Council for Youths with Chronic Conditions

June 9, 2021
Zoom meeting 5:30-7:30pm

AGENDA

1. Attendance:

Pamela Becker, Kristin Bonny, Karen Livernois, Audrey Gerkin, Leah
Stagnone, Karen Mortimer, Sylvia Pelletier, Deirdre Dunn Tierney, Tim Guidish, Deodonne
Bhattarai, Betty Gay, Regan Lamphier, Josh Hilliard

Welcome introductions for potential new members Leah Stagnone and Karin Mortimer.

2. Secretary Report

– Fix spelling of Shuba. Minutes approved, one abstained.

3. Treasurer’s Report

– Budget is as close as can be due to growing council and Covid
irregularities. Each department should have enough to cover their needs. We also have money
in the project balance if needed. Transportation budget was lowered due to lack of travel.
Reinstituted stipend for executive council meetings, voted on and approved. It was pointed out
that historically the executive committee stipend is just for the one extra meeting, not for all ad
hoc meetings. Parent stipend budget increased to cover additional members and executive
council’s extra meetings. We need to change the wording of parent stipend to how it is written in
the bylaws to cover youth members/family members.
Budget is approved.

4. Membership

Membership terms were updated and emailed to everyone.
Pam reached out to Nancy Glynn and received an email that she is still interested in filling
the Senate appointee seat. Pam will follow up with her. Pam submitted final membership letter
to the executive council for approval. She will print and mail letters to organizations that would
have an interest in the CYCC next week. Due to lack of response from the DOE there has been
no further attempt to contact them about filling their position on the council.

5. CYCC website update.

We need to find more web designers to submit a quote to update our website. Anyone that
knows of a web designer that could meet our accessibility requirements should let Pam know so
that she can reach out to them. It was pointed out that the DD council had to use a state
assigned web designer when they updated their website. Do we need to do the same? Dee
says no we don’t. It was suggested that we write an RFP with a focus on the necessity of
accessibility being a priority when designing our website. Deodonne shared RFP’s from both
the DRC and the DD councils when they were looking for Web designers, for us to use as a
guide. Both had accessibility as a priority. We need parents to be on that subcommittee for the
RFP. It was pointed out that we should have an end date for the RFP. Tim volunteered to be on
the subcommittee. Reach out to Leah to see if she would as well as she worked on the RFP
for DRC. NHLA has a great website we could check with them to see who they use. Goal of two
weeks for the RFP to be written.

6. Champion Awards for school nurses and teachers

Updated new potential members about the Champion Awards. No nominations have been
submitted yet. Tim will forward email of someone he knows who wants to nominate a teacher.
Increased the deadline for video submissions from June 11th to the 18th. Date will be updated
on our website and facebook.

7. Needs Assessment Update (Sylvia Pelletier – NHFV)

RFP was drafted and sent to Deodonne, Tim, and Audrey for edits. The RFP will request that
an Advisory committee be formed to include CYCC members Deodonne and Tim, Shuba from
the Bureau, family members, and members from diagnosis specific organizations. The question
was asked, how many total should be on the advisory committee. It was agreed that the
advisory committee should not exceed 12 members total. A 4 week response time was agreed
to. A timeline of a year for the contract award was discussed and agreed upon, with
consideration for the Bureau and their Needs Assessment. The Bureau may delay their survey
by a year to have our results help design their Needs Assessment. It was discussed that Youth
focus groups need to be included in the Needs Assessment but it won’t be specified in the RFP.
Respondents that include this in their proposal will be considered more readily. Documents from
Community Partners will be needed when proposals come in and we know what the costs may
be so that Kim can submit for funds from The Endowment for Health. Responses will be sent to
Sylvia. Sylvia gave Karen a synopsis of what The Needs Assessment is and what it is for.
Sylvia will send RFP to Dee and follow up with Kim. She is hoping to get it out by July 1.

8. Title V services update (Deirdre Dunn-DHHS)

DHHS is pulling together a stakeholder group to look at Title V work in terms of what they have
been doing and what they will be doing. They are looking for people who are served by any of
their Title V services to be a part of the stakeholder group. They will be looking at all of the
services that they are providing and for overlaps to see if there is a better way to do their work
going forward. DHHS will be looking at a set of National Standards for care coordination. They
will be starting with 6 series of meetings with this stakeholder group. Some of the questions
they will be asking are;
● What are the problems around services for kids with special health care needs?
● What do the National Standards tell us about quality of services for care coordination?

DHHS would like at least a couple CYCC members to be a part of this stakeholder group.
Anyone interested should send an email to Dee. Karin and Karen both expressed interested.
Audrey will put Dee on the Agenda for August for updates.

9. Private Duty Nursing Educational website page with NHFV

During listening sessions for the GSIL parent payment program it was discovered that families
who participated had very little knowledge about how the system works and how you receive
nursing services. Nursing Agencies do not fully understand the system either. Audrey and
Sylvia are looking to create a website that has all of this info in one place. It was suggested that
an Ad Hoc committee be created once the Needs assessment RFP is out, to work on creating a
website page with all of the information pertaining to how the nursing system works in NH and
how to access nursing services.
Some questions that could be answered on the website are (What’s the process, what are the
questions to ask, getting used to having someone in your home).
This would be for providers and families to use.

10. Emergency Preparedness

Discussion began about the inequities in emergency preparedness when it comes to persons
with disabilities. There is a group at the state level that meets to discuss/plan emergency
preparedness. How do we get a member of our council a seat in this group? Several members
looked to find information on NH.gov regarding this group and were unable to. Audrey
mentioned that there was only one National Organization that focuses on Emergency
Preparedness for people with disabilities and that we should reach out to them. IOD did a
report on this topic several years ago and it might be a good idea to reach out to them for
information and ask them to update that report. It was asked, what is the Governor’s
Commission on Disabilities doing regarding Emergency Preparedness? Audrey will reach out to
Jen Bertrand to get clarification as to where on the NH.gov website we could find information on
the state level group on emergency preparedness. Sylvia stated that years ago there was a
committee in Dartmouth that focused on this. She will look to see where that committee is now.
Closing: Karen and Leah not present. Motion was made and seconded to add Karen and Leah
onto the council. All were in favor.

Action Items:

● Pam will follow up with Nancy Glynn regarding membership.
● Pam will mail approved letters to stakeholder organizations.
● Form subcommittee to write an RFP for our new Website. Tim will be on the committee.
Reach out to Leah to ask her to be on it.
● RFP for Needs Assessment to go out around July 1st.
● Emergency Preparedness: Audrey will check with Jen and Dee regarding where
emergency preparedness committee is.. Sylvia will look to see where emergency
preparedness committee is now.
● Reach out to the national organization “Germaine”

Upcoming meetings
August 4 2021 5:30-7:30pm
October 6 2021 5:30-7:30pm
December 1 2021 5:30-7:30pm (Annual Report Due)
Jan TBA- Annual Meeting