Meeting Minutes

Time: 5:30 - 7:30 pm

Date: November 16, 2022

Location: Zoom

Council for Youths with Chronic Conditions
November 16 2022
Zoom meeting 5:30-7:30pm 

Karen Livernois, Tim Guidish, Chris Santaniello, Adriana Lopera, Tatianna Trojner-HilI, Alyssa Carlisle, Chris Kozak, Dee Dunn-Tierney, Audrey Gerkin, Subha Kadasamy, Regan Lamphier, Michele Caswell, Sylvia Pelletier, Karin Mortimer, Deodonne Bhattarai, Senator Becky Whitley, Senator Tom Sherman, Leah Stagnone, Representative Betty Gay, Laurie Fleming, Nicole Parker, Josh Hilliard, Kristin Bonny


Chris Kozcak, Executive Director of Community Partners introduced himself to the council. 

Shout out to Regan Lamphier for receiving the Kathleen Murphy Community Partnership Award.

JSI Presentation
(Adriana Lopera, Tatianna Trojner-Hill, and Alyssa Carlisle) 

The presentation began with a background of who JSI is, a review of  the definition of Chronic Condition used for the assessment, reasons for conducting the Needs Assessment, and a review of the methods and research objectives used to conduct the Needs Assessment.


Limitations of the Needs Assessment

  • Convenience sample- absence of quantitative data
  • Inadequate representation of communities who experience greater inequities
  • Difficult to exclude families who are eligible for area agency services. 


Key Findings by Research Objective

The full report has more information regarding findings.  We will have access to the slides from the presentation.


  • Research Objective 1 Financial Impact
    • Families shoulder a high percentage of the medical costs.
    • Because of these costs, they are unable to afford the needs of daily living such as rent/mortgage, car, utilities, etc.
    • unable to afford extras.
    • Caregiver employment is often affected.


  • Research Objective 2 Holistic Impact
    • Chronic stress and need for mental health support for caregivers.
    • Caregiving often falls on one parent causing stressors between caregiving parents.
    • Families feel isolated socially.
    • Children feel isolated behind their peers in school.
    • Siblings may feel that they receive less of the attention-Mental health supports needed for siblings.


  • Research Objective 3 System of Care
    • Trouble navigating for families and providers.  This causes a loss of information regarding resources. 
    • Schools are a valuable resource of support.
    • IEP and 504 plans not being followed. Parents often have to become advocates.
    • Transition services exist but vary across the state.
    • Lack of access due to financial eligibility.
    • Workforce shortage affecting ability to utilize services that exist.


  • Objective 4 Communities with greater challenges

Most of the findings for these communities were from providers.


Recommended Areas of Focus

  • Strategic partnerships
    • Continue to strengthen relationships with Partners in Health.
    • Explore school relationships.
    • Consider diversity in engagement and recruitment.  Recommended to start engaging with organizations that already serve those communities.
    • Partnerships with organizations that serve those communities that experience greater challenges.


  • Advocacy
    • Interoperability of data systems.
    • Increasing Healthcare workforce.
    • More accessible communities.
    • Better integrated comprehensive system of services and benefits.


The presentation was opened up for questions/comments.  

  • Discussed the need for better, less fragmented care coordination. 
  • The full report has results of insurance questions and a breakdown of the type of insurance; private, public, and dual eligibility.

Suggestions made during the discussion.

  • CYCC should work with the State Health Assessment State Health Improvement Plan Advisory Council, chaired by Representative Knirk and the Subcommittee mapping services.

DHHS is doing a study of Medicaid and the intersection with non-Medicaid programs and gaps that exist.  They will use the needs assessment to help with this study.  They will be looking at what states are doing a better job.  

Suggestions made to DHHS regarding care coordination and financial impact on families.

  • What private insurance says it covers and what they actually cover whether due to services not contracted or no codes for the service. 
  • Rising deductibles making covered services unattainable or worsening financial impacts.
  • Look at work previously done in Children’s Mental Behavioral Health around care coordination. NH modeled their behavioral health system of care on that of New Jersey. How is New Jersey’s system of care now?  

DHHS will be reviewing the care coordination conducted by MCO’s.


The ACE Act beginning October 1st  will allow states to have extra funds for care coordination.


Email Adrianna at JSI if we have more questions.

Audrey has a more detailed report if we want more information. 

The Report will be posted on our website.  

Hard copies will be made for disbursement.



Secretary’s Report (Kristin Bonny) 

  • May 18th, Meeting Minutes approved, Kristin made a motion, Regan seconded.
  • August 17, Meeting Minutes approved, Kristin made a motion, Tim seconded.

Treasurer’s Report (Tim Guidish) 

Copies of September’s and October’s budget were reviewed.  Council is within parameters of the approved budget.  Waiting for word from Community Partners regarding occupancy fee- we don’t have space there.  

Discussion around Parent Stipend-requirement form being a barrier.  Forms are not being sent in.  Can we use an electronic signature? Audrey will discuss this with Community Partners. 

