Meeting Minutes

Time: 5:30 - 7:30 pm

Date: May 18, 2022

Location: Zoom


Council for Youths with Chronic Conditions

May 18,2022
Zoom meeting 5:30-7:30


Audrey Gerkin, Karen Livernois, Leah Stagnone, Laurie Fleming, Nicole Parker, Deodonne Bhattarai, Jennifer Bertrand, Regan Lamphier, Karin Mortimer, Representative Betty Gay, Terry Ohlson-Martin, Heidi Petzold, Joshua Hilliard, Iain Wall, Stephanie Locke, Melissa Hardy

Presentation: Emergency Preparedness and Response for Children with Chronic
Conditions Stephanie Locke, Public Health Emergency Management within NH DHHS

Bureau of Emergency Preparedness, Response and Recovery (EPRR) Overview

● Lead preparedness activities that empower DHHS divisions and state and community
powers to operate and support a response to public health emergency
● Develop protocols, structures to enable response and recovery before, during and after
event through training, planning, documentation, and protocol development
● Lead coordination in delivery of key health and human services in emergency
● Facilitate deployment of physical assets, behavioral health supports
● Strengthen capabilities and collaborative potential with regional and local networks and
other partners through execution of established federal and local programs as well as
novel activities
● Maximize opportunities for funding and leverage available funds to improve state
readiness and response capabilities, including community based capabilities

NH State Child Care Emergency Plan

● Formalize DHHS and key community response and recovery from emergencies affecting
children, families, and Hilda care providers
● Multi-year process
2015 – Child friendly spaces Standard Operating Guidelines (SOG) for disaster shelters
2016 – State multi-agency reunification plan developed
2017 – NH Admin rule requires child care centers to have Emergency Operations Plan (EOP) and Continuity of Operations Plan (COOP)
Template includes ACEP and AAP (American College of Emergency Physicians & American Academy of Pediatrics) “Emergency
Information Form for Children with Special Needs & NH Emergency Checklist for Children & Staff with Disabilities and/or Access and
Functional Needs” distributed
2018 – “Preliminary Damage Assessment of Child Care Providers Post Emergency/Disaster” form developed for when a facility experiences
a disruption of operations due to an emergency

Crisis Standards of Care Plan Update

● Helps triage resources based on convention, contingency, and crisis operations
● Collaboration of stakeholders developed the plan
● Final submission is due June 30, 2022
● Dynamic document
Annual updates
Community engagement forums planned for late 2022
Tabletop exercise planned for April 2023

NEXT STEPS (Covid specific) Iain Watt, Deputy Director DHHS

● Moderate filed for FDA authorization for Covid-19 vaccine in kids 6 months to under 6 –
likely two dose series
● Pfizer-BioNTech hasn’t yet submitted data on their 3-dose series for younger children
● Covid-19 vaccines for under 5 may be available this summer
● Vaccines for younger age group (6 months to under 6) will be primarily through primary
care provider

CYCC and EPRR Collaboration Stephanie Locke

● Subject matter expertise
● Support community partner initiatives for emergency preparedness
● Participate in Cisis Standards of Care community engagement forms
● Revise emergency preparedness forms
● Promote preparedness and inclusion for disaster shelter operations for key population at
community level
● Encourage whole community conversations

Council Business:

Minutes from April 18 approved without amendment

Treasurer’s Report (Tim Guidish unable to attend, so Audrey Gerkin gave update)

● Tim and Audrey have gone through the budget line by line
JSI outstanding cost $62,000
First Tracks cost $21,000
Champion Awards total not yet determined
● $44,000 still available
● $17,000 left in special projects which can be rolled over
Comments on Treasurer’s Report
● Some talk about our plan to start a scholarship fund
● Thoughts about targeted funding of adaptive programs, funding accessibility of existing
camps rather than individuals
● Plan to discuss creative ways to make the biggest impact on the population we serve will
be discussed in more detail at the August meeting
Karen made a motion to accept the budget. Nicole seconded, and the budget was approved.


