History of NAMI-GC

Precursors:

NAMI of Greater Chicago’s history really begins in September of 1976, when the Huxley Institute sponsored a lecture on schizophrenia. An unknown person from the north suburbs inquired about forming a group of parents concerned about mental illness and a sheet of paper was passed. Twelve interested persons signed.

About the same time, two other parents in the north suburban area independently decided that a parent group dealing with mental illnesses was needed. Two groups were formed: NASS (North Area Schizophrenia Society) and SFI (Schizophrenia Foundation of Illinois-Highland Park). NASS held their first meeting in a church hall in December 1976. The meeting drew approximately 35 interested persons. In November 1977, the group was expanded to include all persons concerned about mental illnesses and the name was changed to the Society for Schizophrenia and Related Illnesses (SSRI). Shirley Starr was instrumental in the formation of the SSRI group.

A Few Years Later:

In 1979, in another part of Chicago, a group of parents had been attending meetings at Thresholds, a local provider agency. These parents, concerned about improving the services for their loved ones, formed an organization called VOICES (Voices of Interested Citizens for Emotional Stability). Horty and Joe Levkovitz, Shirley and Mel Berngard, Marge and Sid Tepperman, and Shirley and Bob Starr were the initiators of VOICES. Shirley Starr was elected President of the newly formed corporation which was incorporated in February of 1979. Initially, support group meetings were held in the Levkovitz’s living room and as the group’s numbers expanded, meetings were moved to the basement of the Hemingway Church in Evanston, IL and at the Old Orchard Hospital.

AMI Formation Begins:

The various groups of families advocating for persons with mental illnesses in the Chicago area, realized that there was strength in numbers and these small groups began to merge. In May 1979, NASS-SSRI became AMI (The The National Alliance on Mental Illness). Then in September of 1979, the founders of VOICES (Horty Levkovitz and Shirley Starr) and representatives of AMI, met in Madison, Wisconsin together with about 250 family members from family support groups around the United States. At this meeting in Madison, Wisconsin, the National Alliance for the Mentally Ill (now known as NAMI), a national family movement to improve services for persons with mental illness, was formed. One of NAMI of Greater Chicago’s founders, Shirley Starr, became the first elected President of the newly formed national organization.

AMI in Chicago was strengthened when a merger occurred in February 1980 between the NASS-SSRI (then known as AMI) and VOICES with all assuming the umbrella name of AMI as their organizational name.

AMI of Illinois:

After the formation of the national NAMI organization in September of 1979, the Chicago group changed its name to the The National Alliance on Mental Illness of Illinois (AMI of Illinois) and Shirley Starr served as President from 1979 to 1984. During these five years, other AMI family support groups were forming throughout the state of Illinois and by 1984 it was clear that it was time to form a statewide AMI coalition.

In 1984, the State Coalition was formed and assumed the name of the The National Alliance on Mental Illness of Illinois. The Chicago AMI group’s name was changed to the National Alliance on Mental Illness of Greater Chicago (AMI-GC), and after having served as a volunteer in the role of President for the preceding five years, in 1984, Shirley Starr was hired as the first AMI of Greater Chicago’s (AMI-GC) Executive Director. Shirley Starr served in this role until 1986.

“7720 House” & the BLA Program:

In 1980, Shirley Starr provided funding for AMI-GC to purchase an apartment building at 7720 N. Ashland Avenue. It became known as the “7720 House” and served as a group home for eight mentally ill persons. The program had management staff and support staff available 24 hours a day to assist residents. Later it was incorporated as a separate not-for-profit corporation and that corporation, today, continues under the Trilogy umbrella to assist persons with mental illnesses to find appropriate housing.

Also in 1980, the National Alliance on Mental Illness of Greater Chicago obtained a grant from the State of Illinois Department of Mental Health to establish the Better Living Apartments (BLA) program. The BLA program provided case management services for 13 mentally ill adults who lived in their own apartments in the community. In 1995, the management of the BLA program was turned over to the 7720 House Corporation.

