Meeting Minutes

Time: 5:30 - 7:30 pm

Date: May 5, 2021

Location: Zoom

Council for Youths with Chronic Conditions

May 5, 2021
Zoom Meeting 5:30-7:30pm


Audrey Gerkin, Karen Livernois, Pam Becker, Tim Guidish, Deirdre Dunn Tierney, Sylvia Pelletier, Regan Lamphier, Kristin Bonny, Laurie Fleming, Josh Hilliard, Betty Gay, AnnMarie Van De Water

Secretary Report

Changes to be made to March 24th minutes. Amended minutes will be sent out for review by May 6th. Minutes may be approved via email.

Discussion began regarding the nursing shortage and could we, in conjunction with other organizations, offer housing as an incentive, especially to attract nurses from other countries. CYCC wouldn’t be in a position to offer housing. CYCC’s role would be for educating the public on the nursing shortage. We have had a subcommittee working on addressing the nursing shortage in the past and we could revisit that again. The DHHS Brief on Private Duty Nursing was sent out in the May 3rd email from Pam and has a wealth of information on this issue. It was pointed out that according to the RSA that governs CYCC, we are chartered with making sure that children are getting what they in need in order to be in home or close to home and the nursing shortage issue is part of that. Finally, it was pointed out that the CYCC might not be able to solve the problem but we can inform the work that DHHS does on issues such as the nursing shortage, including how Title V funds could be spent to help address the nursing shortage or other issues that affect our community.

Treasurer’s Report

Discussion began with a summary of what was discussed and recommended at the Executive Council Meeting.

  1. Transportation budget lowered from $2000 to $500 this still covers 1300 miles per year.
  2. Not a lot of spending due to pandemic so moved more money to Strategic Initiatives. We have $12,500 for this year plus the project funds of $55,782. This could be used for the Needs Assessment.
  3. Champion Awards increased to $3000 since we did not have an event last year and we want to make it a special event this year.
  4. Conferences/Meetings and Office Supplies can be adjusted if we want to add more to the Needs Assessment.
  5. Marketing stayed the same due to upcoming upgrade of the website.
  6. 236.00 per year for the domain name and website maintenance should be considered under marketing. It was not previously included.

Pam will meet via Zoom with a representative from the Greenlight, the company that hosts our website to see what we are getting for our money and possible upgrading. Asked for others to join the meeting and will send out Zoom invite to those interested.

  1. Tim will wait to hear from Pam regarding meeting to see if we need to add to the marketing budget.
    1. Budget accepted.


Karen’s appointment to Gov Sununu’s office is Official. Other outstanding appointments are representatives from the Department of Education and the Senate. Pam will follow up with phone calls to see what is holding up the nominations. She stated that it would be helpful to have a name of someone we could propose to fill those positions. It looks unlikely that the nursing position will be filled.

Karen and Audrey are working on updating term membership guidelines.

Pam has forwarded a Recruitment letter to send to agencies for review and will send it out once approved to those organizations with a NH or New England presence. Pam will send out her list of organizations so that members can add to it.

Website Update

Pam has created a list of questions for Greenlight regarding use on mobile devices, accessibility features, cost of hosting and domain ownership, and support services. WordPress seems to be the most widely used website platform and the most user friendly. Based on Pam’s research it is looking like upgrading our WordPress website would be the best way to go. She will be meeting with our webhosting company Greenlight on Tuesday May 11th at 11am to discuss what we currently have in terms of supports and services and what we are looking for. She will send out the Zoom link to anyone who would like to attend the meeting. Karen will touch base with Pam to discuss more in depth the webhosting issues.

Needs Assessment

Sylvia and Terry have been working with Kim Firth at the Endowment for Health and Sylvia talked with Holly Tutko and Jo Porter at IHPP (Institute for Health Policy and Practice) about working on a Needs Assessments. Kim suggested that the RFP be drafted first to get some proposals because we need know the cost of the Needs Assessment before we can submit grant request. Kim is willing to take the lead on drafting the RFP along with Sylvia and Terry. Sylvia requested that Pam and one parent from the council be involved with this process. Whoever becomes the principal investigator will convene the work groups, create the surveys, compile the data, and give us a final report to share. The RFP will define who we want to participate and what the process will look like. Kim has sent Sylvia and Terry some sample RFP’s to review. Once we have identified a parent from CYCC who is willing to work on the RFP, Sylvia will set up a meeting with Kim to begin putting the RFP together.

Discussion continued, who would the RFP be sent too and how that would happen. According to Sylvia, Kim at the Endowment and IHPP know how to do this work and will have the contacts to send the RFP too. The most important thing for us to do now is to decide who we will have on the steering committee for the Needs Assessment Project. This group is important because we have the connections to the families and diagnosis specific organizations to get a good turnout for focus groups and surveys.

Pam forwarded the email with Kim’s notes about the fiscal agent to Sue Bagdasarian. Pam will follow up to make sure that they are okay with being the fiscal agent, with Pam working with their grant writer to get the documents relevant to Community Partners and working on that part of the application.

Dee pointed out that DHHS will be doing a needs assessment in the Spring of 2022. They have a new data person (Suba?) and Dee would like her to be involved in the steering committee so that when DHHS does their needs assessment it will complement the CYCC’s, not duplicate it.

Discussion continued that it would be ideal for CYCC to have their Needs Assessment in process prior to the Bureau’s to help inform their Needs Assessment. We will want to identify Suba? as a participant on the Steering Committee.

Clarification was given on who the Needs Assessment is assessing. We want to determine the unmet needs specific to the population of children with chronic health conditions. For instance, there are children with chronic medical conditions who don’t qualify for area agency services. What are their unmet needs? What are the unmet needs of the whole system? We want to make sure we have responses that represent all of the chronic health conditions from various age groups, various insurance coverages, and various parts of the state. Some examples of known unmet needs were shared.

