The disgraceful treatment of the mentally ill

| November 27, 2015

Tom Campbell picture 515by 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.


Category: NC SPIN Perspectives - Opinions from NC Leaders & Organizations

Comments (2)

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  1. 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.

  2. 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.

    North Carolina has also had DHHS secretaries who knew we were misusing Medicaid dollars paying for care for these citizens in large homes—some as large as 190 beds or more! (Medicaid is not to be used except in smaller group settings of 16 beds or less.) When advocates asked for them to apply for grants that would help us to transition people from these settings, the Secretary refused. The refusal of our state to deal with this can only be owned by the leaders of this state. So the Department of Justice simply cannot be held at fault—although it should have done something far earlier because surely it saw the signs. It was the fault of North Carolina legislatures and administrations through so many years that our state became institutionalized in how it looked at people who were too troublesome for families or unattractive out in our communities. So simply put, we built an industry—one that many legislators have benefited by financially come election time and which it is assumed many family members of legislatures have invested in.

    The saddest irony is that we had many of these individuals been offered peer support and social settings in their communities where they feel safe to grow and share and learn and recover, many of these same people would not have needed the artificial settings we put them in, calling them homes. In fact, many of us with a mental health challenge have worked to recover our wellness and to contribute. But because of misunderstanding and outdated assumptions about mental health problems and the people who have them, our state’s leaders have for too long swept us under a rug and gotten by with it until Disability Rights asked for the federal government to investigate. This happened twenty years too late, but mental health advocates who represent the potential for recovery of a meaningful and productive life have celebrated the federal government stepping in—even if we are as disappointed as you may be that they had to step in to do so. But seems so much is politically motivated in our state.

    I have a friend who has just been hired by a large corporation to develop a holistic wellness curriculum for persons with mental health challenges. She has bipolar disorder and has been hospitalized many times in her life. I used to visit her there when she was very effected by her ill state. But later, she was offered the opportunity to learn how to manage her own wellness that includes the doctor’s part but goes well beyond that. This was tremendously empowering! Through the years, she found part time work as a peer specialist, eventually went back to school and got her degree, and helped to develop a curriculum for people in our public system to help them learn to become more assertive about setting goals and managing their health. Now she will be working full time and contributing not only to the lives of her peers but to the North Carolina tax base. She is just an example of what is happening in communities across our state, but could be happening far more often in North Carolina. It is because someone has reached out to us to offer us support and not just to insist we take our pills.

    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.

    Our negligence of citizens by placing so many in these vacuous settings has been bad history. This is our shared fault as one North Carolina Community. However, this is our opportunity to re-think what has motivated the decisions we have made about mental health care and the people who need it. Let’s welcome this opportunity and the discussion and keep working hard until we get this right!