Shirley Starr’s Role Locally and Nationally:

Shirley Starr’s dedication to the formation of the family advocacy movement included acting as the first elected President of NAMI National from 1980-82. This service, as well as her dedicated service to AMI of Greater Chicago from it’s inception in 1979 through 1986, prompted NAMI of Greater Chicago to initiate the Shirley Starr Volunteer of the Year Award, which has been given each year since 1986. This prestigious award, determined by the NAMI of Greater Chicago Board of Directors, has taken on even more valued significance since Shirley Starr’s death in late 2003.

Executive Directors – 1979 – present:

Upon Shirley’s departure in 1986 as the Executive Director of, then AMI of Greater Chicago, Laura Guilfoyle, a family member, assumed the role of Executive Director of AMI of Greater Chicago and served in this role from 1986 until 1991. Subsequent Executive Directors have been: Gene VanDenBosch from 1991 to 1992; Sherry Kristesevic from 1993 to April 1994; and Suzanne M. Andriukaitis, M.A., LCSW from April 1994 to present.

Becoming NAMI of Greater Chicago:

At the NAMI National Convention in Albuquerque, New Mexico in July of 1997, the national membership of the organization approved a referendum stating that all state and local affiliates in the organization should call themselves NAMI of (name of area). AMI of Greater Chicago then became NAMI of Greater Chicago. Because of our already well established name recognition as the National Alliance on Mental Illness of Greater Chicago, we continue to use both names on our stationary and letterhead.

Awards to NAMI of Greater Chicago:

Over the years, NAMI of Greater Chicago has received a number of prestigious awards. In 1989, NAMI of Greater Chicago received the Beatrice Foundation award for Excellence in Nonprofit Management. A poster and an obelisk commemorating this award are on display in the office today. Other notable awards have included: a newsletter award from NAMI National in 1986, a membership award from NAMI National in 2000, and a Consumer of the Year award in 2001 from NAMI National to Donna Willey, Consumer & Membership Coordinator at NAMI of Greater Chicago. Additional countless letters of appreciation for service to the Chicago community have been received from the state NAMI and National NAMI.

Over the Years:

Providing support to persons dealing with serious mental illnesses has always been a key part of NAMI of Greater Chicago and remains so to this day with support groups meeting in our office as well as in a variety of locations around Chicago. Long time members and founders of VOICES/NAMI of Greater Chicago, Horty and Joe Levkovitz helped to form the first family support group in the late 1970’s and have remained active in NAMI of Greater Chicago in many ways. Currently, Horty serves on the NAMI of Greater Chicago Board of Directors and volunteers one day a week in the office assisting callers to our Information and Referral Helpline.

In the early years, the Helpline for NAMI of Greater Chicago was located in the homes of various members. When an office was established at 833 North Orleans, Chicago in 1986, the Helpline was answered in the office by volunteers. In 1986, Shirley Woyt was hired as Volunteer Coordinator to coordinate the informational resources available to assist volunteers in providing valuable information and referrals for services to the callers.

Unfortunately, identifying and locating mental health resources can be an overwhelming task for many individuals and/or their families. Until 2000, our Helpline was available only from 10 AM to 2 PM on weekdays. A grant from the Chicago Community Trust enabled us to hire Sammye Williamson in 2001 and to expand our Helpline hours to 10 AM to 5 PM. Today, NAMI of Greater Chicago’s Helpline receives more than 5,000 calls annually, nearly 20 per day, from Chicago area persons seeking assistance in dealing with mental illnesses.

Keeping track of the myriad of resources that persons need to assist them in dealing with the vast array of life issues that can be impacted by mental illnesses, in such a manner as to be easily able to retrieve the appropriate information for the situation required a database. A rudimentary database was developed many years ago by Donna Willey, but as computers and software became more user friendly and our database of resources was growing, we needed to overhaul our methods. In 1997, Bob Jurman began assisting with programming and structuring our data management to make retrieval easier. Over the past seven years, Bob has logged hundreds of volunteer hours continuing to assist us in developing and refining our databases for referral information and for managing membership information. The structure (not the data) for these databases has been widely shared with other NAMI organizations nationwide. Once our information was easier to retrieve, everyone in the office wanted access to it at all times. With the help of then 16 year old, Peter Andriukaitis, the office computers were networked to allow every computer in the office to access and input information. Over the past seven years, Peter has also logged hundreds of volunteer hours assisting with the maintenance and upgrading of our computers and networked system. This expanded networked system also paved the way for greater consumer involvement at the NAMI of Greater Chicago office assisting with updating the information in the Referral database.

