Broken promises

In reading your recent roundtable on state mental-health reform (“Slouching Towards Bedlam,” Jan. 17 Xpress), I was struck by the enthusiasm Curtis Venable of Pisgah Legal Services has for our present mental-health-care system. Clearly, Curtis and I live in different worlds.

Through no fault of her own, my daughter has severe mental illness. I was promised that Medicaid would provide and pay for all psychiatric care for her as an adopted, special-needs child. Initially, Charter was able to provide the intensive outpatient-and-crisis services she required, and she made great progress. But Charter closed in 2001 (the year “reform” began), and most of the services we lost then have never been restored.

When we called the local program during a psychiatric crisis after Charter had closed, we were told to call the police, who would handcuff my 11-year-old and drive her to John Umstead, a state mental hospital five hours away. I was instructed to wait until my daughter was actually hurting herself so she would qualify for admission. And when Copestone, the local hospital, opened an adolescent unit, we would sometimes wait 12 hours or more in the emergency room only to be told that she would not be admitted.

As the years passed with crisis services still not available, my daughter’s condition deteriorated. Eventually she was admitted to Broughton state hospital, where children sometimes had to sleep in the hallways because the state had closed other wings of the facility under the banner of reform. When my child was ready for discharge, there were no services for step-down care. The Whitaker School, another state facility, had a two-year waiting list because reform had reduced the number of beds they had. As a result, we were forced to seek treatment out of state, and my child spent two years institutionalized in Georgia and South Carolina. Despite all the lofty promises made, North Carolina did not provide the services my child needed, which could have kept her at home and out of expensive—and traumatic—institutional care. Pardon me if I am not impressed by the so-called mental-health reform.

Those of us living the reform nightmare are told to be patient while change is taking place. Meanwhile, my child lost her teen years to institutionalization, and I have too many friends who’ve seen their children default to institutional care, group homes or juvenile justice because critical services no longer exist. I know too many people who wonder if their adult child is freezing to death under a bridge or will end up in jail—the state’s largest mental-health institution—because the housing and other needed supports just aren’t there. No one with a physical condition such as heart or kidney disease would even dream of having to endure such a situation. Yet people with brain disorders and their families are expected to accept that suffering, institutionalization, jail, homelessness, suicide, broken lives and destroyed families are merely part of the landscape of a floundering mental-health system. This is our world.

To assert that the reform is working so well that we have no ER or jail problem ignores the facts. Nationwide, 64 percent of jail inmates are people with mental illness; North Carolina’s average is 70 percent. In Buncombe County, 400 inmates with serious mental illness were treated in our local jail in 2004. The following year, that many inmates had been treated by October.

Our private and state hospitals are usually at or near 100 percent occupancy, yet the state moves ahead with plans to close more beds. Who does it serve to pretend that our “reformed” mental-health-care system is working? Granted, many wonderful local people are doing a great job of providing the lower-intensity services that are still funded, but those services may not be enough to stabilize a person with severe mental illness. Where are the outpatient crisis facilities and step-down services promised by reform? And why does it continue to be OK that such serious gaps in care persist?

To be sure, there were many problems with the pre-reform mental-health-care system, especially in the area of children’s care. So when we were told that the new system would provide a full continuum of community-based services, I desperately wanted to believe those promises. Dr. Tom Smith, a retired psychiatrist and patient advocate, was usually holding a placard or speaking out in public meetings, warning us that the reform was a sham. It turns out that Dr. Smith was right.

This so-called reform has not been about improving care for people with mental illness. It has been about big business, money, power—and a thinly veiled attempt to save state Medicaid dollars by squeezing some of our most vulnerable citizens. Shame on the state of North Carolina for inflicting this travesty on us.

[Diane Bauknight, whose adopted child has mental illness, is a founder of WNC Families CAN, a support group. In 2002, she received the Nancy Susan Reynolds Award for advocacy.]