Newsletter Archive: November 17, 2009

The following story is highlighted as part of Champions’ "Star Community" Recognition Program, which identifies communities that are good models of community-based service systems.

Northwestern Vermont is made up of Franklin and Grand Isle Counties and is comprised of 720 square miles of land and 167 miles of water. This includes unique landscapes such as the northeastern slopes of the Green Mountains, four islands, and a peninsula that extends south into Lake Champlain from Quebec. 

A Culture of Community

Franklin and Grand Isle Counties are considered one community and are served by many of the same services, agencies, and providers. Due to the rural nature of this region, providers who serve children and youth with special health care needs (CYSHCN) in both counties have become very collaborative. The local Parent Child Center Program Supervisor, Elizabeth King, said that she views these relationships as a unique culture of their own – “a culture of service provider community.”

One of the eleven pediatricians that serve this rural area, Dr. Fred Holmes, recalled how he began his journey into family centered care and medical home. Dr. Holmes invited seven families to form a family advisory group for his Mousetrap Pediatrics practice. He wanted to create a visual algorithm to try to address the ever-looming question, “Are children and their families getting the services they need?” Dr. Holmes and several area service providers engaged the families in detailed discussions about the challenges they had or were facing. The parents came up with a list of concerns. From this list the top three were chosen and the families came up with the following recommendations: 1) Have a supporting parent/partner to assist them right from the start and whenever needed, 2) Care Books: an organizational portable tool to help families keep their child’s pertinent records organized, and 3) A local Child Development Clinic so that families do not have to travel so far to have their child evaluated. Ten years later, the community has been successful in meeting these goals.

A grant was applied for (and received) so that parents would be able to apply for stipends to help defray the cost of attending future meetings and for a parent liaison/resource coordinator position to be formed. A collaborative partnership with Parent to Parent of Vermont led to the hiring of parent liaison, Betty Morse, as the Family Resource Coordinator for the community. A regional group was formed and regular monthly discussion meetings were held with parents and service providers.

Family-Centered Care and the Medical Home Model

Some of the Vermont Team

Mousetrap Pediatrics has also been one of the sites of a project called “Whatever It Takes” (WIT), sponsored by the University of Vermont’s Department of Social Work. This program gives internships to four social work students to spend class time each week doing service in Franklin/Grand Isle Counties with children and/or families. An experienced social work supervisor from the University of Vermont oversees the students. Dr. Holmes said his goal when a family who has a child with special health care needs is referred to the WIT project is that the students will form relationships with the families and help the families form relationships with their community providers to ensure that the child receives high-quality, coordinated services within the child’s “medical home.”

Betty Morse said, “We are building a community medical home. We need to take the time to listen to families and treat them respectfully. All agencies in our community are learning to share this philosophy.”

The aforementioned unique “culture” in the community also contributes to a successful medical home model. Dr. Holmes emphasizes that referrals between agencies are not made through the use of a secretary or other assistant to the physicians. In most cases, Dr. Holmes himself will make the call directly to the director of the program the child needs and explain the family’s circumstance. This results in a direct contact from the program to the family, usually within 24 hours. Families can rest assured that there is a large amount of coordination going on between their primary care physician and any other specialty services their child might need. Physicians themselves perform developmental screening for the children they see as patients in their offices. In addition, the offices also collaborate with the Early Intervention and Early Childhood School Programs that also do developmental screenings in the area. In addition, the local WIC (a Department of Health program), which sees a good percentage of families with younger children in the community, will make screening and medical referrals.

Fitting the Service to the Family

Another example of the efforts Franklin and Grand Isle Counties are making to integrate services is the local Parent Child Center. The Center strives to bring services together for families of young children, ages 0 to 6, by visiting them at their homes or wherever they are most comfortable.

Because the Center is co-located, Elizabeth King, Parent Child Center Programs Supervisor, says that they are very in tune with all programs that serve families and children. The organization fits right into the aforementioned “culture of community” by working with these programs to satisfy the family’s needs. One of the first steps they take with a newly referred family is to sit down and discuss their current necessities. “We’re making services fit the families,” says Elizabeth King. Some of the programs that are housed within the Parent Child Center are the Part C Family Infant Toddler program, the Part B Medicaid program for children with social, emotional, and behavioral difficulties, and the Healthy Babies program.

