Without a lawsuit known as Thomas S., Zachary likely would have spent his life in a state institution with no hope of ever returning home.
In the 1980s, advocates for people with disabilities found about 500 patients with both mental illness and developmental delays languishing in mental institutions. Doctors administered sedating psychotropic drugs and didn’t bother with traditional talk therapies because of their cognitive limitations.
Lawyers filed the lawsuit, and eventually a judge ordered that the state treat those with both mental illness and developmental disabilities and try to move them out of institutions. Over the next decade, the lawsuit freed nearly 1,400 patients from institutions and brought them back into the community with the services they needed to live independently.
In recent years, though, that care has been scaled back as the state works to keep Medicaid costs under control. In 2009, the state spent $24 million in addition to Medicaid funding to provide extra services to 567 people living in the community with both mental illness and developmental disabilities. That amount dropped to $9.6 million in 2011, when 235 people were served.
Successfully caring for those with complex needs in the community continues to stress the state, particularly with limited funding. John Rittelmeyer, a lawyer with Disability Rights North Carolina, helped file a new lawsuit in 2010 on behalf of several people with mental illnesses and developmental disabilities who lost their services because a managed-care company contracted by the state cut reimbursement rates. The case is expected to go to trial next month.
‘Nobody wants to take him on’
Rittelmeyer fears the problem will worsen as people such as Zachary age. He estimates up to 2,000 adolescents in North Carolina suffer from both mental illness and developmental disabilities.
Taking in a child with complex needs is a risky business for the private facilities that the state reimburses to care for youth with mental illness. “Nobody wants to take him on,” Rittelmeyer said. “It will be a losing proposition financially. … The best you can do is put together a slap-dash treatment for a limited period of time, then you are back in crisis mode. Zachary careens from one crisis to another.”
Rittelmeyer’s team at Disability Rights helped Cathy and Latham Hamner file a civil-rights complaint on Zachary’s behalf, saying the state didn’t ensure an adequate mix of community-based services to help their son. The complaint has been on hold while Zachary has been away at a psychiatric residential treatment facility in South Carolina.
Rob Robinson, chief operations officer for Alliance Behavioral Health Care, the managed care organization the state designates to orchestrate mental health and substance abuse services to those on Medicaid in Wake County, admits the company doesn’t yet have the right mix of services to meet the needs of children like Zachary.
Alliance took on its responsibilities for Wake, Durham, Johnston and Cumberland county patients in February. Robinson said the agency is still trying to assess the gaps in its network. In these counties alone, 19 youth are being treated in psychiatric residential treatment facilities out of state, down from 31 last summer.
Finding a formula
A new psychiatric residential treatment facility for youth opened in Garner last summer and relieved some of the need. But this facility, Strategic Behavioral Center, treats children with mental illness who have an IQ above 70, which would exclude adolescents with developmental delays such as Zachary.
Dave Richard is the state Department of Health and Human Services’ new head of care for those with mental illnesses, substance abuse problems and developmental disabilities. He has traveled the state talking with families about services they need but don’t have. “We’ve looked at our mental health system in 100 different ways in the past 10 years,” said Richard, who formerly led the disability rights advocacy organization ARC of North Carolina. “I think we’re starting to know what we need. Our challenge is to organize a plan to have a logical and sustainable effort to put this in place.”