The disgraceful treatment of the mentally ill
Published November 27, 2015
By Tom Campbell
by Tom Campbell, Executive Producer and Moderator, NC SPIN, November 27, 2015.
The U.S. Department of Justice should butt out of North Carolina’s mental health problems, since it is partially responsible for getting us into the situation we now face. If you’ve never had family member or friend with mental illness be thankful. I can tell you first-hand that the way we treat many of those with severe mental illness today is unconscionable.
It was a federal court decision that determined that the states should get out of housing the mentally ill, favoring community based care instead. North Carolina began mental health reforms in 2001, reducing or eliminating beds in state-operated mental health hospitals. The concept of caring for patients in local hospitals or community support agencies may have been good in theory but it was a train wreck in practice. Local hospitals didn’t have and weren’t willing to dedicate sufficient numbers of beds to mental patients. Local or regional health agencies didn’t have established services; even worse, there were too few psychiatrists available in many regions.
Most families are not able to deal with these patients either, no matter how much they might love them. At some point the family has exhausted so much financial and emotional capital they simply can’t continue without severely affecting the rest of the family. With no place to take them many mentally ill patients end up on the streets or in jail due to their unstable conduct. The best solution available is to turn to adult care homes.
The Supreme Court has said that states treat those with disabilities as if they were “incapable of or unworthy of participating in community life.” Under duress, North Carolina made promises to provide community-based services wherever possible. The well-intentioned group Disability Rights correctly asserted that North Carolina wasn’t living up those promises. After a yearlong investigation, in 2012 the U.S. Department of Justice forced the state, along with 19 other states, to sign a settlement agreement, setting compliance benchmarks. That agreement required our state to offer people with serious mental illnesses more housing subsidies and job training, using MCOs or managed care organizations that contracted with the state.
Because the mentally ill have so few effective advocates and because of state budget problems our legislature has woefully underfunded care for them. The N. C. Department of Health and Human Services has dealt with one crisis after another, a long litany of problems including IT programs, Medicaid cost explosions and personnel turnover, rendering it ineffective. There is also evidence the mentally ill have not been a high priority at DHHS. The MCOs, often for-profit groups, have not been as effective as envisioned and have been poorly supervised.
Strong-arm tactics by the feds, unachievable target goals, poor administration and insufficient funding aren’t a formula that will provide the care desperately needed by our mentally ill. To be sure there are many who can live alone and hold jobs, but there are large numbers who cannot care for themselves and must live in group homes.
Now is a time to stop the finger pointing and the blame game, substituting instead honest discussion, cooperation, compassion and realistic expectations. If a society is judged by how it treats those unable to care for themselves we owe the mentally ill nothing less than our best efforts.
November 28, 2015 at 2:15 pm
Laurie Coker says:
Dear Mr. Campbell,
I respectfully wish to point that while you suggest we stop the finger-pointing and the blame game, you begin your article blaming a federal agency for the current state of things related to transfer of people held in assisted living settings. You seem to think these are necessary and that they must be good alternatives because of how poorly people with mental illness are treated in our state. Clearly, you have not visited many publicly funded adult care homes or group homes. There are few exceptions to the rule that they are not motivated to provide quality living and activity that help people to live a meaningful life.
I advocate as the director of NC CANSO, North Carolina Consumer Advocacy, Networking, and Support Organization, a state level consumer advocacy organization and as a mother who has lost a precious son through suicide and who has another who has been quite a success in spite of Asperger's Disorder. Neither son's situation result involved our system much because it was simply so hard to access the right kinds of services in a timely way and because the depth of societal stigma has pervaded how systems reach out to and help people--even though it would cost us less if we had more personal engagement and outreach with the right kinds of services.
In the estimation of most families and certainly most consumers, our state has developed a crisis based system. Continual crises are what we expect and crisis care is what we fund. We continue to fund new ways to respond to crises and ensure we have enough hospital beds. There have been years of coverage of crisis needs by our local newspapers. But this is extremely expensive, and this was not a problem caused by the federal government, but by the state of North Carolina.
The most troubling part of all this is that there are those who have crises too frequently because they cannot get their footing after illness (absence of the right services and supports again--like adequate peer services and true case management--both lacking in our state while costing far less than high intensity clinical and crisis services). THESE are the North Carolinians who have been fed to a large developed industry whose infrastructure was developed by a handful of North Carolina legislators in the 90s and in the first decade of this century! A few of these are still seated in our current legislature, but most have moved on. One has done time in prison because of similar behaviors with a different industry than this facility industry.
We who have psychiatric labels must be seen as people first and must be valued as citizens fully. If our full humanity is dismissed, our state will continue to force institutional isolation and mental health and health decline. This is not only costly to the lives of those in these stagnant institutions, but it is very costly to taxpayers.
November 30, 2015 at 8:55 pm
Gerry Akland says:
I want to thank Mr. Campbell and NC Spin for the insightful perspective of the woeful treatment of the mentally ill in North Carolina. There are far too many things wrong with the current mental health system for most of us to understand, let alone navigate in times of need. Furthermore, the system lacks stability with continual changes to procedures, service definitions, merging of Managed Care Organizations (MCOs), and funding available for many of the services needed to address the most complex problems.
Mr. Campbell has addressed the key issue that must be of highest priority -- housing. The DOJ settlement with the State has complicated the housing landscape with a requirement to move thousands of those who have mental illness living in adult care homes to independent "supervised" housing in the community. Based on the findings of the independent reviewer, after 3 years the State has successfully relocated only 400 people (about 50% of the target), although another 100 people (25%) tried living independently and failed. Of those who failed, approximately 20% died, others were evicted (without follow-up), some moved back to Adult Care Homes, while others ended up in jail and state psychiatric beds. The reviewer pointed out that there was a lack of community services that are needed to support the people.
Without safe, affordable, supported housing, the mental health system cannot and should not expect to see mental health improvements for those living with their mental illness. With DOJ and Disability Rights North Carolina pushing to move people out of the safety and care of Adult Care Homes without first ensuring the adequacy of community supports, social interactions, transportation, and basic housekeeping and financial training, another failure of the mental health system is unfolding.
Unfortunately there are always empty beds at the county jails and state prisons that will accommodate yet another failure of the mental health system. This will be the fate for many people who just have a brain disease, unless we as a society can discuss the needs and priorities of the mental health system in North Carolina.