NC CANSO Director Responds to Article About the Department of Justice Settlement

This commentary was posted on the NC SPIN website on November 28th following the publication of an article by the Director of the NC SPIN news and opinion site.

Mr. Tom 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!

To read this NC  Spin article:

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