With the passing of Ed Knight, there has been a lot of reflection about the rising power of the peer movement in New York. Listed below is a Times article from 1995 highlighting the growing movement and the impact it had in the success of the original reinvestment campaign.
Thanks to NYAPRS and Harvey for sharing.
NYT in 1995: ‘Mentally Ill Gaining New Rights As Their Own Lobby’
NYAPRS Note: Here’s a piece in the Times going back to 1995 that highlighted the rise of groups like the Mental Health Empowerment Project that was created by Ed Knight and NYAPRS in advancing the self and system recovery and rights advocacy movements in New York. It highlights several early budget and program achievements, including the 1994 Community Reinvestment law that closed 5 state hospitals and created a mechanism for savings from downsizing to be used to grow the recovery, rehabilitation and peer services sectors, including the clubhouse and peer-operated housing programs mentioned below.
It also demonstrates the strong partnership NYAPRS and NAMI-NYS formed to pull over nightly candle light vigils to both pass the Reinvestment Law and restore funding cuts. In signing the original Reinvestment bill into law at Fountain House, Governor Mario Cuomo explicitly credited those vigils in influencing him to overcome his earlier resistance to approving the program.
Mentally Ill Gaining New Rights, With the Ill as Their Own Lobby
By Lisa Foderaro New York Times October 14, 1995
For decades, the mentally ill in the United States were shut away in psychiatric institutions and effectively barred from demanding better treatment, while parents — often blamed by doctors for children’s conditions — were shamed into silence.
No longer. In much the same way that members of minority groups, women and homosexuals have fought for and won civil rights protections and more government services, the mentally ill and their families have made similar breakthroughs, although their victories have been quieter, their growing power little noticed.
They have formed sophisticated organizations, successfully lobbying for better public services and for more money for scientific research. They played a major role in expanding the National Institute of Mental Health’s research budget to $596 million from $206 million over the last 10 years.
They have enlisted influential people to lobby for their cause in Washington, state capitals and Hollywood. Some, like Patty Duke and Art Buchwald, have suffered from mental illness. Others, like Senator Pete V. Domenici of New Mexico and Tipper Gore, have it in their families.
The largest and most powerful of these advocacy groups, the National Alliance for the Mentally Ill, started in 1979 with two mothers in Wisconsin and has spread to 1,100 chapters in 50 states with 140,000 members, mostly parents whose adult children are mentally ill. This fall, the alliance is planning a multimillion-dollar campaign against discrimination in health care.
A sign of the movement’s muscle is that even in these times of drastic budget cuts, there seems to be no turning back from community-based care, a trend that both families and former patients are constantly pushing to extend.
Indeed, New York State crossed a historic line in 1992, when for the first time there were more mentally ill people in state-financed group homes and apartments than in state hospitals; the figures now are 15,490 to 8,258.
An increasingly loud voice among the advocates comes from the mentally ill themselves. James F. Brennan, chairman of the Assembly’s mental health subcommittee and a Democrat of Brooklyn, credited the lobbying of advocates like Dr. Edward L. Knight, who founded the Mental Health Empowerment Project, and Harvey Rosenthal, executive director of the New York Association of Psychiatric Rehabilitation Services, with restoring some of the money that Gov. George E. Pataki planned to cut this year. Dr. Knight, who has a Ph.D. in sociology, suffers from paranoid schizophrenia; Mr. Rosenthal was once hospitalized for severe depression.
Mr. Brennan said: “The committee received several thousand letters, and there were candlelight vigils every evening for a month and a half outside the Capitol. They had a major impact.”
Because community programs are small and scattered, the gains often go unnoticed. But the examples are everywhere in the New York region. This fall, a community residence for 38 people is to open on East Burnside Avenue in the Bronx. On Oct. 30, a new “clubhouse” — where people who are mentally ill can seek job training and educational opportunities — will open in New Rochelle, N.Y., run by individuals with mental illness. And in Syracuse, a half-dozen apartments will soon be available, giving tenants the support they need to live independently.
Support Leaders and Agency Heads
People with psychiatric disorders — some prefer the term consumers — have started their own support groups and social drop-in centers and have themselves taken top positions in state and local mental-health agencies.
In Gowanda, N.Y., Judith A. Trysnicky, who has major depression and anxiety disorder, runs Housing Options Made Easy Inc., a nonprofit group that provides rental assistance, transportation, furniture donations and peer counseling in four counties. In Hackensack, N.J., Michael Corcho, who has depression, runs a drop-in center called On Our Own, a social gathering place for the mentally ill.
And Michael B. Laudor, a 32-year-old lawyer who managed to graduate from Yale Law School after developing schizophrenia, was just named a consultant on ethics in psychiatric research at the New York State Psychiatric Institute, the state’s premier research center.
“The consumer and family movement has been one of the most important developments in centuries in the care of people with psychiatric illness,” said Dr. Herbert Pardes, former director of the National Institute of Mental Health, and dean of the School of Medicine at Columbia University. “They’ve become a very important force in mental health policy.”
The movement is facing its toughest challenge since gaining momentum a decade ago. This year’s $1.74 billion mental health budget for New York State was down $122 million from the year before, the largest annual cut in memory.
