In June 2015, Jacqui and Adam Silvani heard the words that no parent wants to hear.
“Your child has cancer.”
Thus began an 18-month journey for Joe, now age 4 and nicknamed “Super Joe,” as he battled Stage IV neuroblastoma. The social worker at Boston Children’s and Dana Farber Cancer Institute, where Joe was treated, knew little about services in New Hampshire. She did, however, know about Partners in Health, a program for families who have a child with a chronic health condition.
Jacqui was put in touch with Kerry Smith, then coordinator of Partners in Health at Families First Health & Support Center in Portsmouth.
“I remember Kerry coming to the house and sitting with me, helping me fill out the applications for Medicaid and for Home Care for Children with Severe Disabilities,” Jacqui recalled. “She helped connect us with a program to help pay our insurance premiums, which were out-of-pocket as I had taken a leave of absence from teaching to be with Joe during treatment. She was such a support to my family. Without her we would have never known the things available to us.”
As Joe was nearing the end of his treatment protocol, the Silvanis received an email saying that Kerry Smith was leaving her position at Families First. “I was starting to think about going back to work but not knowing how I could do that with a medically fragile kid,” says Jacqui. “I knew Joe was going to need outpatient treatments in Boston, and that can be tricky when starting a new job. Teaching just wasn’t going to fit in the way we needed a job to.”
Enter Georgie Clark, Family Services Director at Families First. She suggested that Jacqui apply for the Partners in Health coordinator job.
Jacqui liked the idea. Besides the fact that the job offered more flexible hours than teaching, says Jacqui, “I wanted to be able to give back. We were so overwhelmed at the beginning, and Kerry was able to take some of the stress from us. I knew what a lifesaver that was for us, and I wanted to be able to do that for other families. I’ve been there. I’ve been through the strain. I felt like there was a lot of experience I could offer to other families.”
With an extensive background in education – she taught school for six years before Joe was diagnosed – Jacqui is able to help families navigate the special education process as well as the health care system. “It can be very confusing, and kids with chronic health conditions can be offered services through the school,” she says. “It’s not just for academically needy students. Parents may not realize that the long-term effects of treatment, or the acuity of a child’s allergies or asthma, warrant an accommodation plan.”
In addition to her work experience, Jacqui has a bachelor’s degree in Early Childhood Development from National University and master of education degrees in elementary education and reading from UNH.
Partners in Health is a statewide program for families who have a child (age birth to 21) with a chronic health condition that impacts daily living. Families in the program receive information, support, referrals and financial assistance. They can also participate in the Partners in Health Family Council, which plans family activities.
Families First’s Partners in Health site serves families in eastern Rockingham County. For more information, contact Jacqui Silvani at (603) 422-8208 ext. 146, email her at firstname.lastname@example.org, or visit tinyurl.com/Fam1stPIH