Attendance: Audrey Gerkin, Tim Guidish, Deodonne Bhattarai, Kate Bailey, Joshua Hilliard, Betty Gay, Deirdre Dunn Tierney, Sylvia Pelletier, Leah Stagnone, Karen Mortimer, Karen Livernois, Ann Marie Van De Water, Nicole Parker, Kristin Bonny
Invited Guests Adriana Lopera, Alyssa Carlisle, Tatianna Hill, and Katie Robert from JSI/CHI. Linda Bimbo from the IOD
JSI/CHI Needs Assessment summary: Invited Guest Speaker Adriana Lopera and her team shared a summary of the JSI process for the Needs Assessment. Adriana began by giving us a history of JSI and what they specialize in. She then shared an overview of the process.
Currently, JSI is at step 1 of the process. Based on conversations with the CYCC advisory group JSI has come up with four research objectives.
- Contextualize the financial impact that families face in caring for a child with a chronic condition.
- Understand the wholistic impact of managing a youth’s chronic condition on the whole family
- Describe the problems/challenges but also strengths and supports of the current continuum of care. (What does the family need to successfully manage and thrive).
- Identify communities with greater need and the unique challenges that they face.
The Pandemic, schools, and the whole family will be considered throughout the 4 objectives.
Adriana gave examples of how each objective might be addressed in each data collection activity. They hope to have 10 focus groups of 10 families, and 16 families for the photo voices. The survey goal number will be determined based on the secondary data review and input from the council.
Next steps in the process.
- Working on IRB approval.
- Develop the survey.
- Continue exploring secondary data sources.
- Keep us informed.
JSI will meet with the CYCC advisory group monthly and will periodically check in with the council. Adriana’s email Adraina_Lopera@jsi.com for questions, input etc. Adriana will share her slide presentation with the council.
Institute of Disability (IOD) Covid-19 Vaccine Summary Report: Invited Guest Speaker Linda Bimbo from the Institute of Disability (IOD) shared a summary of their Covid-19 Vaccine Report. Linda began with a history of the IOD, who they are and what they do. Linda will email the final report to Audrey as soon as it is available. If you want to get on the IOD mailing list email Linda.Bimbo@unh.edu.
The IOD gathered information around access and barriers to Covid 19 vaccinations. They conducted focus groups asking the following questions.
- Did you have problems when you got your vaccine or did you have any problems trying to help someone get a vaccine?
- If recommended by the CDC or NHDHHS would you receive your booster?
- If not, what are the reasons why you would not get a vaccine or booster?
They had a low number of participants. Some key concerns discussed were getting vaccines in a timely manner for individuals and family members who were also care providers. They also conducted a survey with Area Agencies. Some of the barriers identified were concerns over safety of the vaccine, thinking Covid wasn’t a threat, and that the vaccine didn’t work. Linda then shared what recommendations were made as a result of the survey.
Discussion began with questions regarding feedback from participants in regards to School Support personnel being considered as caregivers, lack of medical support for medical reactions at vaccine sites, lack of education of medical providers in regards to the vaccine and misinformation. It was acknowledged that the above concerns were not addressed in the survey and that we (the CYCC and who we represent) were not represented in this survey. Linda will check into opportunities for us to contribute. She suggested that we answer the 3 focus group questions and submit our answers to her. She further suggested that we could discuss what would be the best way to use funds, should they become available, to address some of these concerns. We should send our suggestions to her.
Other concerns that we discussed were.
- There is not one source that has the most up to date and accurate information to help families advocate for their children around the vaccine. NH DHHS, the Bureau of Developmental Services and, nationally, the Association of University Centers on Disabilities are some resources. A website like this could be a recommendation for potential funds that become available.
- Unequal access to information and the fact sheet that we tried to put together for the public based on our conversation with Dr. Ballard. Linda asked Audrey to share the letter/fact sheet with her.
- The state is not utilizing the CYCC as a resource. For instance we weren’t included in the IOD survey. It was pointed out that the Council is becoming more visible.
It was suggested that we could be the voice to provide accurate information that is equal and usable to everybody. Our website is not ready to be that resource yet. Audrey could add a link to the CDC and the state of NH sites related to Covid.
Finally, we discussed how children with chronic conditions may be more at risk depending on diagnosis. Clarification on immunodeficiency was shared. It was recommended that Jan McGonagle talk to us regarding who is more at risk for Covid. Her contact information is email@example.com .