● No progress on member from Dept of Education
● Hoping to recruit Senator Becky Whitley to serve on the CYCC. Audrey will be sending personal invitation to our Champion Awards event
Change at Community Partners, our fiscal agent
● Brian Collins stepping down as Director, will be replaced by Chris Kodak

Celebration Event

● Subcommittee has met
● Invitation is up on Facebook – everyone encouraged to share
● Registration through EventBrite
● 50 attendees can register for planetarium show later in the evening
● Walkthrough next Friday (May 27)
● JSI will be able to attend, and will be displaying their PhotoVoice project
● We have the Galaxy Package, which allows for 600 people. Due to ongoing Covid
concerns the event is currently limited to 300 attendees. We have access to only 200
chairs, but that shouldn’t be an issue, due to the nature of the event
● Agenda for the evening has been set
4pm Access
5pm Event officially begins
6pm Dinner (pizza and salad)
Award recognition should be relatively quick as there will only be 5 given
Ice Cream Bar to follow
7pm Planetarium show (50 participants only)
8pm event should be wrapping up, we have the venue until 9
● Targeted invites will be sent to the Governor, CSNI, and other community parters

Further Thoughts on Event

● Deodonne and Karen have developed the nomination form
● Possibility of characters like Spider Man, Superman, Wonderwoman etc
● Might be helpful to add an image to the event page to get more attention and interest
● Additional invites to Friends in Action, previous winners of the award, Building in
Community, ABLE, New Futures, Partners in Health, family councils, Rare NH, Drs
McGonagall and Plotnik

Ongoing Projects

● Website redesign finishing in June
● New logo done by May 24
● Scholarship nomination form is currently a work in progress, not yet public.
● Kristen used some language from Partners in Health to develop the framework
● Jenn asked about rubrics for awarding scholarship, offered to share rubrics currently used by Community Crossroads
● Karen suggested making it more clear that scholarship will be awarded to those up through the age of 21
● Plan to distribute to special ed directors, school nurses once nomination form is finalized
● Rep Betty Gay mentioned sending it to school guidance counselors as well
● Audrey would like to announce the scholarship at our event, and set deadline for sometime in August
● We are beginning this process late this year, we may not be able to finalize scholarship for this year
● Needs assessment update – we are halfway to completion and will have a report to hand out at our event
● PhotoVoice project is moving along, with 8 families participating at last update
● We have a draft of the survey results Agency Report from Partners in Health, Heidi Petzold filling in for Dee Dunn Tierney Updates on the Redesign of Family Centered Services
● PIH (family support, care coordination) fills the gap not covered by the Area Agency system. Many families are involved with both programs, which leads to confusion
● Currently seeking to align the two programs care coordination services to national standards
● In late summer or early fall plan to extend the current internal stakeholders group to a larger community. Hoping for a group of 50 to 70 people in contact with a child with a special health care concern
● They have created a work plan by domain, and are looking at each piece of the standards
● Will begin process mapping the logistics of how services are provided sometime around June
● Will look at the different ways services can be provided
● Seek to streamline the overlap between BDS and family centered services Services should not change One health care coordinator instead of two BDS has the first right to bill for services
● Decisions have not yet been finalized
● Federal govt has not yet ended the public health emergency, expectation is it will go through the fall BDS, ESS, PIH are continuing to keep families informed so that when public health emergency eventually ends, families will not fall off healthcare cliff

BDS Waiver Redesign Proposed Letter

Families are extremely frustrated. They are finding it very difficult to connect and get details. The DDC, QC, ABLE, DRC have all been trying to make sure families are heard through this complex redesign process, which includes 2 new adult waivers and workforce rate setting.
Stephanie Patrick at the DRC is looking for organizations who would like to sign on to a letter expressing concerns about the process.
Would we like to sign on?
After some discussion and concern that the letter was focused too much on the developmental community, we decided to vote by email. This will give us the time to look at the letter ourselves. Youths aged 18 to 21 with chronic health conditions and a developmental disability
diagnosis do fall under our purview, which would be accounted for in the proposed letter.

Terry Olson-Martin, from NH Family Voices, had to leave the meeting early, but she later sent an
email expressing her reservations that an email vote will not allow for the discussion necessary
to make an educated decision. Therefore NH Family Voices will be abstaining from the vote.

The final email vote as of May 20 was 10 in favor, 1 against, and 2 abstaining. The CYCC will
sign the letter of concern.

State House

On Friday May 27, the Bipartisan Disability Caucus will be tabling outside the State House at
noon. CYCC will be represented. We are all invited to attend.

Meeting Adjourned


Prepared by Regan Lamphier