Meeting Minutes

Council for Youths with Chronic Conditions

October 6, 2021
Zoom meeting 5:30-7:30pm

Attendance

Audrey Gerkin, Karen Livernois, Tim Guidish, Betty Gay, Josh Hilliard, Regan Lamphier, Leah Stagnone, Deirdre Dunn Tierney, Kate Bailey, Laurie Fleming, Harohalli Shashidhar, Deodonne Bhattarai, Kristin Bonny.

Betty approved of all 3 proposals prior to the beginning of the meeting.

Announcements (Karen Livernois)

Congratulations to Audrey who is the new Council Administrator as of September 7th, 2021. Karen is acting chair and vice chair.

Secretary Report Meeting Minutes from August 4, 2021 (Kristin Bonny)

No Corrections were requested. Kristin made a motion to accept the meeting minutes for August 4, 2021. Tim Guidish seconded the motion. All were in favor, Regan Lamphier abstained.

Treasurer’s Report (Tim Guidish)

Shared information regarding new pay structure for Council Administrator position, Admin Salary was increased to compensate for lower benefits. Each item was reviewed. The Web Redesign will be between $10-13,000.00. This leaves a remainder of $15,000.00 for strategic initiatives.

Regan made a motion accepting the budget, Tim seconded, all present were in favor, no abstain.

Membership (Audrey Gerkin)

Potential New Members

1. Nicole Parker, PIH Family Council (not present). Nicole’s Application was sent to the council for review prior to tonight’s meeting.
2. Kate Bailey introduced herself to the council. She is the NH Director of the Epilepsy Foundation New England’s AmeriCorps Program. She shared that they are looking to place Epilepsy Resource rooms throughout the state.

The Council still needs a member from the Senate and one from the Dept of Ed. Dee will send some suggestions for the Community Based Member. We also need more parent members. The overall limit for the council is 27 members.

Needs Assessment (Audrey Gerkin)

Sylvia met with JSI to have their proposal revised to focus more on qualitative data collection and analysis versus quantitative data. The cost went up due to the increased time needed to conduct in person interviews and focus groups.

Discussion continued assuring the council that diversity of participants included in the Needs Assessment is a priority as well as including both the insured and non insured. The CYCC will have a significant Stakeholder group involved throughout the Needs Assessment.

Dee shared that her experience with JSI has shown them to be flexible and experienced with working with Public Health Agencies.

In order to assist with including participants from diverse backgrounds, Audrey will reach out to Building Community NH for participants. Dr Shashi will get the word out to his patients and refer them to Audrey or Sylvia if they are interested in participating.

Completion of the Needs Assessment is possible by May of 2022. The contract stipulates June 30,2022 as a final date. The contract is ready to send to JSI.

Correction to the Needs Assessment Completion Date

The full proposal from JSI is looking at a full year completion ending in August of 2022. The formal end date will be September 30, 2022 to catch any loose ends that may still be around.

Kristin Bonny made a motion to accept the Needs Assessment Contract, Tim Guidish seconded. The Council unanimously voted to accept the contract. Ann Marie voted to accept the contract prior to the meeting.

All members were informed of the revised completion date via email a week after our meeting and still approved accepting the contract with JSI.

Response to Letters from Representative Gay (Deirdre Dunn- DHHS)

Representative Gay sent a letter to Jen Harper, the Director of Homeland Security. It informed her that the CYCC would like to be connected with emergency preparedness planning in the future. Director Harper responded that Rep Gay reach out to DHHS division directors regarding our concerns. Dee Dunn advised us that we be specific in what we are asking.

The letter was then shared with Patricia Tilly, the Director of Public Health, and Lori Shibinette, Commissioner of DHHS. It shared concerns CYCC has over being heard in matters like the vaccine roll out and future emergency preparedness. Patricia Tilley responded quickly. It was recommended that we come up with specific asks for the commissioners to address.

Director Tilly informed us that there may be many anti-vaccine bills proposed this legislative session. She suggested that we may want to have someone designated to watch for these bills and that it would be important for families to share their stories and concerns.

Suggested asks that were discussed:

Representative Gay suggested finding a senator to propose a bill to set up a committee to examine the health disparities that occurred during the vaccine rollout. It was pointed out that the IOD conducted some round table discussions regarding the vaccine roll out and that we may want to look at what they have already done.
Have the state come up with some sort of mechanism to find out what each hospital’s plan is for disasters and rationing and/or prioritization (which may happen more often) of care. Each Hospital has their own policy and they are not public. Discussion continued that Prioritization may be happening now due to staffing shortages.
Addressing misinformation around Covid. ABLE NH has made statements about misinformation, Leah will check in with Lisa about what she is working on regarding this topic. IOD has a working group on this topic as well. We may want to make sure we touch base with them.

Dee will respond back to Commissioners and thank them for their quick response. She will let them know that we will be reaching out to IOD for more information on the above mentioned working/focus groups and that we will work on putting together more specific asks of the Departments.

Deodonne will reach out to the IOD for more information about their working groups.

Title V services update (Deirdre Dunn-DHHS):

Dee shared updates on the Title V Survey. They are looking at how they can help providers in care coordination?

