Hundreds of children in North Carolina with complex developmental and mental health needs will soon have access to better services and supports after the NC Department of Health and Disability Rights NC developed a plan to meet the needs of these children.
The plan was announced late last week, but it took nearly two years of negotiation between Disability Rights NC’s attorneys and the State, and the work is far from over. Below, Diane Morris with Disability Rights NC shares one boy’s story and how the state’s lack of a system to support him has impacted his formative years.
By Diane Morris, Disability Rights NC
Disability Rights NC’s attorneys told the state Department of Health and Human Services that the current situation was unacceptable and illegal. They sent what’s called a demand letter to the State, which initiated nearly two years of negotiations. Finally, last week, the State agreed to a settlement that will make sure these children receive the services they need.
K.B. has autism and Smith-Magenis Syndrome, a genetic disorder that affects many parts of the body and causes intellectual disability. He has also been diagnosed with sleep disorder, conduct disorder, and impulse control disorder. He can be physically aggressive, destroying property and hurting himself and others.
Since about the age of nine, K.B. has been cycling in and out of hospitals. Each time, the hospital works to get him stabilized and discharges him. But then the State struggles to provide him with the community-based services and supports he needs, so he ends up back in the hospital.
K.B. receives Medicaid because of the severity of his disabilities, and his parents have tried to find the services he needs through Medicaid providers. But North Carolina’s mental health system is severely underfunded. Finding trained professionals to help kids like K.B. is often a needle-in-a-haystack scenario. In fact, depending on where the child lives or how severe his needs are, the needle simply may be non-existent.
In addition, North Carolina’s mental health services and developmental disability services are separate systems, which means efforts to help a child like K.B. can get bogged down in a bureaucratic mess.
Hundreds of children in North Carolina who have complex behavioral needs—an intellectual or developmental disability and a mental illness—are in this situation. For those kids who receive Medicaid, federal law requires North Carolina to provide them with mental health services to diagnose and treat their conditions. These children are supposed to get those services in their community—meaning while they’re living at home, in a group home, or in some other place that is not an institution. Because the system of services is in such bad shape, many of these kids have suffered through endless crises and hospitalizations.
Federal law requires every state to have a P&A, and that organization works to protect the rights of people with disabilities.
Now Disability Rights NC will keep an eye on the State to see that it lives up to its promises. Monitoring the implementation of agreements like this one is an important part of what Disability Rights does. These children can’t advocate for themselves, and few if any families have the resources to take on the State.
That’s why the federal government mandated the P&A system. Because vigilance is essential. And because without Disability Rights NC, there would be no one to fight for North Carolina’s most vulnerable kids, like K.B.