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A Fighting Chance for Families
A Fighting Chance for Families
Families with one or more children diagnosed with chronic health conditions are seen as being intrinsically strong, but what others don’t always realize are the steps a family has to take to appear that way. Family Support coordinator Janice Boudreau helps families who have a chronic health diagnosis along that journey.
Chronic health conditions include but are not limited to cancer, cerebral palsy, asthma, muscular dystrophy, diabetes, spina bifida and epilepsy.
Janice has been a Family Support coordinator for the Partners in Health program for 18 years. The program works to meet the needs of the child and their family in caring for them. Janice explains that “Waypoint’s philosophy for helping families is different. Waypoint is very motivated towards family-centered support, and works in collaboration with the families to determine and achieve their goals.”
Nothing is off the table for ways in which the coordinators choose to help families. Whether it’s finding overnight lodging when a child is receiving cancer treatment in Boston or art classes for a child with muscular dystrophy, Waypoint encourages its coordinators to assist with elements of support that best meet the needs of their clients.
As an example of this, Janice just finalized getting a fire safety alarm for a household with two deaf children. The alarm included installing lights that flashed bright enough to get the children’s attention, as well as a bed shaker that would wake the children if a fire occurred while they were sleeping. Janice and the children’s mother worked together for months to piece together five different grants that would ultimately cover the costs of equipment and installation.
Not only does Janice spend a large portion of her time using her experience and knowledge of resources to piece together options that will best suit her clients, but she also spends her time negotiating and convincing the right people how and why certain grants or funding are important to supporting her clients.
While insurance covers some costs, for the majority of families there are tremendous expenditures that can devastate them. The work Janice and the other Family Support coordinators do is essential to minimizing the risk and loss for families as well as advancing the well-being of the child and their family.
There are six sites under contract with Waypoint: Littleton, Lebanon, Laconia, Conway, Lancaster and Janice’s site in Concord. Although each team member has their own location, their teamwork and information sharing are critical to meeting the needs of their clients, of which they each have an average of 50 to 60 families (Janice, however, has around 75).
Each coordinator has a “special gift,” as Janice calls it, that helps them do their job. All of the coordinators are parents, and several are parents of children who have chronic health conditions.
“It’s a different kind of connection,” Janice says about families who deal with the same situation that hers did. As much as they try to keep their personal life separate, their compassion for families comes through.
She remembers an instance when her son was younger and wanted to help a younger client who was scared to get bloodwork done. Janice asked permission for her son to talk the child through something he had done many times before. Not only did the child get through that bloodwork, but he overcame his fear of needles altogether. Seeing children and families help one another is one of the best parts of her job.
The hardest part of the job is undoubtedly when a child passes away. “That’s the part of the job where we break the rules and apologize later,” Janice says. Technically, once a child passes away, their family no longer qualifies for the program, but none of the family support coordinators leave the family behind during their grief. Janice typically helps organize funeral expenses and outlying medical expenses for the child right away, but she remains a resource for families down the line who need to talk to someone who understands.
The work Janice and Partners in Health do for families with a chronic health diagnosis is life-changing. The most fulfilling parts of her job are the “Hail Mary” moments. Janice never promises anything she can’t deliver, but there are instances when she’s not sure if she can pull something together–and then she somehow manages to get what the family needs despite it all. Those moments and witnessing the effects it can have on the families, even after they’ve left the program, is what makes the job worthwhile for Family Support coordinators like Janice.
For many families, having someone to provide resources on affording medical expenses and providing a support system through their transitions make all the difference in staying afloat when there’s more than enough to sink the ship.
In July, Waypoint expanded Partners in Health into the Seacoast area. This is a significant development to meet the needs of children and preserve families in New Hampshire. For further information on the work, Janice and the team do, visit our Partners in Health webpage. To support programs like Partners in Health, you can give to Waypoint here. Interested in becoming a Changemaker like Janice? Join our team.