Council for Youths with Chronic Conditions
August 4, 2021
Zoom meeting 5:30-7:30pm
Attendance:
Deodonne Bhattari, Audrey Gerkin, Karen Livernois, Tim Guidish, Betty Gay, Josh Hilliard, Karin Mortimer, Jennifer Elliott, Laurie Fleming, Deirdre Dunn Tierney, Sylvia Pelletier, AnnMarie Van De Water.
Announcements:
- Pam will no longer be an administrator for the three councils. Audrey has applied, Karen can step in as Vice Chair until elections in January.
- Regan Lamphier is running for the Nashua School Board
- The Care Can’t Wait Campaign reached out to Audrey and asked her to be part of an interview with Senator Maggie Hassan. The focus of the interview was on Home and Community Based Services.
Discussed keeping an eye on the NH state budget as it pertains to issues affecting stakeholders.
Secretary Report:
It was requested that the following changes be made to the June 9th meeting minutes.
- Nancy Glynn is interested in a parent membership seat.
- Correct the spelling of Karin.
- Remove suggestion to review NHLA website.
- Correct the sentence regarding Leah, she did not work on the DRC’s website.
Minutes approved with above amendments.
Treasurer’s Report:
Tim reviewed the proposed budget for this year. We had an overage from FY2021. The parent stipend budget was increased for FY2022. Computer Consulting is a new line on the budget. Money spent on the Champion Awards will be billed to FY2022. Tim will follow up with Sue to get the final amount spent by Pam on the gift baskets. We now have $85,000.00 available for the needs assessment. Tim will confirm with Brian at Community Partners that funds from FY2021 can be spent in this next fiscal year.
Membership:
Audrey shared NHCYCC Membership Term limits. Heidi Petzel stepped down as the Community Based Agency Director. It was discussed that this position should be held by someone who runs a Partners in Health program or programs for children with special health care needs. Someone from Amoskeag or Waypoint for example. Dee will send Kristin and Audrey a list of possible names to fill this position.
Education and Senate positions have still not been appointed. Youth representative position is still open, Bayleigh, the student who nominated the 2 teachers from Exeter might be interested next year. It was mentioned that we should look for membership among parents/caregivers of children and youth with more diverse diagnosis. For example, cancer, diabetes, asthma.
Champion Awards:
- Manchester School District, Nicole Gutmann,
- Exeter High School, Coach Geoff Taylor and Dan Provost
- Monarch School of New England Kate Sisneroz
- Honorary, Laurie Fleming, School Nurse – Audrey announced to Laurie that we are presenting her with an Honorary award/basket.
Kristin and Audrey shared highlights of presenting the awards/gift baskets to the Champion Award recipients listed above.
Kristin will reach out to Nicole to see if the Union Leader Article has been published yet and to check if she received her corrected plaque.
Needs Assessment: (Sylvia Pelletier)
Proposal and budget received by JSI Research and Training Institute Inc./Community Health Institute
Discussed JSI proposal, Pros of the proposal were it including focus groups, surveying, incentivising families to participate, and use of Photovoice. Some concerns about the proposal were the proposed use of claims data, the amount budgeted for data analysis instead of focus groups, and the limit on the number of focus groups and target populations in the proposal. It was discussed that claims data is non-specific and it doesn’t tell the full story and it doesn’t account for the money that is spent out of pocket. Another concern was how to access families that receive care out of state? The Bureau has the internal capacity to handle the data analysis. It was suggested that we ask JSI to amend their proposal to allow for the flexibility in the more qualitative pieces of the proposal such as not limiting the number of focus groups and Photovoice and that we have the internal capacity for the data analysis. Kim Firth from the Endowment for Health can potentially help with funding once we have a proposal and a budget. Deadline for the RFP was August first so JSI is it for proposals. Audrey and Sylvia will reach out to JSI to request amended proposal(s).
Title V services update: (Deirdre Dunn-DHHS)
Dee’s team has begun to reach out to those that volunteered to be part of the stakeholder team. They will have Internal weekly planning meetings. Initial meeting is August 18th.
Nancy Rollins is the interim director at the Bureau to replace Deb Sheetz.
Website Update:
Audrey and Karen have access to the website and will be able to make updates now. Greenlight quoted $3500.00 to update the website. Audrey has been satisfied with working with them so far. Concerns were raised that Greenlight did not seem to understand the accessibility needs for the website. Other potential website companies are listed below. RFP still needs work before sending it out. It was discussed that we have to redo the website first before we can hire someone to fix it. Deodonne will forward email with a list of potential companies that would understand the accessibility features that we need. It was suggested that we “user test” it now to find the accessibility issues. Deodonne, Audrey, and Karen will work on the RFP.
Potential companies:
Loud Canvas
Greenlight
Windhill Design
Brandartica
Annual report:
Audrey would like the report done by December.
Deodonne will edit and Karen will help with the content.
COVID:
Discussion on supporting children under age 12 and their families. Families have reached out with their concern about the lack of mask mandates. Audrey is going to participate in the Child Care Institute call on 8/11 and will share families’ concerns on the call.
Audrey reached out to Dee for information on the call.
Betty advised that Jan Harper is the director of NH Homeland Security and that she asked her about a committee that someone from CYCC could become a part of regarding Disaster / Emergency Planning. Betty was told that she would look into such a committee but was not aware of one.
Deodonne advised that NH IOD is doing focus groups on vaccines and barriers to access.
Discussion on adding a “COVID Box” on our website for information for our families as well as a way to have families contact us with their concerns.
Action Items:
Kristin will make requested changes to the minutes.
Kristin will reach out to Nicole to see if the Union Leader Article has been published yet and to check if she received her corrected plaque.
Tim will confirm with Brian at Community Partners that funds from FY2021 can be spent in this next fiscal year.
Dee will send Kristin and Audrey a list of possible names to fill the Community Based Agency Director position.
Audrey and Sylvia will reach out to JSI to request an amended proposal(s).
Deodonne will forward email with a list of potential companies that would understand the accessibility features that we need.
Deodonne, Audrey, and Karen will work on the RFP.
Upcoming CYCC meetings:
October 6 2021 5:30-7:30pm
December 1 2021 5:30-7:30pm (Annual Report Due)
Jan TBA- Annual Meeting