Council for Youths with Chronic Conditions
March 16, 2022
Zoom meeting 5:30-7:30pm
Attendance:
Audrey Gerkin, Tim Guidish, Sylvia Pelletier, Dee Dunn Tierney, Karin Mortimer,
Leah Stagnone, Laurie Fleming, Joshua Hilliard, Nicole Parker, Kristin Bonny.
Secretary Report: (Kristin Bonny)
Suggested edits to the January Meeting Minutes were shared
with the council and discussed. Kristin made a motion to accept the minutes with the requested
changes, seconded by Nicole. Minutes approved with changes.
Treasurer’s Report: (Tim Guidish)
The budget was shared with the council. Clarification was
made regarding when the 2021 Champion Children’s funds were awarded. Funds may need to
be taken from special projects for this year’s Champion Award Ceremony due to both occurring
in the same fiscal year. A couple of parent stipend forms still need to be returned to Audrey.
Tim requested a cost breakdown from First Tracks. Audrey will ask Matt for one.
Attending the Wright’s Law conference was discussed. CYCC will not attend at this time.
Kristin made a motion to approve the budget, Leah seconded. The budget was approved.
Membership:
Karen and Audrey met with Senator Sherman in hopes that he would be the
Senate representative on our council. He shared that he is running for Governor and therefore
cannot. He suggested Senator Whitley sit on our council. She has a lot of experience and
relationships with children’s organizations. She also has experience with Federal grants which
would be beneficial for future fundraising by our council.
Senator Sherman will reach out to Senator Whitley to see if she would be interested. Deodonne
shared at our Executive Council meeting that she knows Senator Whitley and will reach out to
her as well.
Karen has received 2 requests from parents for membership. She has sent them both
applications and is waiting for their submissions. She will follow up with them.
Audrey is still working on finding a representative from the Department of Education. It was
suggested that we look for a teacher who has a child with a chronic health condition to fill that
role.
Good news updates:
Karen and Leah gave a presentation about the CYCC at the NH Leadership
Series. Leah shared that it went well and they received good feedback. One suggestion that
came up as a result of the presentation was adding a timeline to our website. One was added.
She shared the powerpoint slide show that they used, with the council.
The Upper Valley Educators Institute reached out to Audrey to request pictures of Geoff Taylor,
one of the Champion teachers that we honored last year. He was a graduate of their program
and they wanted to highlight him in their Annual Report. Audrey shared the pictures with them
as well as a copy of our annual report. They will send us a copy of their annual report.
Agency Reports: (Dee Dunn Tierney)
notes provided by Dee.
a. DHHS/Title V
i. RFP released for Specialty Services for CSHCN(statewide) and Health Care Coordination (Hillsborough, Rockingham &
Strafford Counties). Due March 25. Multiple Vendors attended the Vendor Conference for HCC!
ii. Recruitment challenges – Med Services Eligibility Technician posted (one known applicant thus far). Anticipating
two Program Assistant II positions and a Nurse Specialist to be posted within the next 2-3 weeks. Hope to fill all by July1.
iii. Rules review He-M 520 and He-M 523 beginning now
iv. Redesign work moving ahead with the following decisions:
1. Planning for 10 regional contracts to provide enhanced version of community-based health care coordination with family
support beginning July 1, 2023.
2. This will replace current health care coordination and PIH programs and allow for increased cohesiveness of services, ease
of navigation for families, and stable/consistent staffing for all BFCS services.
3. Stakeholder group to meet next week for quick updates.
4. Large stakeholder meeting in June/July with break-out groups to focus on the following areas:
a. Naming the new program
b. Reviewing tools (e.g. assessment, care plans)
c. Role of Councils at regional and state levels
5. Title V Block Grant due August 15th. May request input at various points throughout the writing process. Currently
preparing section on Needs Assessment activities.
6. DHHS website redesign to be launched May 1st.
Some things discussed were:
● Would we share our powerpoint presentation with Dee so they can use our wording
around a link for our council on their website?
● How are families/stakeholders feeling about the redesign? The large stakeholder
meeting in June/July will hopefully provide that feedback.
● A Communication Plan will be developed and our feedback will be helpful.
● 50% of children in foster care have chronic health conditions and how can our council
assist with this. It was suggested that Deanna from NH Family Voices and a foster
parent, come speak at one of our meetings.
● Dee will reach out to DCYF to see how to distribute the Needs Assessment Survey to
foster care families. Audrey will reach out to JSI regarding how to reach foster care
families.
● There are 28,000 kids whose families have not completed their Medicaid
redetermination yet. How can we help get the word out to those families? It was
suggested that we could put together PSAs. We will be able to put information out on
our website when it is finished.
Champion Children’s Awards:
Needs Assessment, Web unveiling, Scholarships for self
advocates for an essay.
Audrey suggested awarding scholarships to youth advocates who are transitioning to college or
other post-school activities. Submissions would be in the form of an essay. Awards would be
for $500.00.
Location for the event: The Christa McAuliffe Museum still has the 600.00 deposit. Cost to rent
the Museum is,
● 1600.00 for the whole museum and observatory. 1200.00 for just the museum and
exhibits.
● We can bring our own food or pick a caterer off their list.
There are plenty of openings in May and we would be able to rent out the museum anytime of
day. In June the museum officially opens to the public so the event would have to take place
during the evening. The date is going to be centered on when JSI can pull together the halfway
point and the photo voices project, probably in June.
A planning committee was formed. Kristin, Tim, Leah, and Karin volunteered. Audrey will email
members that were not present to see if they are interested in the planning committee.
Items for the planning committee to determine soon will be.
● Definition of award eligibility: The award should be for a youth that has taken on a
leadership role or community initiative while living with a chronic condition.
● Generate a flier to send out after we have decided on guidelines.
● Limit to the number of awards, 5 was suggested.
● Diagnosis specific organizations and school nurses are the best way to get nominations.
● The subcommittee will keep the council informed during the process and ask for council
approvals when necessary via email.
Email Audrey with any suggestions.
Needs Assessment Update:
The Survey went live on Friday. Next step is the Photo Voices Project. Members of the council who have or are caregivers of a youth with a chronic medical condition are allowed to fill out the survey as well. JSI is hoping to blow up some pictures from the Photo Voices project for our June event. The Needs Assessment Committee meets with JSI once per month for updates.
Website Redesign Update:
Items discussed at the most recent web redesign subcommittee
meeting were.
● Annual reports and how and where to display them on the webpage.
● The About Us page, what should be displayed and where.
● Karen’s son will design the new logo for the council. The color scheme of the website is
the color of our current logo. It will be easy to change the colors when we have our new
logo.
● The Resource Page needs to be cleaned up and pared down. Links should be added
when possible. It should focus on NH resources.
Adjourning:
Audrey is still communicating with the Department of Public Health about
attending one of our council meetings. Audrey will be away in DC for NH Lend the last week in
March for the disability conference.
Meeting dates for 2022:
Third Wednesday of the months in 2022
-May 18
-August 17
-November 16
Prepared by Kristin Bonny