“HOW WE GOT HERE”
Condensed from Address by Elaine Purpel, NC AMI’s First President, at NAMI North Carolina’s Spring Conference, 1994.
On March 17, 1984, I welcomed 100 people to NC AMI’s first statewide conference. Those of us on the steering committee of our fledgling organization were excited and optimistic. It was hard to believe that in 3½ months this group of 15 or so strangers had succeeded in planning and pulling off a day-long conference and in laying the groundwork for a grassroots organization dedicated to “promoting the quality of care and the interests of the mentally ill.”
We had discovered the secret ingredients. The first ingredient was a VISION of a better world for the mentally ill and their families. The second was BELIEF IN OURSELVES that together we had the wisdom and the strength to find solutions and make the system change. The third was COMMITMENT to that vision and to making North Carolina better for ourselves and our loved ones. We were the only people in the state of NC who had HOPE for a better tomorrow for the mentally ill.
Before this, we had cried and raged because we had a seriously mentally ill son or daughter or parent or sibling or spouse with nowhere to turn. We felt, and we were, alone. There were no community support programs, no case management, no alternative housing other than the hospitals, no clubhouses, and no supported employment.” How could we ask for any, of these when we didn’t know such things were possible? The NC Division of Mental Health didn’t know about such things either; did not even know how many seriously mentally ill citizens there were in North Carolina and, of course, had no idea how much money, was being spent on services.
In 1981 I learned that my son had schizophrenia. My husband and I cried, grieved, raged, and talked to no one about it. I knew there were others like me out there somewhere. Then I read an article in Social Work which described a new organization made up of families of mentally ill persons, the National Alliance for the Mentally Ill. The author was Dr. Agnes Hatfield. Because of Dr. Hatfield, psychiatrists, psychologists, psychiatric nurses, and social workers became aware of NAMI and began to pay attention. I wrote a letter to NAMI and received a packet of information and a lengthy handwritten letter from Carol Howe. Carol was a volunteer in the NAMI office doing whatever needed to be done including answering letters of inquiry. She told me about a NAMI convention in the summer of ’82 and urged me to attend.
I did, and it was an incredibly powerful experience. The excitement, energy, determination, and creativity among the families were a life-giving tonic. There I learned that families of the mentally ill are strong and noble; that families can find strength and courage in each other and together families can do something to improve conditions. The NAMI priority was to establish an affiliate in every state; I knew I needed to do something to establish a statewide AMI organization in North Carolina.
I began to attend meetings of the Greensboro REACH group called Family to Family. I told this group about NAMI, and they decided to join. The Mental Health Association paid our $25 dues, and we became the first affiliate of NAMI in North Carolina, and I became the contact person. Whenever NAMI received an inquiry from North Carolina, NAMI referred that person to me. Within one year I had a list of “more than 30 North Carolinians who had seriously mentally ill relatives.”
One call was from a woman near Charlotte who had an ill son the same age as mine. She said, “I think what this state needs is a statewide AMI organization.” Her name is Marcia Garatt. I cannot overstate the importance of that moment to this organization. Once I knew someone shared the vision and the belief that families can do what needs to be done, then I knew it could be done. We made a commitment to work together to establish a North Carolina Alliance for the Mentally Ill.
On October 29, 1983, in Greensboro, we held a meeting of about 20 families and supportive professionals. In attendance were Jim and Carol Howe who generously drove from Maryland with one of their two mentally ill sons to assist us. Carol had recently rotated off the NAMI Board of Directors; Jim was a newly elected NAMI Board member. Also in attendance were Bill Thomas who was then the Chief of Mental Health Services in the NC Division of Mental Health; Peter Johnson from the Department of Social Work at Carolina; and Dayton Greene, then Area Director of the Guilford County Area Program.
The families gathered that day enthusiastically endorsed the idea of establishing a state affiliate of NAMI. We named ourselves the North Carolina Alliance for the Mentally III and got to work. I was asked to chair the steering committee, and we decided to hold a conference the following spring. We passed the hat and collected our first Treasury; Mary Carter agreed to serve as Treasurer; Marcia Garatt was Secretary, Wanda Sigmon, now Wanda Myatt, designed our letterhead. I’ll never forget my excitement when I got that first box of stationery with our logo. That box of stationery proved that we were real. George Hays designed our brochure; George and Sam Carter developed bylaws and articles of incorporation.
