Parent to Parent USA – A Partner in Family Involvement: An Interview with Nancy DiVenere

By Librada Estrada
Associate Director, Leadership & Workforce Development, Family involvement, AMCHP

Nancy DiVenere, co-founder of Parent to Parent USA (P2PUSA) and the current president, was the executive director of Parent to Parent of Vermont, a statewide organization she founded in 1987, until 2004. AMCHP CEO Michael Fraser recently presented at the P2PUSA Directors Meeting and P2PUSA has been invited to join the AMCHP Family & Youth Leadership Committee as an organizational representative. P2PUSA will be represented by Laura Warren, board secretary and co-director of Parent to Parent of Texas.

We are interested in learning more about Parent to Parent USA – can you tell me about it?

The parent-to-parent movement got its start in 1970 when the first parent-to-parent match occurred over a kitchen table between two parents connecting about the concern of institutional placement. Since that time, every state has seen a rise in formal local, regional, hospital, clinic or Medical Home based and/or statewide Parent to Parent (P2P) programs.

Research was published in the late 1990s on the efficacy of parent-to-parent matching when following a particular model of training, matching and follow-up evaluation. In 2005, Parent to Parent USA incorporated to promote access, quality and leadership in parent-to-parent support across the country using that model. Parent to Parent USA provides a forum for emerging and experienced P2P organizations to learn from one another about designing, developing and sustaining successful programs, as well as researching and implementing evidence-based practices. P2P leaders exchange knowledge, experience and resources via a state-of-the art website and biennial Directors’ Leadership Meeting.

Throughout the evolution of the disability movement, the one thing that remains a constant is that parents need and deserve the unique emotional support offered by P2P programs. It’s tough work...and our leadership meetings allow parent leaders the chance to learn from each other in a comfortable and accepting environment. We share challenges and solutions and come away from these meetings with the camaraderie and validation to persevere...our national meetings help ensure P2P programs will be available to the hundreds of thousands of families that need us!

Debi Tucker, Executive Director Parent to Parent of Georgia – September 2011 P2PUSA Denver Leadership Meeting

P2P organizations offer parent-to-parent support as a core resource for families with children who have a special health care need, disability or mental health issue. These organizations recruit, prepare and match Support Parents with families seeking the support of an experienced parent. Support Parents are prepared to listen and respond as only another parent can, to questions, concerns, fears and uncertainty, as well as to support and celebrate milestones, transitions and other life events. They have navigated the health-care and education system. They know the daily challenges, what works best in their community for their child and are prepared to pass their knowledge, skills and experiences on to others. Support Parents unravel the maze of services and supports from early intervention to independence. They are guides, navigators, coaches and patient advocates; reliable allies "on call" to families when support is needed most.

Today, over 33 states have identified statewide Parent to Parent program, 28 of which are Parent to Parent USA alliance members following evidenced-based peer matching protocols. The remaining states, including those who have not already identified a statewide Parent to Parent program, receive technical assistance from P2PUSA upon request. P2PUSA also hosts two listservs; a Directors’ Listserv offering a forum for communication amongst directors nationally and a Matching Listserv allowing matching to occur across state boundaries.

How can Title V programs work with P2PUSA in the states? Do you have any good examples of states where this is going well?

Many of the Parent to Parent USA alliance members collaborate with their Title V programs in a variety of ways. For example, Wisconsin has developed the Collaborators’ Network, a system of support for children and youth with special health care needs that is interconnected. Parent to Parent of Wisconsin is a member of this network and receives funding from the state Title V program and is contracted with the Medical Home Hub to develop parent partnerships.

In Virginia, the state and local Title V programs have contracted with Parent to Parent of Virginia since 2002 to develop products, conduct training for families and Medical Homes, provide emotional support to families receiving care coordination, and to serve on state committees and task forces.

Vermont Family Network (VFN), formerly Parent to Parent of Vermont, has had a contract with its Title V program since 1989 to support the VFN mission of promoting the health, education, and well-being of all children and families, with a focus on children and young adults with special needs. Vermont Department of Health Title V funding provides support for P2P matches, training, resource development, a statewide Helpline, regional family support staff sited in their communities, and family-to-family support groups across a wide variety of diagnoses and special needs. This funding also allows VFN to teach medical students about children and youth with special health care needs; provides "family voice" in policy development and program quality assessment; supports the integration of children’s services and the development and implementation of Medical Homes within the Vermont Blueprint for Health; and more. The Title V resources are leveraged by the federal Family-2-Family Health Information Center (F2F HIC) moneys to create more comprehensive and statewide resources.

What is the value of parent to parent connections? What do Title V leaders need to know?

Trust, responsiveness and reciprocity characterize Parent to Parent organizations. Most P2P organizations began as grassroots initiatives, building a network of well-prepared, knowledgeable, experienced, trained Support Parents who offer emotional support, information and guidance in accessing resources to solve problems and overcome barriers and obstacles. Shared wisdom and experience is the driving force of Parent to Parent organizations with families relying on one another for support while organizations develop programs and partnerships and secure funding in response to what they learn from families. Many P2P programs hire staff from the communities they serve; have multi-cultural staff; and speak a language other than English. Parent to Parent organizations are designed to support families and individuals across the life-span; those receiving support become the givers of peer support. Leaders of Parent to Parent organizations and families in their networks are a wealth of knowledge, experience, and wisdom in connecting, listening to, and supporting families and preparing them for leadership roles in their communities. Parent to Parent statewide organizations can assist Title V leaders in understanding and addressing the unique and varied concerns and needs of families with an individual who has a special health care need, disability or mental health issue living in rural, underserved, minority communities throughout the country.

How does Parent to Parent USA work with Family Voices?

Just as the relationship between statewide Parent to Parent programs and Title V offices vary across the country, so too do the collaborations between statewide Parent to Parent organizations and Family Voices programs. The most notable connection between the two organizations at the state level is through the funding of F2F HICs and the unique role the organizations play in carrying out not only the requirements of the funding, but their mission as well. Many Parent to Parent organizations receive F2F HIC funding, including AZ Raising Special Kids, Parent to Parent of Georgia, Parent to Parent of NYS, Texas Parent to Parent, Vermont Family Network, Oklahoma Family Network, Family Connection of South Carolina and others. In 20 states, the Parent to Parent and F2F HICs are co-located, including Indiana, Kansas, Maine, Nevada, New Jersey and New York. The benefit of co-located Parent to Parent and F2F HIC organizations is that families have access to evidence-based, parent-to-parent support described by Family Voices co-founder Polly Arango at the celebration of Parent to Parent USA’s first anniversary in 2005 as "the cradle of parent leadership".

For more information about Parent to Parent USA, visit their website or contact Nancy DiVenere or Kathy Brill.