Empowering and Supporting Parent

The Vermont Family Network is a merged organization of Parent to Parent of Vermont and the Vermont Parent Information Center. Their purpose is to empower parents, families, children, and adults who have, or are at risk for, special needs to be effective advocates for their health, education, and well-being. They provide information, support, advocacy, and promote family-centered policies and practices. Both of these newly merged Vermont organizations were created in the 1970s by parents for parents and have grown over the years. Betty Morse has been working in the role as parent liaison/parent support/family resource coordinator/family support consultant in Franklin/Grand Isle Counties for almost 10 years. Betty said, “The Vermont Family Network does many things for families in Vermont. We support and help them navigate medical, developmental, and mental health systems. We also support parents as they learn about the special education process and how to navigate within that system.” Vermont Family Network is also the home of PIRC Vermont whose purpose is to help children of all ages succeed in school. They do this by helping families from all walks of life to actively participate in their child’s education and by supporting schools in their efforts to build strong partnerships with parents. Betty says, “Franklin and Grand Isle counties are my community. I live here and I am part of the community culture. I work hard to listen to parents/caregivers and support them as they define support. I meet parents ‘where they are’ and go from there.”

Unique to this community is The Supporting Parent Team coordinated by Betty. These trained parent volunteers meet monthly to network, do Vermont Family Network outreach, and plan activities and family events. Parent-to-parent support is the heart of what the team does. Betty said, “We have support groups running that are parent led in the region. The family leaders collaborate and we all work hard to support parents and caregivers in our region.”

One activity planned by the team is a “Mother’s Respite” where mothers get to plan a social activity for themselves and other moms of CYSHCN as a way to enjoy a break from everyday life. Tammi Gregoire, a parent of two children with special health care needs, says of the Supporting Parents Team and Mom’s Night Out, “these groups help build hope, faith, and friendship to parents who have children with special needs.”

Evolving Advisory Councils

The advisory council in Franklin and Grand Isle Counties has been successful over time in bringing professionals and families together. Parents and providers on the Parent Partnership council meet monthly to articulate a definition of a system of care for the Children’s Division at the Mental Health Center as well as for the Parent Child Center.” Betty Morse emphasizes that these meetings are extremely empowering for parents because they are able to participate at the program level and give their valuable input as to what works and what doesn’t.

The important thing to note is that each provider that serves children with special health care needs in the community has active parent partners on their individual boards, resulting in an array of family voices lending their expertise. Because of this, all facets of the community benefit from useful parent input.

The Secret to Cultural Competence

When asked about cultural competency within the community, Dr. Holmes expressed an enlightening perspective: “The secret to culture is being fully comfortable with what you yourself don’t know.” He went on to say it is important to be willing to have conversations with people from different cultures and learn about them. Elizabeth King describes this as “humanizing experiences” and making a sincere effort to be genuine with the person you are working with.

The Grand Isle and Franklin County community reflects these theories about cultural competence. For example, service providers in the area have the opportunity to participate in immersion training with the local Abenaki Nation Native American tribe. This three-day training gives providers a chance to be welcomed into the Abanakee culture and learn about their history and way of life. It also opens up opportunities to discuss what the community can do as a whole to build trust.

Transition for All Youth

The community has a variety of services that help children and youth both with and without special health care needs transition through various stages of life. The Parent Child Center addresses transition through their teenage pregnancy and parenting education program. They encourage these young mothers to continue their education and develop parenting skills with the overall goal of helping them realize their potential and worth.

The Mental Health Program helps the youth they serve with job and life skills. Along this same track, the local Vocational Rehabilitation program has a transition coordinator who travels to the youth’s Individual Education Plan (IEP) meetings, and who helps the youth connect with potential jobs.

The community strives to empower the parents when it comes to transition. Ownership of medical records, a critical need identified by parents years ago, is instrumental in preparing parents and youth to plan for their futures. This makes it possible for the parent to be a successful, knowledgeable advocate for their child, no matter what transition they may be encountering at that time.

A “Star” Community

The community that encompasses Franklin and Grand Isle Counties is excelling in many different areas when it comes to providing coordinated services for families of CYSHCN. The one thing that makes them a “gold star” among communities, however, is their tireless concern for those families they serve. As Elizabeth King says, “When I walk in the door every morning, I remember how honored and privileged I am to work with this staff. [Providing services to CYSHCN] really is the core of who they are. They’re not just collecting a paycheck, they are there because they have a passionate commitment to children, families, and the community.” Betty Morse seconds this by saying, “We are extremely lucky to have such committed and caring providers.”

Community Contacts:

Betty Morse, Family Support Consultant
Vermont Family Network
1-800-800-4005-ext. 201

Dr. Fred Holmes, Pediatrician
Mousetrap Pediatrics
1-802-547-8189