As I speak with Carrie Richer, one of five regional directors of Waypoint’s Health Care Coordination (HCC) program (previously Partners in Health), it is hard not to be distracted by a picture that hangs on the corkboard behind her. A young man, about fifteen years of age (and all smiles), sits in an adaptive sled used to play ice hockey confidently defying the limits of his spinal muscular atrophy diagnosis. The picture is attached to a letter from his parents thanking Carrie for her help in securing this important piece of equipment that allows their son to thrive in his own unique way.
This is one example of hundreds like it that showcases the critical and life-affirming work of Waypoint staff coordinating the Health Care Coordination program in five regions of the state. Waypoint staff partner with parents and caregivers of children diagnosed with a chronic health condition to help them live their best lives. Health condition management varies from one client to the next. Health Services Supervisor, Janice Boudreau, says, “We have funded everything from a special fire alarm for a hearing-impaired client to the addition of a ramp at a client’s home to campership funds for clients normally unable to attend these healthy recreational activities.”
Every NH family that cares for a child with a chronic health condition, regardless of their income or health care access, is eligible to participate in this program to receive support to help their child meet specific goals developed with their coordinator.
While this program is supported in part through state funding, it can only stretch so far. Each coordinator is separately charged with the challenge of raising additional funds specific to each family’s needs and their commitment to doing so is truly admirable. When additional funds were needed by one family to make their vehicle handicap accessible, Janice got creative and worked with a group of college students to organize a charity baseball game, in the end raising $9,000.00.
The benefits of the program go far beyond financial assistance. Carrie explains that many families need help navigating the school systems and advocating for individual educational plans that meet the specific needs of their children. Coordinators also help families understand the complexities of the health care system as they address medical bills and sort through different eligibility parameters of various plans. Carrie explains, “Often when we first meet with parents, they have just received their child’s diagnosis, are still in a state of shock, and are not able to articulate or even conceptualize their needs. They are afraid to even dream for their child, so we try to meet them where they are at, bring hope back into the equation, and offer suggestions about the different ways they can use the funds to enrich their child’s everyday life.”
Recognizing the comfort in relating to one another, Waypoint staff also organize a few family-support events throughout the year to give parents and caregivers the opportunity to come together and bond on their parallel journeys. “It is always so refreshing for families to be in an environment, if only for a short time, that affirms their strength, empathizes with their struggles, and inspires them to get up and live it again tomorrow”, says Carrie.
On average, regional coordinators work with 40 to 50 families at a time. The need is significant, and the fulfillment of that need is life-changing for hundreds of NH families each year. While pictures of smiling children and thank you notes do much to empower the coordinators in their work, Janice says the best motivation is when “…families that have been served refer other families in need. There is no better measure of our work. It feels good to know we made enough of a difference in their life that they want another family to reap the same benefits.”
