Meeting Minutes

Time: 5:30 - 7:30 pm

Date: August 17, 2022

Location: Zoom

Council for Youths with Chronic Conditions

August 17, 2022
Zoom meeting 5:30-7:30pm

Meeting Minutes



Audrey Gerkin, Karen Livernois, Sylvia Pelletier, Deodonne Bhattari, State Senator Rebecca Whitley, Diedre Dunn Tierney, Karen Mortimer, Joshua Hillard, Leah Stagnone, State Representative Betty Gay.


  • Introductions

      1. New member Senator Becky Whitley, District 15
      2. First Meeting
  • Secretary Report / Meeting Minutes

      1. To be voted on in special meeting
  • Treasurer’s Report / Budget 

      1. Final payment to JSI due
      2. First Tracks website payment due
        1. $33,000 in budget for special projects (Approval was granted to roll over funds)
      3. Donations accepted on Website now
      4. Will Vote on Budget next special meeting
  • Membership

      1. New member application –for youth member role
        1. Discussion on position available
        2. Will be researched by and brought back to Council 
      2. Current Member list shared
        1. Dept. of Education still unfilled
        2. Community base Agency
          1. Discussion on accurate title of position
          2. History of Community Based Agency discussed
          3. Potential candidates discussed
  • Celebration Recap 

      1. Event described
      2. Photo Voice Project
  • Needs Assessment Update

      1. Discussion on focus groups
        1. Update on who had participated
        2. Bringing to Childhood Cancer Lifeline and Epilepsy Foundation events
        3. Other possible providers discussed
      2. JSI will be available to help with other presentations / Exhibits and is creating a video to share in the future
  • Website Redesign Update  

      1. Working well a few more items to be finalized 
      2. Issues with Greenlight still being addressed to cut ties
  • Events  

    • Bi-Partisan Disability Caucus
        1. Able to engage with a large number of people
    • Highlight Completed Needs Assessment
        1. Hoping for 1 event per month from October through the Spring
          1. For both photo voice and needs assessment
          2. Pick one event for JSI to provide live presentation
        2. Proclamation of Chronic Conditions Awareness
          1. Discussion on which month not to interfere with other awareness platforms
          2. 2023 is 30th Anniversary of CYCC would be a good time to promote Council
          3. May suggested– Mother’s Day, good way to promote parents standing up for their children
    • Gubernatorial Town Hall
        1. Potential date Sept 20th & Sept 27th
        2. Able to submit questions
          1. Suggested that children under 21 submit questions
        3. Wil be by hybrid w/ 50 people in attendance
          1. ASL and captioned for accessibility
          2. Ticket availability discussed
        4. Candidates will not appear together
          1. Each will have one hour
          2. Questions will be to each candidate
        5. Reminder given that we don’t want to get lost in “disability” 
          1. Make sure we talk about children with chronic conditions and not disabilities
      1. Set up Subcommittee for public events
        1. Will be working on that 
  • Agency Report 

      1. Agency serves children with Special Health care needs
        1. Some have disabilities, some do not
      2. Reported on antiquated system 
        1. Wrote a capital improvement request that was not approved by department
        2. Much discussion on how to assist BFCS with funding for new system 
        3. Many ideas presented by members.
      3. Update on Health Care coordination and Family Support
        1. Should be ready in January
        2. Update on # of agencies looking for to administer
  • Public Health Crisis Standards of Care Plan Feedback

      1. Is public input possible?
      2. CYCC attendance at meetings
        1. Has been done in the past
        2. Will continue to work on connecting to have a seat at the table. 
  • Seacoast Human Resources Association

      1. Applied for “Partner Association”
        1. Approved for Mar – May 2023
        2. Met with them at Haven Event
        3. $250 donation to CYCC
        4. Will need representation at their spring quarterly meeting 
  • Policy Updates

      1. Attached to agenda and will be available on new website 
      2. ACE Pilot program
        1. Update on program
      3. Rare Advisory Council meetings
        1. Issues with medically based nutrition being capped by Medicaid
        2. Meeting this upcoming Friday
  • Future Projects Subcommittee:

      1. Executive Council will meet to discuss and bring forward to Council
      2. Will have another meeting to vote on this
  • Meeting Dates 

    1. Next meeting November 16th via Zoom
      1. Annual Report Draft should be ready
      2. Discussion of 2023 schedule

Meeting End 7:25

Prepared by Karen Livernois