Council for Youths with Chronic Conditions
March 24, 2021
Zoom meeting 5:30-7:30pm
Audrey Gerkin, Karen Livernois, Tim Guidish, Pam Becker, Deodonne Bhattarai, Deirdre Tierney, Sylvia Pelletier, Regan Lamphier, Josh Hillard, Betty Gay, Regan Lamphier, Kristin Bonny, Laurie Fleming
Rick Minard from Building Community in New Hampshire, Amanda DeGiovanni from Friends in Action
Welcome new members:
Welcome to Josh Hillard, Department of Insurance, Enforcement attorney for the Dept of Insurance. Josh introduced himself. Sylvia gave Josh an idea of what his role would be as the representative of the NH Department of Insurance.
Welcome to Rep Hon. Betty Gay who is replacing Latha as the appointed Representative. Representative Gay introduced herself. She will ask the Speaker of the NH House if Latha would still be able to participate as an additional Representative from the NH House.
The amended minutes of the February 3, 2021 meeting were approved.
Tim reviewed the new budget proposal with the council.
Discussion began on how best to use money currently identified as special projects in addition to conducting a needs assessment. It was suggested that we should determine our strategic initiatives. We could increase the amount we spend on the Champion Awards.
It was clarified for new members why there are left over funds in the budget. Due to Covid protocols, there has been no Champion Awards Ceremony in the last two years, there is no travel for Pam, and there have been fewer meetings.
RFP Recipients Introduction:
Rick Minard from Building Community in New Hampshire (BCNH) presented first. He gave a brief history of the organization and how it started as the Buttanese Community of New Hampshire. He shared that the NH Secretary of Education approached BCNH to see if they could help reach refugee students and their families who were struggling with virtual learning. BCNH will use the RFP award to help NH refugee families with youth who have chronic conditions to connect with the resources that are available to them. Rick asked that we reach out to him when we are ready to begin our needs assessment.
Amanda DeGiovanni from Friends in Action presented next. Amanda shared how Friends in Action typically runs and how because of Covid they have been unable to meet in person. She shared how they have used the RFP award to travel the world via Zoom. They have visited 6 different countries. Their attendance for each trip was between 25-30 people and about 75% of Friends in Action participants were able to attend.
Pam heard back from the governor’s office. They confirmed that Karen’s appointment is on the Governor’s agenda and should be approved shortly. Josh Hillard is the appointee from the Department of Insurance.
Pam has still not heard back from the Governor’s office about a representative from the Department of Education or from the Senate. Nancy Glynn is interested in joining the council as a new member. She met Audrey and Pam at the recent NH Leadership session when Audrey spoke. It was suggested that a representative from Partners in Health be asked to be on the CYCC board.
NH LEND Advisory Committee:
Discussion was raised as to whether CYCC should have a representative on the NH LEND Advisory Committee. The committee meets annually to advise the leadership of the NH-ME LEND Program. It was pointed out that the LEND program is directed toward the Developmental Disability community and that it might be better for CYCC to have a presence with the NH Leadership Series. Audrey will reach out to Deb to see if the NH Leadership Series has any type of Advisory Committee.
The Bylaws were approved. There was no further discussion.
CYCC’s public statement about vaccine eligibility Update:
Discussion began with the attempts Audrey has made to find out why CYCC’s public statement clarifying vaccine eligibility has not been approved. Dr. Ballard, Deb Sheetz and DHHS have not responded to Audrey’s requests and Preston from the Governor’s office has said that we should ask Dr. Ballard for more clarification as to why the statement has not been approved.
We discussed possible reasons why the statement was never approved. We also discussed resubmitting the statement without referencing the governor’s office and using the language as is on the Technical Assistance guide without interpreting what an unpaid healthcare worker is. It was determined that Dr. Ballard’s clarification of who was considered an unpaid healthcare worker was necessary. Without that interpretation caregivers and paraeducators who perform medical tasks outside of a medical facility would not know that they were eligible under Phase 1B. We decided that if we put out another statement with that interpretation it would hurt our long term standing with the Governor’s office because we did submit a statement and it wasn’t approved. No further action was discussed.
Needs Assessment (Sylvia):
Sylvia and Terry met with Kim Firth from Endowment for Health. Kim was not sure that a needs assessment has ever been done with our population, she will look into it. Sylvia also met with Holly Tutko from NH Pediatric Improvement Partnership. The suggestion was made that due to the cost of doing a needs assessment correctly we should look to blend funding with other stakeholder organizations. Sylvia will meet with Holly next week and Kim in 2 weeks to discuss next steps and putting together an RFP for other organizations who may want to help with funding the needs assessment. Some possible organizations mentioned were the School Nurses Association, NE Genetics Association, and organizations that support specific chronic conditions. It was pointed out that the CDC and the National Association of School Nurses did a needs assessment for students with chronic conditions a few years ago and that we should look into what they did.
Discussion continued with how we will disclose the results of the needs assessment. It was suggested that we host a big event to share out what we learned and to showcase who the CYCC is and the work that we are doing.
Champion Awards for school nurses and teachers:
Kristin will reach out to Laurie to begin work on the Champion Awards for 2021. The goal is to have a plan in place by the June meeting.
Family Council Administrator interviews (Deirdre Dunn):
Deirdre would like 1 or 2 members from the council to sit on the second interview committee for 3 remaining candidates. Email Deirdre Dunn ASAP if interested. She is hoping to interview next week. Pam will reach out to Ann Marie to see if she would be interested.
Nursing Shortage update:
Audrey was invited to speak about CYCC at the NH Leadership Health Inequity presentation.
We have openings for up to 5 more parents/caregivers and 1 youth representative on the council. It was determined that we should consider how the youth representative will participate, for example, just the beginning of the meeting. It was suggested that we contact the YEAH council to find a youth representative. Pam sent out our information to several other organizations that may be interested in our missions and possible partnership. The NH Epilepsy Foundation was suggested. It was pointed out that they have lots of Americorps volunteers and that it may be beneficial for them to learn about CYCC. The CF Foundation, Spina Bifida Association of NE and Zebra Crossings were also suggested. Pam will send letters to the Executive Council.
Thank you to Tim and Regan who both presented at the NH RARE Disease Day Virtual Event on February 24, 2021. They shared about their experience and how they were glad to get out the word about the importance of advocacy.
Pam brought up the need for a new website to the council. She stated how the current one is not user friendly, and outdated. She mentioned that some web hosting sites are just for nonprofits. She suggested Wix web hosting which is $5.00 per month. We currently pay 50 dollars per year. DRC recently created a new website and the DD council is doing this right now. It was suggested that Pam reach out to Vanessa Glaze and that accessibility features need to be prioritized. Pam will do some more research and put some suggestions together to send to the Executive Council.
We ended the meeting by introducing ourselves to the new members and setting up future meeting dates.
Upcoming meetings and future scheduling:
May 5, 2020 from 5:30–7:30pm
June 9, 2021 from 530-7:30pm
August 4, 2021 from 5:30-7:30pm
Kristin Bonny, Secretary