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The Roadmap program partners were an integral part in helping develop the Roadmap to Peer Support. Seven well-known peer support programs in the United States shared information about their programs and offered their experiences, including success stories and challenges. This section describes these programs.
Dee's Place Start-up Story
Dee’s Place, a project within the Historic East Baltimore Action Coalition, began in 1998 when Miss Dee, a community leader, had a vision that those seeking recovery from alcohol and substance abuse addictions needed a place for support during the night and on holidays and weekends. With support from local funders, Dee’s Place was opened (from 9 p.m.–9 a.m.) on Madison St. and eventually moved to 2222 Jefferson St. for meetings at the Men’s Center. In 2012, Dee’s Place was again moved to 1212 N. Wolfe St. and turned over to Miss Corliss Jones. Miss Dee also believed that there was a need for a holistic approach to recovery. In the spirit of her vision, the program expanded to providing services and referring people for housing, employment, transportation (tokens and referrals to Vehicles for Change), mental health, food, and clothing. Currently they have added HIV and Hepatitis C testing via the Sisters Together and Reaching (STAR) van that comes to Dee’s Place twice a month.
NAMI (National Alliance on Mental Illness) Start-up Story
Founded in 1979, NAMI was created when Beverly Young and Harriet Shetler, two mothers of sons diagnosed with schizophrenia, organized a national meeting in Madison, Wis. Two hundred and eighty four individuals came from 59 different scattered family support groups from 29 states to found NAMI, the first grassroots organization representing families and individuals living with mental illness.
NAMI has been the driving force behind a national investment in lifesaving research, parity for mental health care, increased housing and initiatives to ensure that treatments and services are available to those in need when they need them most. NAMI’s awareness efforts have successfully addressed the stigma of mental illness, ensuring a decrease in barriers to treatment and recovery. Education programs have served hundreds of thousands of families and individuals. And NAMI’s efforts continue to expand to meet the challenges of a changing world by supporting virtual communities of help and hope to millions through NAMI.org and NAMI’s social media channels.
What began as the basis for the organization—the grassroots, families and individuals impacted by a shared lived experience—remains the foundation of NAMI today. NAMI leaders, members and supporters are known for their tenacity and fierce commitment to improving the lives of individuals affected by mental illness.
The Parent Connection Start-up Story
The program started in 1991, when the Department of OBSTETRICS/GYNECOLOGY (OB/GYN) at Beth Israel Deaconess Medical Center (BIDMC) recognized the importance of providing our patients follow up support after discharge from our postpartum units. BIDMC has a long tradition of providing excellence in patient care, and patients would often call the nurse who cared for them on the postpartum unit with questions after they went home. The OB/GYN department leadership had learned of a similar program at a hospital in Michigan- and always eager to embrace innovative, creative ideas- was the source of primary support in getting this program off the ground. Seed funding for the first year of the program came from an annual grant available through Friends of BIDMC, which uses proceeds from the gift shop. The OB/GYN department has funded the program since then.
Parent 2 Parent, USA Start-up Story
The first Parent to Parent program in the U.S. was founded by Fran Porter, a parent, who collaborated with Shirley Dean, a social worker, in 1971 and petitioned the Greater Omaha Arc in Omaha, Nebraska to establish Pilot Parents of Nebraska. The program allowed parents of children with disabilities to share information and emotional support with other parents through a one-to-one match.
In 1974, Patty McGill Smith joined Pilot Parents and with her leadership received a regional developmental disability grant to help establish Parent to Parent programs in Nebraska, Iowa, Kansas, and Missouri. Within two years there were local programs in these four states, and parents across the U.S. were calling Pilot Parents of Nebraska for information on setting up a Parent to Parent program in their own community.
For 36 years the Parent to Parent movement made steady progress, with the growth of many statewide, regional and disability- specific peer support programs. In an effort to learn more about this movement and to study its impact, Ann and Rud Turnbull, Co-Directors of the Beach Center on Families and Disability hired Betsy Santelli in 1992 to conduct a national survey of Parent to Parent program administrators to learn about their structures, services, funding, and answers to many other questions. Between 1992 and 2002 Betsy Santelli served as a vital link for Parent to Parent program directors across the country, offering guidance and materials based on survey findings, and connecting more experienced programs with emerging ones.
Parent to Parent of the United States (Parent to Parent USA) was created in 2003 with funding from the Robert Wood Johnson Foundation to ensure that families nationwide whose children have special needs have access to Parent to Parent support.
Stanford Health Care Peer to Peer Start-up Story
In 2008, Joan Forte founded the Stanford Patient and Family Partner (PFPP) program. One of the first Patient and Family Advisory Councils, the Heart Transplant PFAC, set as an early goal the establishment of a peer to peer program. With the impetus of their advocacy, Joan created a team of patients, families, social workers, advance practice nurses and graduate students who designed the program after doing their own search for resources to guide them. This co-development process resulted in the program’s launch in 2011. Expansion into women's cancer and the establishment of the Woman to Woman Program was initially funded by a seed grant from the Ovarian Cancer Research Foundation. After that grant expired, Stanford Health Care Administration continued to support the program and anticipates continued growth into other clinical areas. A unique component of the program is the utilization of the supervision model, in which the social work coordinator provides ongoing training to the mentors. The program remains a strong foundational element of the Stanford PFPP that now has over 150 patient and family volunteers.
Today the Stanford P2P is co-supported by the Department of Social Work and Case Management and the Patient Experience Departments
Survivors Helping Survivors Start-up Story
In 1997, when Lillie Shockney became the Director of the JH Breast Center, she contacted the American Cancer Society’s Reach to Recovery program, which enables new patients to contact an ACS volunteer to ask questions. As a survivor herself, Lillie became a Reach to Recovery volunteer in 1993, which gave her the opportunity to visit other breast centers in Maryland, and learn about their programs. The Reach to Recovery program allowed volunteers to meet with the patient once, directly after their surgery, but Lillie noted that before the surgery is when most patients have questions. After talking to Reach to Recovery organizers, Lillie decided to start a new program.
Lillie selected 5 breast cancer survivors who were out of treatment for at least 3 years and asked them if they would be willing to volunteer to work with patients on an ongoing basis. She found that after treatment was complete, the new survivors asked her if they could become volunteers. The program is funded through grants and philanthropy.
Weight Watchers Start-up Story
Weight Watchers was founded by weight loss pioneer Jean Nidetch. In 1961, desperate to lose weight, Jean Nidetch attended a New York City obesity clinic and found a critical component to be missing: connecting with others who wanted to lose weight and leadership from someone who had successfully done so. She used what she learned from the obesity clinic to begin weight-loss meetings with a group of her overweight friends in her living room in Queens. This is where the model of the Weight Watchers meeting was born: a community of people working towards the same goal of losing weight and developing a healthier lifestyle, facilitated by a passionate leader who had successfully done so herself.