Meeting Minutes

Time: 5:30 - 7:30 pm

Date: January 17, 2024

Location: Zoom

Council for Youths with Chronic Conditions 

January 17, 2024

Zoom meeting 5:30-7:30pm 


Leah Stagnone, Karen Livernois, Jen Burbank, Dee Dunn, Deodonne Bhattarai, Ansley Peacock, Josh Hilliard, Betty Gay, Lauren Sirignano, Tim Guidish


Introductions were given for our newest member.


Exciting news 

Fully Accessible Playground at White Park gets Funding!  See Concord Monitor article featuring Deodonne and Bodhi.  Visit Friends of White Park to see the draft design.  They are looking for input from families regarding the design.  Email Deodonne if you have input.


New Council Director (Leah Stagnone)

Leah shared about her participation in the National MCH Workforce Development Center’s 2024 Learning Journey.  Her workgroup has been meeting regularly mapping out Title V issues.  They will travel to CA for a training at the end of February.


Secretary’s Report (Kristin Bonny)

The minutes for November 15, 2023, were sent to the Council for review prior to tonight’s meeting.  There were no changes requested. We did not have a Quorum so voting was postponed. 


Treasurer’s Report (Tim Guidish)  

The budget report does not show what has been paid to date.  Karen will reach out to Tim and Leah to discuss the budget.  Karen will send another request to Community Partners for an updated budget.  Karen will reach out to the Community Partners Director if she does not get a response.  

  • NH Leadership Sponsorship 2024- 2 Council members attending this year.  It is unclear if the tuition has been paid.
  • Upcoming Legislative Luncheon.  They are looking to increase contributions because they ran out of food last year.  No specific contribution amount has been given. The Luncheon will be 3/21/24 from 11-2.  Discussion continued about what line item this should be under in the budget.  Karen, Tim, and Leah will discuss this when they meet next.

We did not have a Quorum so voting was postponed. 


Membership (Karen Livernois) 

The NH School Nurses Association liaison to the Council has left. Karen has someone in mind and will bring it to the Council when she knows more.


Open positions that need to be filled:

  • DOE liaison.
  • Community Organization- Karen will talk with Dee about a potential candidate.
  • Other Stakeholders
    • Epilepsy foundation- Karen reached out and is waiting to hear back.


Thank you to Deodonne.  This is her 6th year. Karen is looking for a way to keep Deodonne on in another capacity.    


Agency Report (Dee Dunn) 

Activities at the Department have been largely focused on the following:

  1. Medicaid  

BFCS submitting Project Proposal to the Department’s Project Management Office (PMO) to explore Health Homes option for NH.

  1. Updates on BFCS services for CSHCN –  
    1. Nurse Consultants are reaching out to families that are in vacant areas to address urgent needs and provide resources. 
    2. Updates in areas without HCC contracts 
      1. Negotiating services with agencies in Regions 6 and 7 for care coordination for FY 25 & 26.
      2. Looking at ways to support family council work in regions 5 and 10.  
      3. Outreach to families with questions about needs in vacant communities – in addition to Nurse Consultants outreach.
    3. Two-year amendments (FY 25 & 26) in process for
      1. Complex Care Network.
      2. Child Development 
    4. FEMA Updated Training Course on Including People with Disabilities in Disaster Operations for DLTSS staff


  1. Staffing – vacancies and hires
    1. BFCS Program Assistant – Heather Woods, started Dec. 1
    2. Clinical Program Manager – changed name to “Nurse Manager for Programs for CSHCN”.  
      1. 3 applicants since Jan 4
      2. Interviews underway
    3. BDS Bureau Chief – Jessica Gorton


  1. DHHS Collaboration Group reconvened.
    1. Representation from across the Department
    2. Seeking opportunities to better coordinate service delivery


Questions and discussion from the Council.  Were the results from the Emergency Exercise Simulation shared with DHHS?  Deodonne and Audrey both participated in it. Deodonne shared that questions that came up during the exercise were not resolved.  Was there any follow up?  Dee will look into this.


Need to keep emergency preparedness in the conversation in the upcoming Needs Assessment.


Annual Report (Leah Stagnone)

The Annual Report was sent to the membership prior to tonight’s meeting. Leah highlighted parts of the Annual Report including Anticipated Activities for 2024.


Discussion around highlighting family experiences and the needs families with a child with a chronic condition have.  Including conditions like Asthma and Diabetes that might not be as visible.

  • How to do this? In a monthly newsletter or a video on our website.
  • If there are any chronic conditions not on the list in the Annual Report that we think should be included let Karen and Leah know. 


Annual Meeting Business (Karen)


  • Review of By-laws No changes were requested, If you have any changes to the By-laws let Karen or Leah know.  


  • Committees to set-up Leah reviewed Committees that need to be formed.
    • Nomination Committee- job to nominate new members- parents, stakeholders, etc.
    • Annual Event Planning
    • Champion Award
    • Policy 
    • Others – Review next year’s goals 

Leah will send out an email to ask who would like to do what.


  • Voting for open officer positions The slate of officers that are being presented by the executive committee are:
    • Vice Chair – Kristin Bonny
    • Secretary – Karin Mortimer


  • Discussion about how our Quorum is written and how to best proceed with elections.  We are not allowed to have email votes.  It was determined that we could schedule a meeting to vote only.  Leah will do a poll of the membership to find a time to meet to vote for officers, last months meeting minutes, budget, and Bylaws.


Policy Focus (Leah Stagnone)

Karen and Leah reviewed all pending bills and picked out any bill that was even remotely relevant to our stakeholders.  Leah shared that list with the Council along with upcoming opportunities to testify.


Karen and Leah discussed pulling together resources for what to expect when you testify.  


YEAH Council

Ansley shared about the YEAH Council, YEAH stands for Youth for Education Advocacy and Healthcare.  They are supported by NHFV and PIC.  They meet monthly on Zoom.  Ansley shared the link in the chat to check out their podcasts.


2024 Council Meeting Dates: 


  • Wednesday, March 20th at 5:30 PM
  • Wednesday, May 15th at 5:30 PM
  • Wednesday, September 18th at 5:30 PM
  • Wednesday, November 20th at 5:30 PM


Meeting Adjourned.


Action Items

Karen, Tim, and Leah will meet to discuss the budget and the Legislative Luncheon.

Karen will reach out to Community Partners for an updated budget.

Karen will talk with Dee about a potential candidate for a Community Organization Liaison.

Dee will look into whether results/follow up from the Emergency Exercise Simulation were shared with DHHS?

Leah will send out an email regarding Committee participation.


**The Council met on Wednesday, January 24th, at 530 to vote on approving Meeting Minutes, the Budget, and the Open Officer Positions.  The November Meeting Minutes and the Budget were both approved.  Kristin was voted in as the new Vice Chair and Karin was voted in as the new Secretary.


Minutes prepared by Kristin Bonny