As part of that cut, the New York Legislature reduced the pledge to community mental health services under its hard-won “reinvestment” bill to $26 million this year, from $44 million. That landmark legislation, passed in 1993, took the savings from the shrinking of state hospitals and earmarked it for community programs. Governor Pataki had proposed an even larger cut, to $20 million, but after vigorous pressure from mental health advocates, $6 million was restored.
Whatever the toll of budget cuts, they have united the forces pushing for more rights and services. Last summer, patients and their families joined psychiatrists in a rally in Central Park to demand better health coverage.
“People were whipped and burned at the stake,” declared one participant, Nora Weinerth, who is co-chairwoman of the National Stigma Clearinghouse, a group in New York that protests negative images of the mentally ill. “That’s who we are. But our history is also one of beauty and great pride — art, science, music. I look to the day that colleges teach our history the way they teach gay rights, African-American studies and women’s history.”
A crucial national victory in recent years came in 1991, when the National Alliance for the Mentally Ill successfully pressured Congress to include the mentally ill in the Americans with Disabilities Act, opening new job and housing opportunities.
Hysterical Headline Is Counterattacked
When Representative Chuck Douglas, a New Hampshire Republican, held up on the floor of the House a mock newspaper headline reading, “Berserkers: Time Bomb in the Workplace,” his vision of what might happen if the mentally ill gained new job rights, the alliance’s New Hampshire chapter counterattacked, holding press conferences and waging a letter-writing campaign.
Roderick Bean is a striking example of how much has changed for mentally ill people in the last decade. The 28-year-old Buffalo man has been in and out of the hospital dozens of times for manic depression.
This year, with the help of medication, he is visiting the homes of other people with psychiatric problems as a peer counselor. He sees eight people two or three hours a week each, smoothing out a problem with a landlord, offering empathy and a helpful word on finances. Mr. Bean works for Housing Options Made Easy, which started in 1989 with a $79,000 grant from New York State.
“When I was in the hospital going through my hard times, I wasn’t hearing what I wanted to hear,” he said. “Those guys haven’t been there. All they know is from books. They haven’t lived the life. But I’ve been there, and it makes me feel good that I can pick up what people are going through without their telling me.”
Since the late 1980’s, the number of self-help groups for the mentally ill in New York State has jumped from a dozen to some 400, according to Dr. Knight, the founder of the Mental Health Empowerment Project. The project, a nonprofit organization in Albany, helped establish most of the groups.
The push for rights and services can be traced to the mid-70’s when states were accelerating their efforts to move people out of institutions. The exodus resulted from the introduction of new drugs, the protests of civil liberties groups and a desire by states to save money.
Another turning point came just over a decade ago when researchers like Dr. E. Fuller Torrey began concluding from genetic studies and brain scans that the cause of many mental illnesses, including schizophrenia and manic depression, was largely physiological and not the result of poor treatment in childhood.
Many parents have painful memories of being blamed for their child’s disorder just when they were consumed by worry and searching for answers. Martin Nachbar of Oceanside, L.I., whose son suffers from depression and obsessive-compulsive disorder, recalled how early on, a psychologist and social worker kept “digging in the same areas as if they were looking for our part” in his illness.”
“The question always came into my mind,” he said: “What if he were suffering from a physical illness? This wouldn’t be happening.”
To be sure, patients and their families do not always have the same priorities.
Parents frequently want involuntary commitment laws strengthened so their adult children will get treatment, while the mentally ill often feel such laws strip them of their civil rights and force them to take medication that may have awful side effects.
But they come together on certain fronts, like lobbying for better insurance coverage and more community services.
New York’s Symbol of Achievement
In New York State, the focus of the most intensive, and successful, joint lobbying campaign in recent years was the passage of the Community Mental Health Reinvestment Act. It committed $210 million over five years to community services. And though the reinvestment budget was reduced by Governor Pataki, it has become a symbol of what can be achieved.
“I don’t think there’s any question that without the input of the family members and consumers, the Community Reinvestment Act wouldn’t have become law,” said Steven Sanders, former chairman of the State Assembly’s mental health committee, adding, “It raised the issue to a moral high ground.”
Perhaps the most visible sign of the mental health movement’s emergence is the willingness of prominent individuals to speak out about their own illness or that of a family member.
Senator Domenici and his wife, Nancy, have a daughter who is mentally ill. The Senator has fought to increase Federal money for psychiatric research and spoke this summer at the convention of the National Alliance for the Mentally Ill. Mrs. Domenici served on the alliance’s board from 1990 to 1993.
Patty Duke, the actress, who has manic depression, has written two books about her experiences, has testified before Congress and makes public service announcements. Tipper Gore, the wife of Vice President Al Gore, speaks publicly about her mother’s depression and presided at a conference last month on mental health and managed care. Art Buchwald, the humorist, has written about his depression and has spoken at fund-raising events for the national alliance.
“These folks are all heroes,” said Laurie Flynn, the alliance’s director. “They have nothing to gain by coming forward, but they will make a big difference in a lot of people’s lives.”
And Don’t Forget to Save the Date for the NYAPRS 22nd Annual Legislative Day