs) begin implementing a managed care system of health care delivery. Time is running out for lawmakers to make the statutory changes if they want to fix the problem before the transition is complete the first of the year.
People with developmental disabilities include people with autism, cerebral palsy, Spina bifida, Down’s syndrome, and intellectual disabilities.
A law that passed last year changes the delivery of patient care to Medicaid recipients of mental health, developmental disability, and substance abuse services. The effort seeks to expand a service-delivery model employed by Piedmont Behavioral Health Services, headquartered in Cabarrus County, statewide.
Lawmakers hope the change, when complete, will result in increased efficiencies for the Medicaid-related services.
The primary emphasis of the new law was to improve services for the mentally ill. But in what may have been an unintended consequence of the legislature’s actions, advocates for the developmentally disabled worry that the patients and families they serve may have been overlooked.
Julia Adams, assistant director of government relations for The Arc of North Carolina, said that case management is key to making sure developmentally disabled patients and their families get the health care and support services that they need.
Case managers are “experts in understanding the needs of this specific community and how to best help this community,” Adams said, noting that a lot of people with developmental disabilities often have difficulty figuring out the complexities of their care on their own.
Adams said that approximately 6,000 such patients could slip through the cracks.
While a handful of area mental health organizations already have made the move to the new managed care model, most have not. However, state law requires all of them to shift to the new model by Jan. 1, 2013.
Patients and family members already are reporting problems they’ve encountered from the changeover in some parts of the state.
Jane Lindsey, whose 21-year-old child suffers from a number of disorders, has encountered problems getting a psychiatrist for her child.
Lindsey’s family took guardianship of their child when she was 4 months old.
“She was a shaken baby,” Lindsey said. The adult child sees about 12 different specialists. “She has three immune disorders,” Lindsey said. “At times, she can have a list of 40-plus medications.”
Lindsey, who lives in Hendersonville, said that on Feb. 14, when her child was headed home from a doctor visit, she experienced a panic attack. Despite having numerous meetings with and calls to area officials, Lindsey has been unable to get a psychiatrist to see her child for clinical intervention.
Procedures stipulate that the managed care entity must authorize such services before they are delivered.
“According to her neurologist, if she continues to have these panic attacks, she will die,” Lindsey said.
Targeted management had been provided by for-profit and nonprofit private organizations. Those businesses will close down, Adams said. She said 150 people within the Arc of North Carolina will no longer work for the private sector.
Jim Jarrard, deputy director of the state Division of Mental Health, Developmental Disabilities, and Substance Abuse Services, said that responsibilities of former case management workers will be divided among care coordinators and community guides.
While the new coordinators and guides won’t be as “robust” as the former case managers, Jarrard said that “they certainly help you navigate the system.”
Jarrard said he understands the concerns that have been raised about case management. “We’re trying as hard as we can to try to allay fears,” Jarrard said. “I think change is always hard for people.”
Adams counters that fear of change isn’t the problem. “People are actually getting into crisis because the system is not functioning,” Adams said.
Adams said she is working with lawmakers in an effort to make sure developmentally disabled patients get the treatment plans and service referrals they need.
Two legislators — Sen. Ralph Hise, R-Mitchell, and Tom Murry, R-Wake — said they are working on legislation to resolve the problem.
“We know what we want to do,” Murry said. “We’re just trying to see if we can get it done in the time remaining.”
“We’re in the drafting process,” Hise said. But he noted that Senate committees are shutting down and legislative leaders have set a June 19 target date for adjournment.
Adams said the changes need to be made this session, and if legislators believe it’s a priority, it can be accomplished.
“I think they need a green light from the leadership,” Adams said.
If they wait until the 2013 session, which would start in late January, case management services would have already ceased, she said.
“By the time the fix comes, there may be nobody left to work with these people,” Adams said.
Barry Smith is an associate editor of Carolina Journal.