Creating Parent to Parent, a Resource for Families of Children With Special Needs

    • October 16, 2015

Originally posted: March 1, 2002
Last updated: October 16, 2015

Position at time of the award: Director, Parent to Parent of Vermont; Winooski, Vt.

Current position: Board member, Institute for Patient- and Family-Centered Care; Bethesda, Md.; and Advisory Council, University of Vermont Medical Center; Burlington, Vt.

“The Supporting Parent program—of training and matching families one-to-one—is an irreplaceable resource for families of children with special needs. It is an essential part of the health care system, and a part which a system of professionals, no matter how sensitive and skilled, cannot provide.”—Director, Children With Special Health Needs, Vermont Department of Health

“After a long day of confusion, lots of information from neonatologists, pediatricians, obstetricians, nurses, social workers, and cardiologists, we received a phone call. I remember a soft, caring voice on the phone saying, ‘Congratulations on the birth of your daughter.’ We were asked if we would like to be matched with another family with a child with Down syndrome. This was our first experience with Parent to Parent. It was such a relief to have that positive human touch after hearing the medical information. After things started getting back to ‘normal,’ I noticed the one consistent thing in our lives was a phone call from Parent to Parent saying ‘How are you? What can we do to help you? Are you getting the services you need?’ Looking back, I see how that connection turned what could have been a devastating and confusing situation into a positive and supportive time for our new family.”—Parent and board member of Parent to Parent

“She listened, she understood, and gave me hope. Nancy has acknowledged our pain and helped us cope with what we face daily. She has implemented programs to make the community aware of the struggles of families. She has given medical students an opportunity to visit with children and their families, and to give them an insight into what it takes to raise that special child. She is tireless when it comes to involving herself in anything related to making the lives better and easier for her families. Nancy is an undaunted advocate for what she believes in. She has put Parent to Parent on the map.”—Parent

In 1976, Nancy Johns DiVenere gave birth to Brett, her third child. Brett joined Jennifer, age 5, and Derek, age 3½. Soon after her son’s birth, Nancy noticed that he seemed to “startle” frequently. Brett also “smirked” rather than smiled, and when excited only his left arm would enthusiastically flail. Brett’s pediatrician was unimpressed with these observations. When Brett was 6 months old, Nancy expressed increasing concern to her pediatrician about Brett’s lack of mobility in his right arm and clenched fist. An exam—and subsequent referrals for additional tests revealed that Brett had hemiparesis, a form of cerebral palsy—and his startles were diagnosed as a seizure disorder.

Brett began early intervention services immediately, receiving weekly occupational, physical, and speech therapy, and his progress was stunning. DiVenere and her family felt supported and informed by the physicians, therapists, and social workers who were now part of their lives.

But DiVenere also felt something was missing from those systems—a way for new parents of children with disabilities or serious chronic illnesses to find each other.

DiVenere had called United Cerebral Palsy of Vermont shortly after Brett’s diagnosis and spoke to the director, who was also a parent. The support of another parent who understood without hesitation what she was going through convinced DiVenere of the need for a formal network of support that could be accessed by any parent wanting to talk to another parent.

Connecting parents to each other. In 1983, DiVenere became a volunteer supporting parent with an emerging initiative in her county called Pilot Parent through which parents experienced in raising a child with special needs, once trained, would be matched with another parent. This initiative would be the beginning of the statewide Parent to Parent program she would create and direct.

Once Brett’s support systems were well established and he was attending school, DiVenere enrolled as a sociology major at St. Michael’s College in Colchester, Vt. She received her B.A., cum laude, in 1985, after completing a thesis on the importance of social support for families with children who have special needs.

In 1986, DiVenere was hired as the Outreach Coordinator for the Chittenden County Pilot Parent Program. With funding to expand parent-to-parent support statewide in 1987, DiVenere became director of Parent to Parent of Vermont. That same year DiVenere was appointed by Governor Richard Snelling to serve as co-chair of Vermont’s Interagency Coordinating Council, to help facilitate the parent voice in designing and implementing a system of early intervention for children from birth to age 3 and their families.

Reaching out to more parents. Beginning in 1988, DiVenere coordinated the annual Vermont Partners in Care Conference as part to Parent to Parent of Vermont to strengthen partnerships among Vermont families, physicians, nurses, social workers, educators, program coordinators, policymakers, and community members—and to highlight the importance of family-centered programs and policies and inclusive communities for children with special health care needs and their families.

