NH Council for Youths with Chronic Conditions Meeting

DATE: June 6, 2026 TIME: 9-2:30

Meeting Location: Parent Information Center Conference Room, 54 Old Suncook Rd, Concord, NH

Meeting Purpose/Goals: Strategic Planning Meeting

Parents

☒ Kristin Bonny, Chair

☐ Karin Mortimer ☐ Jennifer Burbank, Parent ☐ Michele Caswell, Parent ☒ Thaia Dorow, Parent

☒ Regan Lamphier, Parent ☐ Nicole Parker, Parent ☒ Lauren Sirignano, Parent

NH State Advisors/Representatives/Appointed Positions:

☒ Kathy Gray filling in for Deirdre Dunn, BFCS/DHHS ☐ Community-Based Agency Director: TBD ☐Education Department: TBD

☐ Insurance Department: TBD ☐ Katelyn Kuttab, NH House of Representatives

☐ NH Senate: TBD

Professional/Community Organizations (up to 6 members)

☐ Emily Lajoie, NH School Nurse Association ☒ Sylvia Pelletier, NH Family Voices

Meeting Facilitator: Jenn Baker, Aaron Russell Note taker: Aaron Russell, Admin. Support

Agenda
Time	Topic	Category	Leader(s)	Key Takeaways & Action Items
9-11	Where We’ve Come From: Historical Overview	Information	Terry OhlsonMartin	History: -Council name change over the years (originally state advisory on children with chronic illness and disability, governor’s task force on children with chronic illness and their families, council for children & adolescents with chronic health conditions) -First meeting in 1993 -There was no family support or system for just chronic conditions -Originally had 8 families, 4 legislators, doctors, DCYF, department heads Ideas and Money: -Originally got a grant through the Hood Center to create a system for financial and emotional support -Modeled on DD system -Council and Services -Established 3 sites, structure, knowledgeable people, people with power -Once council got going, things also changed as needs got identified, normal to have cycles of rebuilding -Sharing things from the heart and being honest, comes across more genuine to families we support -The mission: serve kids and families falling through the gaps of the system -Top dogs and dept. people on council help to get resources
11:30- 1:30	Where We Are	Discussion	Kathy Gray, Sylvia Pelletier	-Additional administrative oversight from BFCS is not meant to “take over the council”

-NHFV to support restructure/rebuilding -Dept. has revised its approach to monitoring contracts and oversight, change from allocation to reimbursement model

-Working to ensure that the council is meeting its charges and duties

-Membership, comms, and duties

-Keep in mind: advisory to DHHS, DOE, Insurance -No more reporting from DHHS—unless specific information or data the council is looking for -Discussion around the language of asking departments to appoint someone—they are legislatively required under 126J

-Looking within departments to see who would be most effective on the council

-Collab, increasing awareness, technical support (3 depts. Provide data)

-Report, progress on services, who what when

where why how, needs

-Funding, contract with PIC/NHFV for admin support and assistance

-New structure, invoicing, pieces members want to take on

-Additional structure for the year

-Advising vs advocacy, group trainings

1:30-3

Where We Are Going

Discussion/Activity

NHFV Support

Staff, All

-Went over 126J and CYCC structure

-Outlined membership that is vacant, as well as the

PIH sites in NH

-Membership:

(a) one member from NH Senate, by senate pres. (b) one member from NH House, by house spkr.

(d) one member from DOE, by commissioner

(e) one member from Insurance, by commissioner (f) director from community-based agency, charged by the council

				(g) up to 6 reps of prof. and comm. Organizations, by the council (h) up to 13 parent members, by the council (i) one parent appointed by the governor (j) one member less than 30 years of age, by chair of council -Discussed language of membership terms, including what counts as quorum and the requirements for voting -Discussed Right-to-Know and how we can continue to follow it II. Terms of office shall be for 3 years, except legislative members who serve their terms – No member can serve more than 2 consecutive terms – One third of the total members’ terms shall expire annually established in bylaws (need to take a look as we rebuild) Charges and Duties: -Focusing on a more advisory mode and function -More interaction between BCFS, DHHS, funders -Promote, advisory, collaborate, awareness -NHFV support staff walked members through each duty and asked that they think about the activities that meet the charges and how we can accomplish them -Members wrote ideas on sticky notes then they walked through the ideas and NHFV staff answered clarifying questions (noted in minutes but separate strategic planning report to be sent out) To achieve council work: – Outreach for membership recruitment – Member terms, consider rolling terms while we build membership
				–	Outreach 7 members from areas not represented in the state
				–	Make a list of community orgs (epilepsydiabetes)
				–	Consider bylaw changes to address meeting frequency, roles and responsibilities of members, stipend policy, structure of executive committee (committees and chairs), committee roles and responsibilities
				–	Role of the admin and what that work looks like
				–	Parent led events
				–	What kinds of questions we should ask/what data we should look for

Next Meeting: August 2026 TBD