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A big step forward for children with complex needs

VICKI SMITH
Guest Columnist

Let me tell you about a girl I’ll call O.B. Her story exposes a lot of what’s wrong with North Carolina’s behavioral health system.

O.B. has moderate to severe intellectual disability and autism, as well as intermittent explosive disorder. She is non-verbal and has a history of aggression, self-injury, and property destruction. She is what the behavioral health system calls “a child with complex needs,” meaning a child with an intellectual and/or developmental disability plus a mental illness.

She has had Medicaid since the age of six, and under federal law the state is obligated to provide her with treatment for her conditions and whatever services she needs to grow and develop while living safely at home.

But that hasn’t happened. Instead, O.B. has been cycling in and out of hospitals and other institutional settings for years. Repeatedly, she was sent home without much-needed supports. Then she would explode, and her mother would be forced at call 911, starting another round of hospitalization and institutionalization.

During one of the times she was out of the hospital, O.B. suffered severe, life-threatening injuries, allegedly at the hands of a residential provider. She had blood in her abdomen and two broken bones in her back. Part of her intestine was removed because of the injuries she sustained. The staff of the residence now faces charges of attempted murder and felony child abuse.

O.B.’s story was one of those cited in Disability Right NC’s complaint against the state on behalf of children with complex needs. It illustrates some of the systemic problems with how North Carolina provides behavioral health services.

In 2001, the state took management of its behavioral health system away from the state and county mental health authorities and gave it to a group of specially created organizations called local management entities/managed care organizations (LME/MCOs). Today, there are seven LME/MCOs covering different areas of the state.

Even though both mental health services and intellectual/developmental disability services are provided through LME/MCOs, the services themselves are administered in separate silos. North Carolina has definitions for every Medicaid service available. Some are for intellectual or developmental disability, and some are for mental illness. But when someone needs services from both silos, things get tricky.

For example, O.B. received Medicaid through something called the Innovations Waiver, which provides services to people who have intellectual and/or developmental disabilities with the goal of keeping them out of institutions. But the waiver does not provide mental health services.

Because the services are separate, the professionals treating children have become more specialized. Providers who are used to serving children with autism quickly become overwhelmed dealing with a child in the midst of a mental health crisis. But sending a non-verbal child like O.B. to a mental-health provider who specializes in talk therapy isn’t going to help either.

Creating a plan to help a child like O.B. takes creativity and expertise. But North Carolina’s mental health system doesn’t provide LME/MCOs with the necessary flexibility and most of the care coordinators and other staff at the LME/MCOs lack the necessary cross-training.

Part of Disability Right NC’s goal in filing a complaint and reaching a settlement with NC DHHS was to make sure LME/MCOs have the tools they need to craft those solutions.

First, the settlement requires that DHHS develop and implement a process that is uniform for identifying and assessing children with complex needs. That will make sure that all seven LME/MCOs are using the same standard. And the assessments must be conducted by a professional with experience in dealing with people with dual diagnoses. There are only a handful of clinicians in North Carolina who qualify, but their expertise is essential to figuring out how to help these kids.

Then, DHHS promises to make sure any child diagnosed with complex needs gets the services he needs. The state will do this by making sure that everyone involved in the child’s care is communicating and by providing case management, a service the state substantially eliminated several years ago. A case manager who has detailed knowledge of the services and supports available is an invaluable asset to parents or guardians trying to figure out how to help their child.

Under the settlement, the state has also committed to opening an outpatient clinic, staffed by experienced clinicians, to serve children with complex needs.

If fully implemented, these measures will make a huge difference for hundreds of children in North Carolina who have complex needs. And perhaps, if the state can handle the considerably complexity of helping these children, then maybe North Carolina will step up and make sure all children with disabilities get the services and supports they need.

Vicki Smith is the executive director at Disability Rights North Carolina.

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