We wanted to be a grassroots organization in keeping with the NAMI model, and that meant a board of directors elected by and accountable to its members. We set the date for our first statewide conference–March 17, 1984. Marcia and Paul Garatt started producing a newsletter in January 1984. We began feeling HOPE that together we might make a difference. So we chose HOPE THROUGH ACTION as the theme for the conference.
We found the National Institute of Mental Health model of community support programs and invited Jackie Parrish to tell us how such programs work; Agnes Hatfield to tell us how families cope; Jim Howe to tell us how to advocate and Carol Howe to tell us how to start local groups. We also asked Dr. Eugene Douglas, then the Director of the NC Division of Mental Health, to tell us his vision of the mental health system in 5-10 years. These presenters made significant contributions to our growth and development, some in unexpected ways.
At the end of that conference, we voted to incorporate, adopted bylaws, and elected a board of directors. We had seven local affiliates and 148 families as members. I was elected president.
As I look back, I can hardly believe how much we did. At our first board meeting we set and prioritized goals; we set an internal policy for the use of NC AMI letterhead; and compiled a list of questions. Here are the goals that were set on March l, 1984:
- Establish a legislative committee.
- Increase membership.
- Educate ourselves about the mental health system.
- Educate professionals to include families as partners.
- Promote community support programs.
- Learn about community support programs.
- Coalition-building: MH, CCMP, etc.
- Enhance public awareness about the mentally ill.
- Establish a clearinghouse for information.
- Research what is happening in NC.
- Work to maintain the high quality of state hospitals.
Here are the questions we drafted: How many state hospital beds are projected to be closed in the next five years? What options are available to mentally ill in their communities and what are plans for the future? How does the Division plan to help CMHCs with funds and technical assistance? What is the projected cost of an ADEQUATE community care continuum? Will case management be implemented in every area program this year? Who will be doing case management? What is the size of the case loads? What will case managers be doing if there is no place for people to live? Is deinstitutionalization money preceding or following patients? How is money going to be shifted? What is the definition of appropriate services? What residential services are planned and what are the projected deadlines? What is the definition of individuals to be served in state hospitals? What is the projected number of people who will be in state hospitals and what are the Division’s criteria for the determination?
I had the great pleasure of writing a letter with these questions to the Division Director. I wonder if the Division had ever been presented with quite such a comprehensive list of challenges. I have an image of the Division, collectively, staggering backward and saying, “What hit us?” These questions went a long way toward setting our long-range agenda with the Division and in helping the Division set its agenda.
By August of ’84, we had established a legislative committee and this guiding policy for that committee: “Every resident of North Carolina with a diagnosis of mental illness should have equal access to the most therapeutic treatment within a full continuum of mental health care without ejection from the mental health care system. The continuum shall include state-of-the-art hospitals and a full range of community care. A uniform system of excellent care should be available to all mentally ill North Carolina citizens. The immediate emphasis in legislative lobbying will be to urge the establishment of appropriate long-term community care for chronically mentally ill patients with adequate state funding to provide a full range of supportive services. The goals of such care should include improving the quality of life for the chronically mentally ill as well as enabling such persons to be as self-sufficient as possible.”
That policy statement represented the culmination of three months of discussion, sometimes very heated. It was one of the, most important pieces of work we did because it brought together divergent views on our board. Notice we avoided the trap of the hospitals vs. community programs dichotomy. We came to understand that it was not an either-or matter. We arrived at a consensus on the concept of a continuum of services which includes both. The process of consensus required real discussion, real give and take. Because we had a sense of urgency we had to get on with it, a stalemate was not an option. This process resulted in monthly, long, hard meetings but we always felt what we did was important. And that kept us going.
At the end of our first year, our membership had increased from 148 to 403; affiliate groups increased from 7 to 12. At the end of our second year, we had 800 families and 19 affiliates. Let me remind you that this had been accomplished with no paid staff. George Hays and John Simpson were primarily responsible for starting the new affiliates. In 1986 we received a $20,000 grant from the Z. Smith Reynolds Foundation. It was decided to set up a state office in June with John Baggett to serve as the director through December “at the pleasure of the Board.” Talk about having faith! We took a leap, not knowing where we would land.