Righting the wrongs of the mental health system is what earned Wesley Alcorn, who is president of the National Association for the Mentally Ill (NAMI) Consumer Council, the NAMI Wolf Award for 1998. The NAMI Wolf Awards were instituted six years ago to recognize those citizens who spoke up and challenged the mental healthcare system’s status quo.
Alcorn was in the audience when Dr. E. Fuller Torrey, director of the Stanley Research Institute, first explained the concept of the NAMI Wolf Awards. Named after the aggressive animal, says Torrey, it is awarded to a NAMI member who has been particularly effective and outspoken in trying to improve services for people with serious mental illness. It goes to one who has “raised hell,” says Torrey, rather than maintain a sheeplike demeanor.
That description befits Alcorn. In 1991, at the age of 32, he first entered the mental health system with a serious depression and panic disorder and was hospitalized at a public health facility for 18 days. He went on Social Security to get Medicaid coverage for his illness and was then released to day treatment at Montana House, a Medicaid-funded community treatment center. He describes the experience as like being in a dog kennel.
Despite an $8 million annual budget, which he had to fight to see, he says, the place could not provide services as simple as a glass of milk; a lack of screen doors allowed patients to entertain themselves by counting fly kills, Alcorn quips. Alcorn pursued the problems of Montana House in the media, eventually getting the state to investigate the situation. The place went out of business, and the contract was given to another service provider. “It was a worst case scenario,” says Alcorn. “Disastrous. People died.”
Montana in 1991, says Alcorn, was a bad place and time to become mentally ill. The state had just deinstitutionalized its mentally ill, the last state in the Union to do so, and many patients were “dumped” into such community facilities. Indeed, says Alcorn, it was as recently as 1995 that services for the mentally ill were removed from the bailiwick of the state’s department of corrections. Today, Alcorn himself couldn’t get into the public hospital where his life was saved as they no longer take patients, and the only state asylum hospital has a completely involuntary patient roster which is tied to the penal system.
In response to these problems, Alcorn began putting pressure on the state’s federally funded advocacy group, Protection and Advocacy for Individuals with Mental Illness, whose role is to investigate allegations of abuse of people with disabilities. His stance, that the group is not protecting those that they were supposed to protect, got him kicked off the group’s board, and the ongoing struggle has produced several lawsuits. But his actions to publicize the problem also contributed to his winning NAMI’s Wolf Award, according to Dr. Torrey.
At the beginning of his struggles, Alcorn became aware of the state AMI association, becoming a rank-and-file member. He also used his background as a library clerk to volunteer to put together a library on mental illness to be made available throughout the state. He went to his first national NAMI conference in 1991, where Dr. Torrey gave him the motivation to become more aggressive. From there, he worked his way up until he ran the state AMI office for five years, still as a volunteer. Later, in 1995, he ran for vice-president of NAMI’s Consumer Council, composed of one consumer representative from each state, and the world’s largest group of mental health service consumers. He has, since 1997, been president of that council. Now, he serves as an inspirational speaker encouraging others to get involved in direct action.
According to Alcorn, the mental health system is so bad throughout the country that Montana can be seen to represent a microcosm of America in its treatment of the mentally ill. What has happened in Montana since 1991, he notes, only mirrors what has happened in the country at large in the last half of the century:
* The closing down of aging institutions without development of a community-based system.
* The closing of single-room occupancy residences due to gentrification, with the resultant rise of homelessness.
* The gutting of the public health system under the Reagan Administration, and the treatment of mental illness as a crime.
The rise of managed care, with the corporate sector privatizing care, using cost-benefit formulas that express threadbare human values.
From here on, says Alcorn, we are moving into the second generation of mental health advocacy, following the generation that saw the demise of the asylums and the first brave group of parents who formed NAMI. The next generation, he says, needs to turn to the strategies that produced the great social reforms of the 20th century, such as the civil rights and the women’s movements. Mental illness, says Alcorn, is the last bastion of discrimination, a biological condition as treatable and with the same recovery rates as physical illnesses if treatment is continued. Yet these patients have been frozen out of the healthcare insurance complex. It is much like the discrimination that affected African-Americans, he says, with the mentally ill denied access to mobility, education and credit; being routinely ghettoized; and made a collective receptacle of people’s fears. Taking as his role model Dr. Martin Luther King, Jr., Alcorn calls for nonviolent civil disobedience, such as marches, sit-ins, candlelight vigils and symbolic boycotts of the drug industry and of mental health facilities.
A good time to begin? Alcorn says May: Mental Health Awareness month. Among steps he is calling for to completely remake the system: Recognition that there are gradations of mental health consumers, all with different needs.
Perhaps some 20% of mental health consumers need some form of long-term care and housing, with some way to monitor their therapy. For these, Alcorn recommends that all 50 states have PACT programs, or Program for Assertive Community Therapy, a caregiving approach that started in 1974 in Madison, WI, where consumers are given housing and receive daily monitoring visits. For the 3% who need a great deal of oversight, the need is for a treatment system, not a jail.
Alcorn finds himself in the middle ground of the debate on coercion, believing in the need for some forms of coercive methodology but stopping short of absolute control–i.e., to continue trying to balance the civil rights of the individual with the community’s need for safety. To those clamoring for tightening commitment laws, Alcorn acknowledges the need, but only if there is somewhere to send this population where they can be assured of receiving treatment and postdischarge assistance.
Alcorn hopes to use the Consumers Council to facilitate the integration of patients with their families, to get both groups working together on the same page. “It’s the best thing I can do for America, for NAMI and for consumers,” he says, considering it a part of the healing process that got interrupted when mental illness hit the family. But integration is harder than it might seem, says Alcorn, because the disease that strikes the patient strikes the family, and scars everyone. The family/consumer dyad in the council represents but an expanded dynamic of the entire parent/child relationship. It is especially hard on parents, he says, because it is their job to make the child autonomous, but it is also their duty to keep him safe–“a dilemma.”