One of the regular events at the conference, “Lunch with Lewis,” gives parents the opportunity to share their experiences and suggestions with Lewis R. First, MD, chair of the department of pediatrics at the University of Vermont College of Medicine. First describes the experience this way: “In my first year, I was barraged with unhappy parents who had significant concerns about the way their health needs were being met by our department and other departments in our health care system.

By 1996, ‘Lunch with Lewis’ was a love fest. Families expressed gratitude to both DiVenere and the department of pediatrics for finally enabling us all to work together.”

Taking her work to the health care community. In 1988, DiVenere also joined the advisory board of the Children with Special Health Needs Program, part of the Vermont Department of Health. There, under a federal grant, she participated in the development of a model of care coordination that included Parent to Parent. As a result of this grant, one-to-one peer support was incorporated within Vermont’s health care system and Parent to Parent of Vermont became the first Parent to Parent organization in the country funded by its Title V Children with Special Health Needs Program.

In 1990, DiVenere joined the faculty of the University of Vermont department of pediatrics Interdisciplinary Leadership Education for Health Professionals (ILEHP) program, working with a cadre of faculty to teach family-centered principles, practices, and policies to future health professionals in the fields of nutrition, education, physical therapy, nursing, medicine, public administration, psychology, and social work.

In 1997, DiVenere began to build on the success of the Medical Education Program—a required seminar at the University of Vermont College of Medicine that started in 1985. Through the program, Parent to Parent families are matched with third-year medical students. She joined Jill Rinehart, MD, and Barbara Frankowski, MD, to design Families Involved in Residency Student Teaching (FIRST)—a program matching pediatric residents at the University of Vermont College of Medicine with one of Parent to Parent’s families for the entire three years of their residency.

Her efforts began to attract wide recognition. In 1995, she received the Vermont Children’s Forum Health Award for “tireless advocacy,” and Parent to Parent won Vermont’s Children and Family Services Commissioners Community Award. That same year she was invited to visit the former Soviet Union and assist in the initiation of a peer-support model based on Vermont’s program.

Winning a Community Health Leader award. And in 1998, DiVenere received national recognition by winning a Robert Wood Johnson Foundation Community Health Leaders award. The award came with a $100,000 stipend, and according to DiVenere, gave Parent to Parent valued credibility, a host of new connections, and immeasurable support from the Community Health Leaders program (CHLP) staff and her co-winners.

According to DiVenere, “the honor of being selected as a leader by the Community Health Leaders program is testimony to the work of the families and professionals who have allowed me to serve amongst them.”

Brett has made remarkable progress. He graduated from St. Michael’s College in 2000, following in the footsteps of his father, mother, brother, and sister. He has chosen to pursue a master’s degree in special education to work with children with challenging behaviors.

To DiVenere, leadership requires a passion and a vision—that is, a sense of purpose. “I feel blessed,” she says. At his birth, his mother never dreamed that the chain of events it started would wind up being the blessing it’s become for her. “It’s just amazing,” she admits. “But then, you know, you open yourself up to revelation every day, don’t you?”

Postscript. As director of Parent to Parent of Vermont, DiVenere introduced Family Faculty to the University of Vermont, College of Medicine. The program prepares and supports a cadre of experienced families to teach patient- and family-centered care to medical students and pediatric residents. Vermont’s Medical Education Program was recognized by the Association of American Medical Colleges as the first Family Faculty program in the country.

In 2003, DiVenere and colleagues created Parent to Parent USA, a national nonprofit committed to promoting access, quality, and leadership in parent-to-parent support nationally for families with a member who has a special health care need, disability, or mental health issue. She served as president of the organization until 2011.

Today, she is a member of the board of directors and faculty of the Institute for Patient- and Family-Centered Care in Bethesda, Md., and a consultant to Vermont Children's Hospital Patient and Family Advisory Council.

RWJF perspective. The Foundation recognized the first 10 RWJF Community Health Leaders in 1993—unsung and inspiring individuals who work in their communities, often among the most disenfranchised populations, to address some of the nation’s most intractable health care problems. The last round of leaders was chosen in the fall of 2012. The program closed at the end of 2014. For more information on the program see the Special Report.