Meeting Minutes

Time: 5:30 - 7:00 pm

Date: November 20, 2024

Location: Zoom

Council for Youths with Chronic Conditions 

Meeting Minutes

November 20, 2024

Zoom meeting 5:30-7:00 pm

Attendance: Leah Stagnone, Karen Livernois, Karin Mortimer, Dee Dunn, Betty Gay, Jennifer Smith, Thaia Dorow, Ansley Peacock, Jennifer Burbank

 

Not present:  Tim Guidish and Kristin Bonny from the Executive Board.  Emily Lajoie from the School Nurses Association, and our two proposed new members Elizabeth Greeno and youth member Bayleigh.

 

It was noted that we didn’t have a quorum and therefore would not be able to vote as a council

tonight.  

  • Welcome and introductions


  • Secretary’s Report (Karin Mortimer)
    • Minutes for both May and September meetings were distributed but we did not have a quorum to vote them into the record.   They will be voted on at a later date.

  • New Member Update (Karen Livernois)
    • Excited for Emily Lajoie from the School Nurse Association and our two proposed new members, Elizabeth Greeno and youth member Bayleigh Clock


  • Chair Update (Karen Livernois)
      • Annual Meeting date will be determined shortly.  Looking for mutually agreeable time for everyone
      • Also considering alternate dates for future meetings as some members have conflicts with our current schedule.  Leah will be sending out polls to determine what works best for everyone.

  • Fiscal Sponsorship Update (Karen Livernois and Dee Dunn)
    • Dee and the department have been extremely helpful and supported.  Dee expressed that the dept. is committed to provide support.
    • Dee suggested that the NHCYCC be separated from the other councils because the population we serve is not the same.
    • In the process of creating contract request
    • More information in December and early January when RFP is submitted.
    • The agencies will apply, be reviewed, issued a contract, accept the terms, and go to the Executive Council for approval.
    • Agency awarded the contract will not be announced until June
    • Karen thanked Dee for all the support she has provided to ensure this is a smooth transition.

  • Finance Report 
    • Karen provided a brief update in Tim’s absence.  
    • Reviewed the finance report
    • We are under budget and have money to spend down before end of fiscal year and new agent.
    • July 1 – new agent.  Funds needs to be spent down prior to July 1.
    • Council is considering holding our annual event in June so that expenses are incurred before the end of the fiscal year.
    • The council will investigate supporting programs the council has historically supported but have not supported in the recent years.  Look into why we stopped supporting and if it’s something we should start again.
    • Karen thanked Leah for doing so much community outreach and connecting us with so many new agencies.

  • Council Director Update (Leah Stagnone)
    • Update on the Learning Journey weekend.  Leah thanked all that participated in a great weekend collaborating with the bureau, NHFV, and families.
      • The groups worked with families to identify things that work and areas for improvements within the system.
      • Core issues such as mentorship, onboarding staff members, honoring staff with lived experience, the fragmentation of the system, care coordination, and developing a palliative care philosophy when dealing with children with chronic medical needs
      • Dee agreed it was a phenomenal weekend with great participation from the different divisions including Medicaid.
      • Discussed the Home Health model and home health care coordination
    • Discussed working with local schools with job shadow or hands on programs to educate students on areas of work as a DSP.
      • Some schools have DSP programs
      • Huge opportunity to partner with community schools and promote careers in this field
    • Leah attended the Rare New England Conference on Oct 18.  Kristin Bonny also attended.
      • Very good conference with great information
      • Made connections with others but many from other states
      • Attendees from other states left curious of their state had something similar to the NHCYCC and were very impressed by our work.
    • Legislative update
      • Made connection with Epilepsy Foundation and will be monitoring new LSR for seizure safe schools.
      • Leah is following the LSRs as they are submitted and highlighting any of interest to our group.
      • Right now you can only see the title and not language (coming in January)
    • Leah is working on the Annual Report and will focus much of the upcoming few weeks working on it.   She will send a draft to the EC and anyone else who would like to preview it.
    • Leah continues to work on digitizing NHCYCC historical documents by scanning and categorizing them.

  • Celebrating our Council members (Leah Stagnone)
    • Congratulations to council member Michelle Caswell and her wife on the adoption of their 6th child.   Karen shared that she attended the very moving ceremony that honored this amazing family.

  • Agency Report (Dee Dunn)
      • Needs Assessment update
        • Dee presented a slide deck explaining the Title V Block grant and how it supports the individual states.   There is a formula that determines how funds are allocated to the states.  The formula is based on the % of families living below poverty level.
        • Dee explained how each state plans how they use their own money based on surveys, focus groups, looking at data and the capacity to make change. 
        • Funds support programs of family-based community systems of care for children with chronic health conditions.
      • Two surveys – one broad Title V survey and a more detailed and specific survey about the needs of the community in NH.
        • Title V ‘big’ survey open until January 15th
        • NHFV needs assessment will close in mid-December
        • If you haven’t already participated in the surveys, please do so!  Feedback is so important!
  • General Discussion 
  • The group had a great discussion about the YEAH Council – a council led by and for youths with chronic health conditions or disabilities.  Ansley shared that there is a virtual open house on December 10th.  Information can be found on the PIC website at www.picnh.org under workshop and events.  
      • We welcomed Jennifer Smith and she provided an introduction and overview of her role as Legislative Director at New Hampshire Insurance Department
  • The group discussed how confusing the system can be for new families and we were reminded that https://nhfv.org has a excellent website ‘map’ to help point families in the right direction.  The info can be found under ‘How We Can Help’.

 

*Upcoming 2024 Council Meeting Dates:

Polls will be sent out for Annual Meeting date as well as upcoming NHCYCC General Meeting dates.

Have a wonderful holiday season everyone!

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