Payment to GSIL for Town Hall Debate was discussed.  Audrey suggested $500.00, Tim seconded.  $500.00 Payment approved to GSIL.

Membership (Karen Livernois) 

Upcoming Annual Meeting elections in Jan 2023 Karen or Audrey will send out job descriptions to council.

New Member Application submitted by Michele Caswell.  Michele introduced herself to the council.  Application was reviewed by council members prior to the meeting.  Vote to accept Michele as a member of the Council was unanimous.  Vote held at the end of the meeting.   

Dept of Education appointee-  Audrey met with Commissioner Edelblut.  He is reluctant to provide a DOE employee due to confusion regarding his ability to compensate that appointee for their time.  Audrey will follow up with him again. He was open to having a parent fulfill that role and willing to set up regular meetings with that parent.  Dee will reach out to some people that might be willing to take on the DOE appointee role.

Representative Betty Gay will no longer be our NH House Appointee effective January 2023.  She was invited to continue coming to our public meetings.

Annual Report (Audrey Gerkin)

The Council was able to review the report prior to the meeting.  Annual Report Approved.

Discussed the pricing options for printing hard copies of the Needs Assessment for sharing.

Audrey will ask JSI  if they can shorten the report to help with the printing cost. Would like to get to 80 pages or less. Pricing given for Community Partners’ Printing company and Staples.

Discussion began regarding who would be receiving these reports. We have several upcoming events that we would want to have copies available for.  Could we do reports without slides and appendices? Consider doing a summary report for legislatures.  Send summary printouts to HHS, education and finance legislators in both houses.  

Include a link to the data instead of printing it.

Audrey will email the pricing list to the council for review.  

We also need a list of who we want to send reports to.

Agency Report (Dee Dunn) 

Health Homes Project update-  Applying for a planning grant- research what it would take for NH to provide that.

Quality improvement project update-  

  • Over 65 people attended the Nov. 1st stakeholder meeting, it was a very diverse group.
  • They have started working with the contract unit to draft RFP’s. 

Currently it is being called Health Care Coordination with Family Support and will offer the services that Partners in Health offers plus care coordination and access to the nurse consult program.  Dee requested feedback regarding what to call it, should it reference Partners in Health, for example, Partners in Health Expansion. Feedback was that the name should not be Partners in Health due to prior understanding of the scope of Partners in Health services.

Data system update-  

  • They are getting an estimate of cost to request ARPA funds.  
  • Looking into whether they can use the same system that Deloitte developed for BDS. 

NH medicaid services evaluation by Mathematica is looking for families, to interview, who have worked with medicaid and other DHHS services.  Dee will forward fliers to Audrey to share with families if interested in volunteering. Dee will ask how widely to spread the flier. 

Insurance Department Report (Josh Hilliard)

Audrey has been talking with the RARE Advisory Council, they want to put together a coalition with other interested groups.  They are working on Legislation around formula that is not covered by insurance.  Audrey will continue to meet with RARE.

The Insurance Dept is monitoring bill 228 Increasing Health Insurance Coverage for Non-prescription Enteral Formulas. The Insurance Department will monitor it and Josh will keep us updated.

LSR’s are coming in now.  The NH House will meet at the end of January.  

Policy Focus 

  • Crisis Care Plan completed at the end of June.  
    • Audrey attended prep exercises facilitated by FEMA for NH along with Dr Sashi.
    • Planning for a mock emergency in April. 
    • Pediatrics will be a focus during the mock emergency drill.  
    • Dr Sashi will be stepping down as a member of the CYCC but he will be staying on as a medical consultant.  He is looking for an ER doc to take his place for the mock emergency planning.
  • Private duty nursing-  Leaders in MA and PA along with Audrey and Heather Young are working to create a National Coalition for Private Duty Nursing.   
    • Submitted to present at the National Disability Policy Seminar in Washington, DC.
    • Meeting with The Little Lobbyists.
    • Trying to get other leaders from other states.  

Discussion around what “60% of nursing hours unfilled” really means. What is the number of hours requested?  Nursing agencies don’t want to report that they can’t provide those hours.  DHHS can not get accurate information.  

The Parent Payment Program was recently extended.  Waiting for CMS to approve 1915J Waiver to get federal funds to support this program


Coming Into Focus: PhotoVoice Gallery Exhibitions: TBA dates and location.

Bipartisan Disability Caucus – Panel discussion on Needs Assessment and gallery exhibit (1/2023)

  • Volunteers needed to help set up, and stay for opening night.  Exhibit will stay set up for a week.  Audrey has put out a few requests.  
  • Need easels-  Tim will look into cost.  
  • Deodonne will send Audrey info around ordering tabling supplies.

Next Meeting Annual Meeting January 18, 2023

  • We will discuss the number of meetings to have going forward.  
  • July is National Chronic Health Awareness month, maybe we hold a BBQ or Champion Awards.  Discussion to continue in January.


Prepared by Kristin Bonny