Consumer Employment: Advocacy Assumes Another Face

November 1, 1997

The goals of National Coalition for Mental Health Professionals and Consumers are to educate the public about the problems of managed mental health care and to develop alternative health delivery models. I think greater media coverage has spawned greater awareness of the difficulties with managed care and has provided legislators with vital information. Certainly sharing their stories has made many people feel less alone and isolated within a system they find frustrating and depriving. I think media advocacy has helped doctors find support for their right to stand up to these abuses and band together in greater numbers to fight for integrity and quality in mental health care delivery.

Moe Armstrong is director of consumer and family affairs for Vinfen Corp., a $48 million-a-year Massachusetts mental health services provider. A typical workday for Armstrong begins when the alarm rings at 5 a.m., and ends long after most folks have polished off their evening meal.

With a master's degree in business administration and human resources, and 53 years of life experience behind him, including decorated combat service in the Vietnam War, Armstrong is more than qualified for his demanding role as advocate on behalf of some 1,200 mental health consumers. For Armstrong, however, his most important qualification is his own schizophrenia.

"Having schizophrenia is like being at the bottom of the barrel," says Armstrong, whose encounters with this country's mental health system motivated him to push for change. He first experienced symptoms of schizophrenia in Vietnam; and then wandered through the United States and South America for more than 20 years, confused by voices and feeling suicidal. Homeless, he lived on city streets and in the mountains of northern New Mexico, abusing both alcohol and drugs.

"I didn't seek any help, which is something I've really regretted," says Armstrong. "But 30 years ago the psychiatric system was something you wanted to stay away from. It used to be a very oppressive system; it infanticized people." (Nor has traditional mental health care been particularly economical. The cost of treating schizophrenia in this country is greater than the cost of all cancers combined, an estimated $50 billion annually for the 2.5 million American adults afflicted with the illness.)

Although he still had not sought treatment, Armstrong took the suggestion of an occupational therapist and went back to school. After graduation, he accepted a job with the New Mexico Recreational Health and Occupational Center (the only mental health agency he says would hire him), and from there was recruited to his current position. Armstrong also serves on the President's Conmission on Employment for People with Disabilities. Vinfen Corp. employs 60 mental health consumers, people who both use and work in the system. While these circumstances may reflect the fiscal realities associated with traditional hospital-based treatment, Armstrong suggests they also forecast a future trend-consumer employment-whereby individuals with psychiatric conditions join the staff of provider organizations and are paid for their services.

"I don't know of another major mental health agency that has an office like mine," says Armstrong, "where a person with major schizophrenia is actually a program director who meets with other program directors to help plan services and guide the vision of the organization."

Armstrong describes his professional goal as providing patients with more individualized care, maximizing each patient's potential for wellness, and revising traditional professional standards for behavior between patients and caregivers.

"Imagine how many of us have schizophrenia and nobody has thought about us as people, or that we had a story," says Armstrong. He also points out that working directly with mental health consumers provides caregivers with valuable insight into the illnesses they treat. "People need to hear from us what it's like to have this condition rather than us being told what we're like," Armstrong insists.

Nelson Kull, executive director of Pathways Drop-In Center in Orlando, Fla., sees an additional benefit to consumer employment: it provides patients with a first-hand look inside the system, and this can help defuse the sometimes antagonistic relationship between consumers and caregivers. "Some people criticize doctors and pharmaceutical companies for making a lot of money," says Kull, "but they gave me back my life. I once told meeting [attendees] that yes, psychiatry and medical care cost a lot, but your car costs a lot. I can't drive my car without my medications, so which comes first?"

The possibilities of consumer employment have been supported by the development of the new generation of atypical antipsychotic medications that control both negative and positive symptoms and diminish the side effects that often discouraged patients (PT March).

Patients accustomed to conventional antipsychotic medications such as haloperidol (Haldol), available since the 1950s, which block dopamine receptors and thus control only positive symptoms, have been encouraged by the serotonin-dopamine antagonists that block both serotonin and dopamine receptors, thereby also treating the negative symptoms. These include lack of drive and initiative, social withdrawal and apathy, and emotional unresponsiveness. That the newer medications don't cause side effects such as muscle spasms, parkinsonism, mental slowness and emotional restlessness has also made it possible for individuals with psychiatric conditions to more effectively integrate into the community.

S. Charles Schulz, M.D., professor and chair of the department of psychiatry at University Hospitals of Cleveland and Case Western Reserve University, considers the new drugs particularly good news for the 75% of schizophrenia patients who first experience symptoms between the ages of 13 and 25. Schulz reiterates the point that many teenagers and young adults remain undiagnosed and untreated because social stigma blocks acknowledgment of their illness.

Furthermore, some clinicians are reluctant to prescribe antipsychotic drugs for young patients, the result of which is that these individuals routinely find themselves unable to function in conventional educational and employment situations and often end up living severely marginal lives, dependent on public funds.

Schulz, who regularly works with teenagers at Case Western's Center for Adolescent Health, is heartened by remission rates as high as 83% among first-episode schizophrenia patients who receive immediate intervention with atypicals. "We feel strongly that the new medicines have a tremendous amount to offer in this early stage of illness," says Schulz, who expresses particular concern about the misinformation attached to schizophrenia. "We've had patients who were getting counseling from a school counselor on ways to stop hallucinations for a year. We just can't do that anymore."

Rachel Linn's experience is typical. Linn, now 29, works at a Starbucks Coffee outlet as a cashier, lives with a roommate in Manhattan and cares for two cats, but her process of community integration required extraordinary effort.