Public education and advocacy have always been an integral part of NAMI of Greater Chicago. As far back as 1987, NAMI of Greater Chicago provided a speaker’s bureau, member education and special events. Volunteers and staff regularly speak to groups of families, university students, mental health professionals, teachers, etc. In 1998, we developed an educational program for high school students called The Broken Brain. This one hour program provides students with information about mental illnesses and stigma. We educate our members as well as the public through regular mailings, newsletters, seminars, and our circulating library. Each October, we co-host a Walk-A-Thon in conjunction with our affiliate NAMI of Chicago Read Advocates to celebrate Mental Illness Awareness Week and to raise funds for the programs provided for inpatients at Chicago Read Mental Health Center.

As part of NAMI of Greater Chicago’s commitment to ensuring decent and humane care for persons with mental illness, over the years, our staff and volunteers have participated in site visits of state hospitals, correctional facilities, nursing homes, and community mental health centers and reported to authorities on conditions observed there.

A Permanent Home:

In the summer of 1999, the building at 833 North Orleans, which had been the home of NAMI of Greater Chicago for 16 years, was sold and the new owner planned to use the entire building. After a diligent search for new rental space, it was determined to be more expensive than using our accumulated equity to purchase a piece of property. We were fortunate to find the building at 1536 West Chicago Avenue with space for the office on the first floor and a rental apartment on the second floor with income to offset the majority of the mortgage. NAMI of Greater Chicago has benefited greatly from this low overhead cost for our office space freeing up our funding to provide programs and services for the Chicago community.

Minority Outreach:

The need to provide education and support to persons with mental illnesses in all communities was acknowledged by NAMI of Greater Chicago as far back as 1987, when under the leadership of Laura Guilfoyle, a Minority Outreach Program was started with a grant from the Polk Foundation. Brochures and information sheets were translated into Spanish, support groups were started in minority communities and representation of minorities on our Board of Directors was established. An educational video and a public service announcement in Spanish were developed. In collaboration with the Thresholds Research and Training Center, a Photonovella in English and Spanish was created. A grant from UpJohn provided for the printing of 50,000 copies of the Photonovella, which for the past fourteen years has been offered to Chicago agencies free of charge.

For the past several years, Board Member Denise White has been very active in speaking about mental illness and hosting health fairs in the African American community of Chicago. In 2003, she initiated a Walk during Mental Health month (May) which drew more than 200 participants to raise awareness of mental illnesses in the African American community and plans to make this an annual event.

Today – A Focus on Education:

Providing support for individuals and advocating for improved services has been an ongoing and sustained mission for NAMI of Greater Chicago. Educating our members and the public has also been an important part of our mission over the years. In the mid 1990’s, with the explosion of scientific information about the underpinnings of mental illnesses, NAMIs across the country began developing and providing structured educational programs.

The Family to Family Educational Program, developed by Joyce Burland in New Hampshire, has been offered by NAMI of Greater Chicago since 1995 and we currently offer this life-changing course four or five times each year educating 60-80 family members. This 12-week educational program, taught by trained family members, provides the information and skills families need to cope with their loved one’s illness as well as the opportunity to interact with other families dealing with similar situations in an academic atmosphere of a class rather than in a therapy group. Joyce Burland is now the Education Director at NAMI National and continues to refine and update the course materials to keep the information current.

The tremendous success of the Family to Family Education Program prompted NAMI National to develop an education program for consumers of mental health services. This 9-week course, named Peer-to-Peer, was offered by NAMI of Greater Chicago twice in the fall of 2002. Although the Peer-to-Peer Educational Program was well received, the structure imposed by National for the delivery of the program made it quite expensive to deliver. NAMI of Greater Chicago consumer members wanted a consumer education program and in the fall of 2003, we worked with a selected group of consumers to develop an 8-week educational program which we have named Pathways in Living. We piloted the program with two sets of courses late in 2003. The course was successful and valuable to those who participated. The Pathways in Living course uses a strengths based approach to teach consumers to plan for and enhance their own recovery. After minor updates to the curriculum, we are beginning another set of 8-weeks of classes in late January of 2004 and planning to deliver an additional course in April of 2004.

