A while ago, my friend fell and broke her hip and knee. What happened next was exactly what should happen in crisis. She was transported to a local emergency room and immediately treated. She received appropriate care until she was transferred to a rehabilitation center. Once there, she received treatment designed to help her regain her mobility and ultimately return home. And while there was a ton of paper work, there was never any question that she would get the necessary treatment.
Compare that story to one about a young man diagnosed with post traumatic stress syndrome. His parents called the police when he became violent and threatened to kill them. When the police arrived, the young man was angry and out of control. He was subdued, handcuffed, put in the back of the police cruiser and taken to the local hospital. Because there were no beds available at any of the State's psychiatric hospitals he stayed handcuffed to a stretcher in the emergency department with a 24-hr. police detail. Finally, after 96 hours without treatment, he calmed down and was discharged but his elderly parents were afraid to let him come home. His options – live on the streets – homeless – or find a bed in an adult care home (ACH). Either choice left him without treatment for his mental illness increasing the chance that it would happen again.
Sadly, this is not an isolated story. Over 6,000 adults with mental illness live in ACHs in North Carolina. And that number only reflects people with a known mental illness. There isn't an accurate count of the number of people who would rather be homeless than live in an institutional setting like an ACH or who are not receiving any services at all. With extreme cuts in funding, that number is likely to grow and include more people with other types of disabilities.
So why aren't there better options? The quick answer is lack of funding. But there's clearly more to the story than that. Lots of other important solutions must be identified.
In addition to allocating more resources, we must determine exactly what needs to be done. What would services in the community look like that would prevent the cycle of crisis situations described above? Are crisis services adequate and available across the state? What response would meet the needs of people with disabilities in crisis and be in compliance with the Americans with Disabilities Act (ADA)? How do we make funding for community based services a priority in the state's budget -especially since the state's revenue projections for next are expected to be worse than this year? How do we get the legislature to stop cutting services and develop a more balanced solution?
To find the answers, our staff at Disability Rights North Carolina reviewed death and incident reports at ACHs, and, with the help of UNC-Chapel Hill law students, visited over a dozen adult care homes throughout North Carolina. What we found confirmed our suspicions in vibrant detail: adults in their twenties living with adults in their seventies in ACHs; ACHs where 100% of the residents have a serious mental illness but receive no therapeutic or rehabilitative services; and deplorable institutional living environments.
It is no surprise to mental health consumers, their families and advocates, that we were able to document a fractured system of care. Our work is certainly not the first to document that the system is broken. But rather than just issue another report, we also filed a complaint with the U.S. Department of Justice (DOJ). We have asked that they investigate the State's non-compliance with the community integration mandate of the ADA as evidenced by the failure to provide a comprehensive community based system of care.
North Carolina has had more than ten years to create a real strategy to achieve a comprehensive community based system instead of looking at institutional-based care as the solution. The disability community has waited long enough for the State to develop a meaningful, detailed plan. Perhaps with the Department of Justice's intervention, a real plan can be written.
With stable housing, long-term support services like peer support or psychosocial rehabilitation, medication management and supportive employment, the cycle of institutionalization can be broken. Our state can get to a point at which the response to a mental health is at least as good as it is when there is a physical health crisis. Let's not wait any longer to get about the business of making this a reality.
Vicki Smith is the Executive Director of Disability Rights NC