The History of the Parent to Parent Movement
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, a program in which parents of children with disabilities could 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. This initial study led to the development of ongoing support for Parent to Parent efforts. 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.
Since 1986, Parent to Parent programs attempted to have a conference every other year. The conference served as a place to discover new best practices and re-energize around common missions. The conferences started in Nebraska in the early years and progressed to where a statewide program would sponsor the conference every other year, trying to hold the conference throughout the United States. Washington State served as host in 1986, Kansas in 1988, Florida in 1990, Arizona in 1992, North Carolina in 1994, New Mexico in 1996, Georgia in 1998, Nevada in 2000 and Pennsylvania in 2002. As these conferences grew, the added dimension of Statewide Directors’ Meetings were paired with the conferences. The need for Directors to meet annually was responded to by the Beach Center who generously assigned the coordinating of these meetings to Betsy.
Betsy Santelli was the touch-point of the Parent to Parent movement for many years. Her untimely death in 2002 came on the heal of two milestones in the Parent to Parent movement; the publication of The Parent to Parent Handbook by Brookes Publishing Company in 2001, and funding from the Robert Wood Johnson Foundation to strengthen and coordinate national efforts to ensure access to community based support for families with children who have special needs throughout the country.
Parent to Parent USA
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. Founders and affiliations: Nancy DiVenere, Parent to Parent of Vermont; Mary Slaughter, Raising Special Kids, AZ; Kathy Brill, Parent to Parent of PA; Connie Ginsberg, Family Connection of South Carolina.
Parent to Parent support – the matching of experienced, trained Support Parents with families seeking support has been proven effective in helping families cope with their day to day lives, connect with community resources and navigate the health care system. Parent to Parent USA has identified and connected all statewide Parent to Parent programs nationally, a first step toward forming an Alliance among all family support programs in the country that demonstrate the following:
- Parent to Parent support as a core organizational component
- Commitment to implement Parent to Parent USA – endorsed practices
Parent to Parent USA was incorporated as a 501(c)(3) in 2006. Since this date the P2PUSA Board of Directors has met bi-monthly to review, advise and implement mission driven, membership advised policies and practices. In October 2006, with funding from key partners including Maternal and Child Health, the Beach Center on Disability and Family Voices, Parent to Parent USA hosted a meeting attended by 27 Statewide Parent to Parent program directors. In June 2009, Texas Parent to Parent hosted the Parent to Parent USA Directors’ Meeting attended by thirty-eight program staff representing 21 emerging and established statewide Parent to Parent programs. Colorado Parent to Parent hosted the P2P USA 2011 Director’s Meeting (now dubbed the P2P Leadership Institute), followed by South Carolina’s Family Connection hosting in 2013. In 2015, Arizona’s Raising Special Kids hosted, and in 2017 Connecticut PATH is hosting.
Nancy DiVenere BA, St Michael’s College, was, until 2004, the Executive Director of Parent to Parent of Vermont, a statewide family support and leadership organization she founded in 1987. As Director, Nancy introduced Family Faculty into the University of Vermont, College of Medicine preparing and supporting a cadre of experienced families to teach patient- and family-centered care to medical students and pediatric residences. Vermont’s Medical Education Program was recognized by the Association of American Medical Colleges as the first Family Faculty program in the country. In 1998, Nancy was honored by the Robert Wood Johnson Foundation with a Community Health Leadership Award as one of ten individuals in the country “changing the shape of health care in America.” In 2003 with funding from the Robert Wood Johnson Foundation Nancy and colleagues created Parent to Parent USA serving as President until 2011. Nancy had been a member of the Board of Directors of P2P USA and remains Faculty for the Institute for Patient-and Family-Centered Care in Bethesda, Maryland.
Nancy was inspired by the birth of her son Brett whose early years were compromised due to a birth injury.
Tribute to Polly Arango
By Nancy DiVenere
(January 23, 1942- June 26, 2010)
Personal Reflection: Polly and I first met at an Association for the Care of Children’s Health (ACCH) conference in Nova Scotia, in the late 80s. Polly was then director of New Mexico’s parent to parent organization, Parents Reaching Out. Directed by Bev Johnson, ACCH was the first national health organization to invite families as colleague to a national conference – and there was Polly– welcoming, mentoring, leading – galvanizing the voices of parents whose children had special health care needs and disabilities. A visionary like no other, Polly lead the creation of Family Voices, a powerful national voice on behalf of families. Polly was a magical, passionate, fearless story teller, standing before crowds that included Presidents, first ladies, national policy advisors, hospital administrators, leaders in countries far outside the USA – and her favorite audience, families.
2005 Polly Arango joins P2P USA in celebrating its 1st Anniversary at meeting hosted by Raising Special Kids, Phoenix, AZ
Polly’s loyalty and love for the parent movement meant that whenever invited, no matter how busy her schedule – she would do all in her power to be where she was needed. Gratefully, Polly traveled to Vermont on several occasions, sharing her wisdom as keynote speaker at Parent to Parent of Vermont’s Partners in Care Conferences. Polly helped to create Parent to Parent USA as a national organization. Polly traveled to Phoenix, Arizona in January, 2005 to celebrate P2P USA’s 1st anniversary. Polly encouraged, supported, and offered wise council to our emerging national organization. Polly spoke passionately about the role of parent to parent support in leadership development, stating that “parent to parent support is the cradle of parent leadership”. Polly’s gift of friendship and love, and legacy of leadership is embodied within the parent to parent movement – we are all forever grateful.
P2PUSA Board of Directors & Polly Arango
Polly was the founding Director of Family Voices where the Polly Arango Memorial Fund has been established to support emerging parent leaders. Click here www.familyvoices.org