Secretary Report – Meeting Minutes from October 6, 2021 (Kristin Bonny)
Council reviewed minutes, no changes were recommended. Kristin made a motion to accept the meeting minutes. Tim seconded. All were in favor.
Treasurer’s Report (Tim Guidish)
We are under budget at this point. There is a new process for parent payment forms so that isn’t shown here. The Project/Initiatives balance, $62,572 is for Needs Assessment that may go higher with $22,708 available for the website. We also have money in the special projects budget if needed. Audrey will send out the new Parent Payment form. She will fill out the meeting information for us. We need to sign them and scan them back to Audrey.
Membership (Audrey Gerkin)
Audrey will contact the NH Senate and the DOE again, to get representatives for the council.
Dee sent out an email for the Community Based Director. Audrey will discuss with Leah about her role as Youth member vs Member with a chronic condition.
Annual Election Nominations
- Karen nominated Kristin Bonny for Secretary and Tim Guidish for Treasurer. Tim seconded Kristin and Deodonne seconded Tim.
- Ann Marie nominated Karen Livernois for Council Chair. Kristin seconded.
- Karen nominated Deodonne for Vice Chair. Ann Marie seconded.
Dee gave an update on the Bureau redesign. Some concerns identified were duplication of services, budget reductions, and workforce issues.
At her last meeting with the stakeholder group they went through a series of 6 questions outlined in the Standards of Care Coordination. Dee will send those 6 questions to us via Survey Monkey for our input.
The Bureau is looking to implement the redesign in July of 2023.
The Council should let Dee know what types of information or data we would like for her to share with us in the future.
Some suggestions for data collection, information needed were.
- Adequacy or inadequacy of insurance for families of children with special healthcare needs.
- Referrals for children with NAS.
- Identify families where there is only one family caregiver and the youth will not be able to take over their own medical care when that caregiver is no longer able to care for them. A plan for care coordination needs to be in place before they age out at 21.
- Slyvia will share this info with Dee.
As a Council, we should think about what is the data we want to collect, for example if we are putting together fact sheets, etc.
The discussion ended with the application process for home modifications and difficulty getting 3 bids. There is a waiver form on the SMS page on the DHHS website. Audrey will post it to our website.
Annual Report Update
The report is almost complete. Audrey is hoping to get some more feedback before sending out for a vote.
We reviewed the breakdown comparisons of the three proposals.
Discussion focused on the fact that Greenlight and Loud Canvas both propose to use the Userway widget to address our accessibility needs versus First Tracks who will build in the accessibility functions. One concern is that the Userway widget has to be added by the user and could override any preset accessibility features on their end.
Discussion continued on other aspects of the proposals. Greenlight has been difficult to communicate with. Loud Canvas has a $250/month service fee that required a 24mos contract which was a concern. Finally, Audrey has only been allowed to talk to the Marketing person at Loud Canvas, not the developer.
First Track will build accessibility features into our website. Technical support services are listed at $330.00/month but they will work with us for a lower price. Any technical support provided will come with a video tutorial that we can archive for future needs. First Tracks has experience with built in accessibility features. The DRC used First Tracks for their web design and they are happy with their work. They have been very responsive with Audrey so far and DRC has found them to be responsive as well.
Logo Design discussion. First Tracks said they may be able to work with our current logo making minor changes. Audrey also has a contact that might be able to redesign the logo. Nothing was decided, we will continue to discuss.
Audrey moved to vote for which proposal we wanted to accept. First Tracks was voted on first. All were in favor. The First Tracks proposal was accepted. Audrey will reach out to Matt at First Tracks to let him know.
Group Photo for the Annual Report and Meeting Adjourned.
- The council could discuss how to use probable new funding for Covid education and accessibility of the vaccine and send our thoughts to Linda Bimbo.
- The council should answer the 3 focus group questions that the IOD asked their focus groups and submit our answers to Linda.
- Audrey to share the Council’s letter/fact sheet regarding family and school caregivers being a priority group to Linda Bimbo.
- Audrey will add a link to the CDC and the state of NH sites related to Covid to our website and children over 5 now being eligible.
- It was recommended that Jan McGonagle talk to us regarding who is more at risk for Covid.
- Audrey will send out the new Parent Payment form.
- As a Council, we should think about what is the data we want from the Bureau and let Dee know.
- Audrey will post on our website, a link to the waiver request form located on the SMS page of the DHHS website.
- Audrey will notify Matt at First Tracks that we would accept his proposal.
Upcoming CYCC meetings:
Jan 19 5:30-7:30pm Annual Meeting
Meeting dates for all of 2022 announced at Annual Meeting