Council for Youths with Chronic Conditions
September 20, 2023
Zoom meeting 5:30-7:30pm
Attendance
Kristin Bonny, Karen Livernoise, Josh Hilliard, Laura Sirignano, Deirdre Dunn Tierney, Ansley Peacock, Karin Mortimer, Betty Gay, Regan Lamphier, Leah Stagnone, Tim Guidish.
Introductions given for new members and visitors
Secretary’s Report (Kristin Bonny)
May 17, 2023 meeting minutes were sent for review prior to tonight’s meeting. Kristin made a motion to accept the minutes, Karin seconded, the motion passed.
Treasurer’s Report (Tim Guidish)
Tim shared updates to the budget.
- We need to keep the phone line through Community Partners.
- We are a little over for Champion Children because it was held in the 1st quarter of this budget year.
Summer Camp Donation update.
- We received thank you’s from (Camp Allen, Zebra Crossings, and the YMCA.
- The YMCA -printed their thank you in their Alliance newsletter.
- Feedback from the camps will be attached with the meeting minutes for review.
- Suggestion made to add Lions Camp Pride lionscamppride.org to our list of potential camps to support.
The Council sponsored a car for Go Baby Go.
Audrey Gerkin Leadership update.
- Funds have not come out of the budget yet. Karen will send contact info to Tim who will reach out to the IOD for the invoice.
- Karin and Kristin gave an update of their experience so far.
Kristin made a motion to accept the budget and Karin seconded, the motion passed.
Membership (Karen Livernois)
Update given on the following open positions.
- Dept of Ed- still waiting for Commissioner Edelblut to respond/appoint liaison.
- Community Organizer member- Dee spoke with Melissa Hugner from Waypoint. She is interested but would like more info. Dee will connect Karen and Melissa.
Welcome to Lauren Sirignano, our new parent member.
Update on Council Director Hiring Process (Karen Livernois)
The Executive Council updated the job description and changed the title to Council Director instead of Administrator. The new title aligns more to other similar agencies. The Job posting is active on Community Partners Website and LinkedIn.
- There are 4 applicants as of this meeting.
- Karin has reviewed those applicants and will send them to the EC for review.
- The EC will decide when to stop accepting applications.
- Community Partners will need to review applications after Karen and the EC.
Karen shared the EC’s concern that it is important for the new Director to have working knowledge of support services in the state of NH and the NH legislative process. The council was asked to encourage people to apply.
The Memorandum of Understanding (MOU) with Community Partners was amended to reflect the change to the Council Director position.
Champion Children’s Awareness Event Recap
There was a good response and the recipients were thankful. Mighty Max, one of the winners, added a summer toy drive as a result. Audrey posted pictures and info from that event on our website.
Discussion continued on what worked and what changes to make.
- Schedule the last planetarium show earlier.
- Work on scheduling volunteer jobs so that no one is stuck at a station and misses the event.
- Planning committee should start earlier.
Family Support Conference recap
CYCC participated in the Tabling event on Saturday and displayed the Photo Voices project. Audrey and Karen were able to engage with many interested families and organizations.
A history and explanation of the Family Support Conference was shared with the council.
- It has been happening for 30 plus years.
- Worked to include families with chronic health conditions.
- Area agencies usually scholarship the event for families.
- The conference consists of presentations and learning sessions.
- Each year proposals are submitted for learning sessions. Family representatives actually score what would be well received.
- DHHS sponsors by providing coordination for the conference.
Agency Report (Dee Dunn)
Dee shared about Audrey’s new role as the Systems of Care for Children with Special Health Care Needs Specialist.
- Instead of seeking the Health Homes and CMS planning grant opportunity Audrey will be working with Medicaid to draft a state plan amendment for a Home Health Option for Medicaid.
- A Family focus from the beginning is needed. They will be looking to form a planning group and would like CYCC participation.
Discussion continued around the redesign to Health Care Coordination (HCC) formally Partners in Health. PIH ended at the end of August, a small extension was given to region 10. Issues/Items discussed were focused on outreach to affected families.
- Currently there is no HCC in region 5, 7, 10. PIH only in region 6.
- Families in affected regions should have received a letter regarding the changes.
- The Agency is still there to help those families that are not covered.
- They are not getting feedback from families-from their outreach.
- Working with NHFV, asked them to reach out to families for a family forum.
- Reach out to the Family Councils and have NHFV work with the councils to help get feedback from families.
- They have beefed up the upcoming Needs Assessment as a result.
- 8 month learning cohort that would help with the needs assessment strategic plan.
- Hopefully, one of the action items will be the Health Home.
- Our council is needed to help with info/feedback.
603-271-4488 is the correct phone number for HCC and PIH questions. The number in May’s Meeting Minutes was incorrect.
Karen will talk with Dee offline to discuss issues in her region.
Area Agency- new CMS rules took effect in July.
- Let Dee know if you have any issues with Family Support Dollars.
- Change to waiver dollars being used for recreation.
Annual Report
Due in December. Audrey shared a template with Karen. Karen will be reaching out to council members to help put this together. It will be good to have it before January when we vote in new officers. It has to go to the Governor. We use the report for marketing and info dissemination.
Potential Events
Disability Awareness Parade this fall (ABLE sign up)- CYCC will be looking into participating.
Early 2024 Statehouse Luncheon/Legislator Meet and Greet. Need a few people to help table this event.
Fall 2024 Gubernatorial Town Hall Meeting.
Karen will be taking over participation in some of the meetings that Audrey attended on behalf of CYCC and will continue communication with those stakeholder meetings that she does not attend, until the new Director is in place.
Karen will send out dates of potential events for Council participation.
- Two or more people are needed to table events.
- Please let Karen know if you are interested in participating or of similar events that we may want to be a part of.
Policy Focus
HB467 – Playground bill was signed but no ceremony.
- Helped a Concord Playground
Disability Roundtable Meetings are starting soon. Karen will attend.
Final Questions/Discussion
Karen and Audrey are keeping the Website updated.
Audrey is still helping and will continue to help with the transition to a new director. She has been working for free. Discussed paying her for her time. There is money in the budget for this. It was determined that paying Audrey to help with CYCC business would be allowed because it would be outside of her work hours and not part of her current job responsibilities.
A couple new parents potentially want to join. Karen will keep in contact.
- The EC or a nominating committee can vote in new members instead of waiting for a Council meeting.
*2023 Council Meeting Dates: Nov 15
Action Items
- Feedback from the camps will be attached with the meeting minutes for review.
- Karen will add Lions Camp Pride to our list of camps to donate to.
- Karen will send Tim the contact info for NH Leadership to request the invoice for the sponsorships.
- Dee will connect Karen and Melissa Hugner regarding Community Organizer member opening.
Meeting Adjourned
Minutes prepared by Kristin Bonny