Linn experienced her first symptoms in high school but wasn't diagnosed until her sophomore year at New York University.

Given lithium for her depression, Rachel managed to graduate from NYU after being hospitalized three times in her senior year; a result, she says, of anxiety about her plans after college. Her mother interceded after Linn endured a succession of unsuccessful relationships with hospital residents and clinic psychologists. She directed her daughter to a psychiatrist in private practice who clarified Linn's diagnosis, prescribed the atypical antipsychotic olan-zapine (Zyprexa) and provided a comfortable psychotherapy relationship. Unfortunately, Linn's financial resources now restrict her to once-a-month visits for medication. She recently decided to begin working with an occupational therapist to determine the best way to use her writing and speaking skills on behalf of individuals with similar illnesses.

Kull had a more fortunate interaction with the system. In part because of his mother's own mental illness, Kull was diagnosed as paranoid schizophrenic at the age of 16 and was immediately prescribed haloperidol, which he says he took religiously, fearful of falling back into paranoia, delusions and "total mental disorganization."

Kull managed to make it through high school, attended college and then drifted, until an impromptu speech to a gathering of 200 mental health practitioners provided the link between his illness and what was to become his vocation: to work in the mental health community.

"They loved me," says Kull, echoing Armstrong's observation that conventional health care providers often lack an inner understanding of schizophrenia. "I had a whole lifetime of mental illness, and they wanted to know about it. Also, I didn't take the classic position that the consumers are always right and the doctors and the psychiatrists are always wrong. I took a problem-solving approach and told it both ways."

Kull continued to develop his voice as a public speaker, joined the National Alliance for the Mentally Ill (NAMI), and was recruited to run for local chapter president. Instead, he assumed the goal of creating a center to care for mentally ill individuals who would otherwise lack basic services.

The four-year-old Pathways Drop-in Center targets mentally ill patients whom state budget cuts forced out of hospitals into assisted-living boarding facilities. The center offers free toiletries, clothes, laundry machines, even computers and fax machines and phones, plus two meals a day. Kull manages to keep the costs down to $7 per day for each of the 25 to 40 people the center serves daily. Except for one family member, the parent of a mentally ill child (in NAMI culture, parents and siblings are referred to as "family members") - the center is staffed entirely by mental health consumers, and its bylaws require the majority of the board also be mental health consumers. The center receives funding from county and state contracts and from private donations, and Kull prides himself that the operation is independent and freestanding, that is, it isn't run as an adjunct of a public or private provider agency.

Kull credits NAMI for getting the center off the ground and training him in organizational skills while he did the up-front work. "I bugged the bureaucracy for three years straight, harassing everybody until finally they gave us the money," he explains. "Actually, a couple of family members finally took them aside and told them the consumers could do it."

Like Armstrong, Kull thinks the answer to providing supportive, cost-effective care that can move patients out of hospitals into the marketplace must combine pharmacology and social services, and he insists the new atypical drugs should be paid for with public funds. "It takes $200 a day to keep someone in a state hospital. You can give them risperidone (Risperdal) for $200 a month." Kull emphasizes the risperidone he now takes enabled him to conquer his strongest symptom, lack of motivation. "I used to spend two hours preparing to take a shower. Now I hop in and out of the shower and get on with my life."

While the consumer employment movement is gaining momentum as a practical alternative to delivering conventional care, the concept confronts a number of unresolved issues. For example, Armstrong now thinks he underestimated the amount of manpower that will be needed to deliver his goal of more personalized care. Admitting his approach will require allocating more caregiver time to each patient, he suggests hiring "an army" of consumers. "I can't see any way out," says Armstrong. "Pay consumers a minimum wage, so they don't lose their social security and send them out into the community to do what I do, spend some time with people, maybe go over to a person's house, wash the dishes, watch some TV."

Kull worries that the most competent consumers often want to move on and make a mark for themselves in the real world in order to escape the social stigma associated with their illness. This often leaves individuals like himself prone to burn out. "The social stigma makes a lot of people leave the mentally ill subculture behind," says Kull. "It's sad. I don't feel embarrassed. My mother was mentally ill, but she was the best mom you could ask for."

Schulz also cautions that neither public nor private sector care is currently sensitive to the variable outcomes of schizophrenia. In addition, the course of the disease is likely to be influenced by the interaction of individual brain structure and function with personality, temperament and environment. This means mental health providers may not yet be up to speed on care levels consumer providers might be called upon to provide.

"If a person needs more supervision they ought to be able to get it," says Schulz, emphasizing a fundamental premise of the consumer provider philosophy, "and if a person is able to progress and get a job, they ought to be able to do that also."

Some reports indicate that up to 50% of people diagnosed with schizophrenia receive no treatment, perhaps including the one-third to one-half of homeless adults estimated to be suffering with the condition, a situation that Armstrong hopes will be diminished if more consumer-integrated organizations can be developed to directly relate with patients attempting to obtain (and pay for) care. "I think, eventually, there will be a lot less shame and people will be able to get the services without all the hang-ups," says Armstrong. "I'm a guy who really needed services for the longest time and didn't get them."

Armstrong's objective for the consumer employment movement is reflected in the advocacy expressed by Rachel Linn. "I have three diagnoses," says Linn. "I'm schizoaffective, bipolar type. I have obsession-compulsive disorder, and I have borderline personality disorder. But I'm a writer. I'm an advocate, I'm a friend, I'm a family member. I'm a pet owner. I'm a worker. I'm much, much more than an illness."