2019 Meeting Summaries

Meeting: January 9, 2019

Agenda and Summary:

Staff Support-Discussed developing job description for new Council Administrator position. Important to have someone with knowledge of children with chronic conditions, ability to navigate complex situations, technical and organizational skills, and public speaking, oral and written communication skills.

Department Updates– Division of Long Term Supports, Chris Santanelo has moved to Housing Development and Deb Sheets has stepped into her position.

Board Roles & Updates– Joelle Martin has stepped down as Chair. Audrey Gerkin was nominated as Chair and approved. Board discussed its role regarding legislation and will continue to review and discuss relevant bills as they arise.

Champion Luncheon– Luncheon costs broke even thanks to sponsorship by WellSense for $2500. Anthem did not come through. Ice cream sundae bar was sponsored as well.

Council membership-Members are encouraged to bring suggestions for new members. We are looking for new parent members. Timothy Guidish’s application membership was discussed and approved.

Board meetings- Council meeting schedule should be posted on line. If there is a call in number this should be posted as well for public.

Retreat-Currently council retreat is scheduled for April 23-24 at the Mount Washington Hotel. This will be discussed at next meeting.

Legislation– HB 275 opposes school nurse certification. Hearing is January 22, 2019 at 1. There is also a LSR to bring school nurse consultant to the DOE.

Next meeting February 20, 2019 6 PM at Upham Walker House in Concord.


Meeting: April 17, 2019


Meeting: September 18, 2019

Agenda and Summary- Welcome meeting for new Council Administrator- Pamela Becker

Secretary’s report- Discussion and approval of January and April minutes

Treasurer’s report- The new CYCC 2020 budget was submitted with the total at $104, 125. There is currently $22, 963 in special projects as of 7/31/19.

CYCC Annual Report-CYCC annual report not submitted for 2018. Secretary will work on report for 2018 and 2019 using prior template and pictures from past two years.

Champion Childrens’ luncheon– Council unanimously decided to post pone the luncheon until April for several reasons. We will look for a more kid friendly venue. Tickets and criteria for selection were discussed. A separate award titled Maggie Hassan World Changer Award was also discussed.

New Member recruitment-Four new members were voted on to the council. Ann Marie Van De Water, Karen Livernois, Kristen Bonny, and Heidi Petzold.

Filling Representative for the Council– Discussed bylaws listing for membership of council: 13 parents, 2 legislators, 6 community agencies, 1 parent appointment by governor, one member under 30. Council discussed asking specific agencies to be a part of the council including: Institute on Disability, Family Voices, School Nurses’ Assoc., Disability Rights Center and the Pediatric Assoc.

Future meetings; October 16, 2019  at 6 pm.

Future goals: The Council spoke more about focusing on advocacy. Deodonne spoke about SMA being added to the newborn screening but even though it was signed into law last year it has not been implemented yet. We discussed our role in getting legislation passed.


Meeting: October 16, 2019

Agenda and Summary: Meeting held at Bow Free Library

Secretary’s report- Minutes for September were approved

Treasurer’s report-Total budget is $104, 125. Total spent thus far is $14, 388. Special projects and initiatives budget is $22, 963 which includes savings from salary last year of $19,000. Budget includes other two councils, Discussed parent stipend amount of $60 per meeting. This was approved.

Champion’s Children Luncheon– Administrator spoke with Christa McAulliffe Planetarium and released the November date that was reserved. She will be in contact them about a date in April to celebrate the Champion Children’s event.

Annual Report: Secretary has been working on this report.  Joelle sent several pictures, but she needs to get the drive..

Website/Social Media: Administrator has been updating the website and has started a new Facebook page.  The host company is Notchnet.  She reports that addresses needed to be changed for billing and that we were not listed as a non-profit.  The council uses the fiscal agents tax ID# since we are a Legislative committee and do not have 501 C-3 status.  The rate is $336/year which will be discounted.  The website is paid through March 2020.  For now, the council approved the use of Facebook and Twitter for the social media accounts.  She added that we need to be careful with Twitter which doesn’t have the best cyber security.

Visioning Retreat: Administrator is setting up a day in January for a visioning retreat.  The morning would focus on Advocacy Training with New Futures, and the afternoon would be for visioning and goal setting.

Outreach for Member Recruitment:  There was discussion about Administrator reaching out to Visiting Nurse Associations, the Pediatrics Association, and to look at various professional communities with the intent to expand the types of chronic conditions represented.

Tentative Issues for CYCC:

  1. Newborn Screening:  The SMA newborn screening that was added into the law last year still has not been implemented.  It is being brought before DHHS for the Newborn Screening Committee to look at due to funding issues.  The council spoke about asking Rhonda Siegal to come and talk about how decisions get made for newborn screening.
  2. Medicaid in Schools is now being transitioned to the Medicaid offices. In the past, the schools would bill Medicaid and receive half of the funds because it was matched with school funds.  Behavioral Health Services will also be funded to service students that may not have an IEP but have a need.  Jane Hybsch is the director for this program.
  3. Early Intervention LSR that involves insurance billing (private insurances). The LSR advocates using the Massachusetts plan that requires the insurances to pay first prior to using any out of pocket deductible expenses.
  4. Discussion about grants and initiatives spoke about the past practice of having financial partners that loaned money to parents. We no longer participate in these initiatives because of the loss of financial partners.  This council has been more system-focused and that is where the funding goes.

Next meeting will be Retreat in January, 2020.