It was asked if there was a place that a person could email or call to submit their needs or concerns and get help. It was pointed out that there is a number for Special Medical Services but that it is not widely known and that CYCC would be the organization to help get that information out there. The email address to reach us is on our website but our organization is not as well-known as it used to be. We are working to change that, to get our name and what we do out to the public. Overhauling our website will also help share important information with families.

Next Steps for Needs Assessment

Sylvia will get in touch with Kim next week and they will begin drafting the RFP. Sylvia will get back to us at the June meeting to let us know when it might be done and ready to send out for Proposal responses.

Discussion continued on when the Needs Assessment might be completed. Possibly within a year. We will hopefully present it at a Gala. We have a deposit still at the Christa McAuliffe Museum. Pam will call to verify that they can hold that deposit until we are ready for the Gala.

Champion Awards

Kristin and Laurie discussed creating a video along with Audrey describing who we are and what we are asking for. This video will be sent out on List Serve and will hopefully be shared to as many interested parties as possible. Discussion continued on the increased budget of $3000 for gift basket rewards to the top five entries and gift cards to the remaining entries, depending on the response. It was highlighted that we should make the prizes big. Kristin and Laurie will meet again in a few days to discuss next steps.

Title V review and Needs Assessment

Dee shared that the Bureau would like to start looking, with the stakeholders, at what really are the needs and what are the recommendations and how they could better use their funds. They are considering redesigning the way they deliver services. They want to make sure that they are not duplicating services. For example, duplicate applications for different services within the Bureau. They are going to create an advisory committee and they would like representatives from CYCC, NHFV, representatives from contract agencies, family representatives, and data personnel. This committee would come up with a plan of what services will look like next year, in 3 years, and what the goal would be for services to look like in 5 years. The Bureau would like to spend more of the funds on meeting the unmet needs of families and less on paperwork. They would like to set something up for the middle of June to kick off a conversation. Dee would like at least one person from CYCC if not more. Another option would be for Dee to have 20 to 30 min on CYCC agenda each month to address specific questions related to this work.

Dee will reach out to Audrey and Pam to bring to the Executive Council meetings to see how CYCC could assist with this project. It was asked if new software would be a part of future changes. The answer was maybe but technology is part of the discussion because paperwork especially duplicate paperwork is a problem.

Upcoming meetings

Do we want to have in person meetings? Possible choices are to keep Zoom only, Zoom and in person at the same time, or once or twice per year meet in person but remain on Zoom for the rest of the year. Tabled this part of the discussion

Next meetings: Wednesdays, from 530-730pm.

  1. June 9th
  2. August 4th,
  3. October 6th
  4. December 1st
  5. January (This is our annual meeting. Maybe we will meet in person for this. No date was set.)

Vaccine Letter Collaboration with the Quality Council

Lisa Beaudoin from ABLE NH did some research into what we could do to prevent the inequity around the vaccine distribution in the future and presented at the Quality in March, put a letter together based on the research and the letter was reviewed and tabled due to concern over wording of the letter.

The Emergency Preparedness for the state of NH is woefully inadequate for persons with chronic health conditions and those with disabilities. It is important that we have a lookback at what went wrong, do a systems analysis, facilitated by an agency that are subject matter experts like FEMA’s office of Disability Preparedness. The voices of families and stakeholders in the supports and services of people with disabilities need to be included in this process. With this information we can create and adopt an emergency preparedness plan that is adopted by service providers across the state or have emergency preparedness planning for the disability and chronic medical conditions communities, imbedded within the state emergency plan. It is important for CYCC and Quality Council to insist that BDS and public health service participate in the lookback and planning process going forward. Some of the issues were lack of communication between agencies about vaccine clinics and no list of families that were experiencing barriers to getting a vaccine. We also need real family stories that are not distorted by agencies with other agendas.

Letter is tabled due to wording of the letter and disagreement on how to request agencies to participate in this lookback/planning. The Quality Council does plan to revisit it.

Next steps is to find a draft of the letter and refine what we are asking for. There were too many people making edits and the original intent of the letter was lost. BDS and Public Health Service do not have the expertise on emergency preparedness to facilitate the lookback or planning process. They need to be learning alongside service providers and families at what emergency planning and preparedness look like. It was suggested that CYCC consider getting in touch with the Quality Council and encourage them to begin working on it again or take it on ourselves.

Discussion continued regarding the lack of access to medical supplies during the pandemic in addition to inequity of vaccine distribution and about how emergency preparedness for people with disabilities and chronic medical conditions is an afterthought. There is only one organization in the country that is dealing with this issue. Audrey and Regan will reach out to Germaine to see if he or someone from his organization could meet with us to discuss how to take this issue on.

Action Items

Pam will follow up with phone calls to see what is holding up the nominations of representatives from the Senate and Department of Education.

Pam to send out list of organizations that she will send recruitment letters too once the letter is approved by the Executive council.

Pam will meet with Greenlight on the 11th regarding the website.

Karen will reach out to Pam to discuss the website.

Sylvia requested that Pam and a CYCC parent be a part of the RFP process for the Needs Assessment. Keep Suba from the bureau in mind to be on the Steering committee.

Kristin and Laurie will meet to finalize the Champion Awards.

The executive council should decide how to proceed on Dee’s request that she have CYCC involvement in the Bureau’s Title V review and review of the delivery of services.

Pam confirm that Christa McAuliffe Center will hold our deposit until we are able to host our gala.

Regan and Audrey will reach out to Germaine regarding emergency preparedness