In 2002, after two and half years of meetings between representatives of NAMI of Greater Chicago, the Chicago Police Department, the Office of Mental Health, and other provider organizations, an incident with a mentally ill person occurred which prompted Chicago’s Mayor Richard Daley to ask the Superintendent of Police what he intended to do to prevent future recurrences. The answer was an educational program being developed by the group described above. Since June of 2002, we have been delivering, on a once or twice a month basis, a three-hour educational presentation at the Chicago Police Academy training all of the recruits who go through the academy – more than 1,000 trained to date. Delivered by an advocate, a mental health professional, a consumer of mental health services, a family member, and an experienced police officer, the program stresses assisting a mentally ill person to get to treatment rather than jail whenever possible and provides useful information to assist officers in protecting themselves.

In 2000, we launched our website at namigc.org. Grant funding from the Chicago Community Trust has enabled us to expand the contents to include many of our informational documents on mental illnesses. Today, Bill Mostovoy and volunteer, Kurt Flechsig, regularly update and enhance our website teaching themselves new skills as the need arises.

In the summer of 2000, Chicago media coverage of several high profile suicides by young women who had recently given birth prompted NAMI of Greater Chicago to develop brochures describing the differences between the Baby Blues, Postpartum Depression, and Postpartum Psychosis. More than 40,000 copies of these brochures have been distributed by NAMI of Greater Chicago in the past 3 years. We also have these Baby Blues brochures in Spanish and these will soon be available on our website.

Following 9-11, NAMI of Greater Chicago developed a fact sheet on Post Traumatic Stress Disorder and distributed this to all physicians in the Greater Chicagoland area.

All of these services and all others offered by NAMI of Greater Chicago are free of charge to the recipients with funding coming from contributions.

Today – A Focus on Consumers:

In the early years, while helping to pioneer this grassroots movement of advocating for persons with mental illnesses, much of the effort of NAMIs nationwide was focused on family members. With improved medications and the stigma surrounding mental illnesses beginning to break down, consumers are more involved in their treatment and more willing to speak openly about their illnesses. In the mid 1980’s, self-help groups for a vast array of medical and social issues were cropping up and by the mid 1990’s consumers became much more involved in the activities of NAMI of Greater Chicago. This includes consumers on staff as well as programs and activities designed for and conducted by consumers. Donna Willey was hired in June of 1998 and was instrumental in developing many of the consumer-focused activities now being offered by NAMI of Greater Chicago.

Once our computers were networked in 1998, Donna began offering computer classes for consumers to learn word-processing and data entry skills. Consumers who took advantage of these classes wanted computers for their home use with their new skill and we developed a computer donation program. Individuals or businesses donate old computer(s), a volunteer checks them out for functionality, and they are given to consumers for their home use. By 1999, when the office moved to its current location of 1536 West Chicago Avenue, more than a dozen consumers had gained computer skills and many were employed on a part-time basis. Others were still volunteering in the office, inputting data and typing word processing documents. This became dubbed the “Job-Readiness” program and more than two dozen consumers have participated and have learned computer skills and most have moved on to gainful employment. With the growing participation of consumers at the NAMI of Greater Chicago office, a consumer council was developed, elected a representative to sit on the Board of Directors, and expanded social activities for consumers. In 2002, a graduate student at the University of Chicago’s School of Social Services Administration had a field placement at the office and formed a support group for consumers that continues to meet in our office every other week under the leadership of staff member Betty Frazier.

Concluding Remarks:

NAMI of Greater Chicago, being a true grassroots organization, began as an all volunteer run organization and has grown to currently employing one full time and five part time staff, while continuing to understand the importance of volunteerism tallying over 11,000 hours annually.

Although it is impossible to list all the things NAMI of Greater Chicago has done since its inception, this brief history helps to show the grassroots movement that has grown over the past 25 years making NAMI of Greater Chicago, Chicago’s Voice on Mental Illness.