Their Internal group is meeting weekly reviewing standards of care. They recently met with the Author of the Standards of Care and the Feeding and Swallowing program. Members of the Feeding and Swallowing program were in favor of moving toward Eligibility Determination happening once then having a case manager help families receive the services that are needed without having to go through eligibility determination for each program.

Dee met with providers and it was decided to do one more year of modified Care Coordination while they continue to look at methods for improving the process.

More stakeholder groups will be called in as decisions are made. The needs assessment will be helpful for the survey.
The upcoming November meeting for stakeholders will be about focus groups.
The January meeting will be a Crosswalk with Healthcare coordinators and Partners in Health Coordinators.

Dee is willing to share any of the presentations that they have had or will have with the Council.

The CYCC can help if more parent input is needed. Dee will reach out to Audrey and Karen if help is needed.

Website Update (Audrey Gerkin):

RFP for a website developer was completed and sent to the following companies.

Roni Lagin- sent a proposal, their cost was high and they would not discuss negotiating.
Greenlight- our current web host has not responded yet.
Loud Canvas- located in Dover. Will write a proposal. They want the top end of our budget plus 250.00/month for 24 months hosting maintenance and support. They want to use Userway for Accessibility instead of WordPress. Discussion began that 250 is expensive and Userway is a free widget that has been criticized for not meeting accessibility needs. Audrey has only been able to talk to marketer not developer.
First Tracks- completed DRC’s Website. Developer talked with Audrey and they will meet again on the 19th. He understood the Accessibility needs of the website. He will put the time into the accessibility instead of a widget add on. He will also create training videos for CYCC to have for future council members that may require training. There is no charge for hosting. He will use a lot of Google platforms to keep the cost down. They have not submitted a formal proposal. He does know our budget and feels that they would be able to meet our timeline. The logo was discussed and they can handle that as well.
Amala Design Studio- did not respond
Windhill Design- did not respond
Bandartica Logo and WordPress- did not respond

Audrey will continue to talk with First Tracks and Loud Canvas. Hopefully Greenlight will submit a proposal. Proposals are due by November 1st, we will vote on proposals, as a council, at our December meeting. Completion of the website will hopefully be by the Spring.

Annual Report:

Audrey will have this done by December 1st. Kristin, Karen, and Deodonne will assist.

COVID and Return to School health policies (Continued)

NH DHHS hosts a weekly Childcare and Educational Institution Partner Call every 1st and 3rd Wednesday of the month. All childcare and educational partners are invited to attend. This includes childcare staff, school nurses, administrators and staff: Audrey was able to attend and shared some of what was discussed.

Schools have been flexible in coming up with strategic plans for individual children at greater risk from Covid, who attend schools with no mask mandate. It was mentioned that children are often being excluded by these strategic plans.
Covid testing is becoming difficult to get, especially in the Seacoast. The state is looking into hiring the National Guard to help with testing appointments. Testing in the schools was approved by some school boards but not enough staff to conduct testing.

Our discussion continued around the lack of empathy from the public in regards to mask mandates and keeping others safe. The lack of understanding that the mask protects others not you and how do we get that message across? Messaging coming from some MD’s is problematic too.

We discussed what is our role in shaping the dialogue? Should we have talking points when we find opportunities to weigh in. We would have to be very careful and keep in mind “dueling disabilities.” The need for mask mandates to protect those at greater risk versus the rights of those who medically can’t wear a mask.

The DOE issued new guidance on returning to school which addresses some of these issues. Discussion continued of various ways we can help.

We should direct parents to contact the DRC if they have concerns regarding their child’s rights.
Do we want to create an OpEd with personal stories to share? What happens if our children with special medical issues contract Covid?
Email school board members that are taking precautions letting them know they have our support. School districts are losing school board members due to abuse from local citizens.

Audrey will try to come up with a statement or family stories to potentially share. She will come up with basic talking points to be prepared for upcoming anti-vaccine bills as well.

It was also pointed out to consider using language around opting in versus opting out. Legislatures are more receptive to you having to “opt in” versus opt out after the fact, in terms of vaccine registries.

Elections: Elections will be held at our January 19, 2021 meeting. The Vice Chair position is available. The Council was asked to notify the Executive Council if interested in running for a position.

New Members: Applications were reviewed by the council. Audrey made a motion to accept Nicole and Kate as members of the Council. Laurie seconded. All were in favor. AnnMarie voted in favor, prior to the meeting, for Nicole.

Meeting Wrap Up: Audrey shared a Google Docs link for the council to have access to CYCC Documents. Next was set for January 19th. We will hold elections and set dates for the remainder of the year.

Action Items:

Dee will send some suggestions for the Community Based Member.
Dee will respond back to Commissioners and thank them for their quick response to Rep Gay’s letters of concern.
Deodonne will reach out to the IOD for more information about their working groups around vaccine rollout inequities and Covid misinformation.
Kristin, Karen, and Deodonne will assist Audrey with the annual report to be completed by December.
Audrey will try to come up with a statement or family stories to potentially share. She will come up with basic talking points to be prepared for upcoming anti-vaccine bills as well.
Website Audrey will continue to talk with First Tracks, Loud Canvas and Greenlight.

Upcoming CYCC meetings:

December 1 2021 5:30-7:30pm (Annual Report Due)
Jan 19, 2021- Annual Meeting