Five Questions With: Stephen Brunero

"The coordinators are parents of children with special health care needs who have training and expertise in navigating the systems of care in Rhode Island. "

Stephen Brunero is executive director of the Rhode Island Parent Information Network in Cranston. The agency provides education, training and advocacy for families of youth with special health care needs. Brunero, who has led the organization since 2013, is also an adjunct professor in the graduate school of rehabilitation counseling at Salve Regina University in Newport. He previously served as associate director of the office of rehabilitation services in the R.I. Department of Human Services. Here he describes the network’s purpose and programs.

PBN: What is the R.I. Parents Information Network’s chief objective?
BRUNERO:
The Rhode Parent Information Network is a community nonprofit which for the past 24 years has been dedicated to assisting people in achieving their goals for health, education, and socio-economic well-being. The network is passionate and committed in ensuring the health and education supports for individuals, parents, families and children are available and accessible.
The nonprofit is nationally recognized as a “high performing” health information organization through the utilization of its “peer care coordination model.” In this model, peer navigators, parent consultants, and community resource specialists have navigated systems on behalf of themselves or others engage and assist families, individuals and adults with special healthcare needs or disabilities. Research indicates that parents who receive support from other parents are better able to adjust their child’s health care needs and have better attitudes, increased coping abilities, and greater progress in solving problems.
Today, the network employs 110 people, operates 20 programs and serves over 45,000 Rhode Islanders annually. Its programs and staff are culturally and linguistically appropriate. Our systems of care incorporate comprehensive family-centered, diverse, and universally acceptable programs that are proven effective for all children, youth, and adults with special health care needs in Rhode Island.

PBN: Your organization recently received a $55,000 grant from the Rhode Island Foundation for a “care coordination measurement demonstration project.” What will this project accomplish?
BRUNERO:
The Rhode Island Parent Information Network is grateful to the Rhode Island Foundation for this opportunity to partner with Coastal Medical and the Rhode
Island Department of Health to implement the Boston Children’s Hospital care coordination measurement tool.
The coordinators are parents of children with special health care needs who have training and expertise in navigating the systems of care in Rhode Island. They work collaboratively with the medical team to address the non-clinical elements of a child’s care and family’s needs, such as education, durable medical equipment and eligibility and access to social programs.
This project will document and help determine appropriate staffing levels, time commitment of multidisciplinary care coordination teams, as well as document clinical and non-clinical care coordinating activities received by patients in their practices.
It is expected the demonstration project will highlight the improved health of the patient and overall health outcomes for patients, once care is coordinated in a multidisciplinary team. The network and its partners expect that this project will demonstrate the efficient and productive work that is underway and move the needle toward a family-centered system of care that serves to address the person and family as a whole unit.

PBN: What is your most popular program?
BRUNERO
: The peer navigator model is imbedded throughout each of our programs and is the model which makes the programs and deliverables unique in addressing the needs of individuals and families which we serve.
The network is federally designated by the U.S. Dept. of Education as the parent training information center for Rhode Island and the nationally designated “Family 2 Family” health center. The network’s integrated call center includes “RIREACH,” a call center for Rhode Islanders with health care questions, concerns, or needs, as well as the Resource Center for the Parent Training Information Center.
This year, in partnership with the Rhode Island Department of Health, we sponsored the highly successful “Dare to Dream” conference at the University of Rhode Island attended by more than 800 high school students with special healthcare needs.

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PBN: How many people do the Spanish, Making Connections and the Parents of Miracles support groups serve and what does each group focus on?
BRUNERO
: Groups meet on a monthly basis. Parents of Miracles is for families with children with special health care needs. Making Connections is for families with children who are deaf or hard of hearing. The Spanish Support Group is for Spanish speaking families with children with special health care needs.
Each month, we see anywhere from three to 15 parents participate at meetings and we also correspond with the participants monthly with information, resources and upcoming events for families to keep them up to date on what is going on in the community.
The nonprofit holds a facilitator training quarterly to expand our support groups throughout the state and we are currently working on developing a support group made up of foster and adoptive families. This will hopefully be up and running in the late fall or early winter.

PBN: What types of workshops do you offer and how often do school districts and other organizations seek out your offerings?
BRUNERO:
Some years ago, as a state rehabilitation counselor, I would personally call this network to utilize the advocacy and professional supports which it offered my clients. Today, in partnership with the Rhode Island Department of Education, the network continues to offer families and school districts a wide variety of expert interactive workshops and training opportunities. Our experienced presenters and trainers offer information and support to all Rhode Island families as well as to the professionals who work with families each day.
Workshops include trainings on navigating special education, “Your Rights and Responsibilities,” transitioning to adulthood, bullying, advocacy skills, early childhood parent leadership training, and a healthy lifestyles program for adolescents in partnership with the Rhode Island Department of Health.
The nonprofit offers trainings throughout the year with fall typically being the busiest time of the year for trainings. We receive calls regularly from school districts interested in developing parent and professional collaboration to improve outcomes for children. Schools are also interested in increasing parent engagement in order to develop parent leaders that are able to positively affect systemwide change, and we often find that many school districts routinely send parents to our trainings.
Our most valuable resource, by far, is our passionate and dedicated staff who by their own personal experiences in navigating systems of care are uniquely positioned to make a real difference in the lives of others in need.

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