Council for Youths with Chronic Conditions
January 18 2023
Zoom meeting 5:30-7:30pm
Audrey Gerkin, Deodonne Bhattarai, Karen Livernois, Laurie Fleming, Tim Guidish, Sylvia Pelletier, Dee Dunn-Tierney, Josh Hilliard, Karin Mortimer, Regan Lamphier, Betty Gay, Amy Mahoney, Leah Stagnone, Rebecca Whitley, Nicole Parker, Kristin Bonny.
Amy Mahoney – Executive Director for Epilepsy Foundation of New England, introduced herself to the Council. She discussed her non-profit the Laura Foundation and her personal experiences as a mother of a child with a chronic condition. The Council members present then introduced themselves to Amy.
Secretary’s Report (Kristin Bonny)
Corrections made to the November meeting minutes. Motion made to approve the amended meeting minutes. Amended November Meeting Minutes approved.
Treasurer’s Report (Tim Guidish)
Parent stipend protocol improved. Audrey went back 6 months and was able to submit the paperwork for parent members.
Occupancy space charges changed from $750.00 to $320.00. This is for Zoom and email and phone. Storage is available at Community Partners according to Sue. Audrey will check that this is also included in the new price.
Tim will update the following line items;
- Office Supplies and printing
- Marketing and promotions
- Champion Children
- Web support
Regan made a motion to approve the budget, Laurie seconded. All were in favor.
Audrey updated the council regarding incoming and outgoing funds.
- NHCYCC will present to the Seacoast Human Resources Association in the Spring at the Portsmouth Country Club. They awarded CYCC $250.00 in the past.
- Estimate for printing of Needs Assessment is $1065.00 for 50 copies. These will be for tabling events and to give to those that are truly interested. Audrey also shared a one page summary. A QR code will be added to link to the whole report. Several minor changes were requested by the council. Audrey will have it amended.
- Lighting the Path Difference Makers Awards is a potential new input of funds for the council to use. The Council can apply for funds to use to purchase swag. Audrey will look into this. Audrey showed what she has purchased so far. 10 easels for the photo voices pictures were also purchased.
Upcoming events that we will be a part of;
- The Family Support Conference will be in August, in Manchester.
- Champion Awards and Chronic Health Proclamation Awareness are in July.
Membership (Karen Livernois)
Current Term Limits reviewed.
We still have room for more parents- Dee will promote with the new combined PIH/Care Coordination program that each of the 10 regional PIH Family Councils identify someone to join the council.
Open positions on the Council are
- NH House Representative
- Department of Education representative. Dee is waiting for the new Special Education Coordinator from the DOE to be appointed before making an ask.
- Community Based Agency Representative. Contracts are changing in June. Waiting until the new contracts are in place to recruit one of the new directors.
- Professional and Community Organizations. We have several members representing various organizations. Dr Sashi remains on in a consulting capacity only, not as a council member.
Annual Elections for the Executive Committee. Current Executive Committee members have volunteered to remain in their positions. No other members have requested a position on the Executive Committee.
Nominations for Executive Committee.
Regan nominated the following members to remain on the Executive Committee.
- Karen Livernois to remain as chair, Deodonne seconded.
- Deodonne Bhattarai to remain as vice chair, Tim seconded.
- Tim Guidish to remain as treasurer, Deodonne seconded.
- Kristin Bonny to remain as Secretary, Karin Seconded.
The nominations were approved by the council.
Agency Report (Dee Dunn)
Quality Improvement Project update.
The RFP is almost ready to be released. They are moving into a transition phase and starting to meet with PIH and Health Care Coordinators together to prepare them in each other’s roles. The overall amount of money for contracts is increasing. These improvements should reduce duplication of services and steps that families have to take to get services. It will also reduce some of the administration burden for agencies and families. The goal is to be ready by July 1, 2023.
BFCS is also working to establish a nurse consultation program. Three Healthcare Coordinator positions at the state office were reclassified to Nurse Consultants and a Clinical Program Manager was hired.
Dee and Audrey met regarding Medicaid Home Health Initiative Planning Grant (from the ACE Kids Act). This is an opportunity for states to have a Home Health State Plan amendment. This would provide comprehensive healthcare coordination for children with medical complexity. It already exists for adults. They are proposing to apply for the planning grant and hire a consultant to help. Dee has met with the commissioner to get approval. The deadline is October 1, 2023. The grant has a 1:1 match. They are looking to identify some foundations to help with the match.
Insurance Department Report (Josh Hilliard)
LSR for the Formula/Nutrition bill has been withdrawn. Another senator is working on a new LSR that is broader in scope. The council should let Josh know if we have any bills that we are interested in.
Formula/Nutrition bill. Audrey will meet with the RARE Advisory Council and hopefully will have more information after the meeting. Audrey also met with NORD regarding this bill. Senator Rosenwald filed the bill.
New bill in the House regarding accessibility of playgrounds. All publicly paid for playgrounds built after January 2024 need wood or rubber surfacing to be more accessible. Had not come to hearing at the time of this meeting.
Other potential bills:
CYCC is being included in the Disability Round Table meetings. CSNI runs the meeting to discuss bills that would be relevant to our disability organizations. HB 254/308- regarding Remote Access to hearings, are bills we might want to support. These bills would allow for people to attend hearings remotely. One of the bills needs to be amended first to make it better for all stakeholders. Representative Simpson will officially announce the amendment at the hearing and then we may sign the letter if we want to support it.
HB342 Lead testing in children. This bill mandates that preschool and public school children must be tested for lead before admittance.
Discussion: This was discussed last year in the NH House. Is it too late when the child is entering Preschool or public school? They discussed that it would be better to get mobile units to go to communities to do the testing earlier.
- Is it required during annual physicals in NH like in MA?
- Are children on WIC still tested regularly?
- What happens after a family is notified of lead exposure? What services and supports do they receive?
- How can the council help?
Dee will follow up with Audrey about having someone from the Lead Program come to one of our meetings. www.dhhs.nh.gov/programs-services/environmental-health-and-you/lead-poisoning-prevention-program
HB282 expanded CHiP/Medicaid coverage,
Josh will look into this and report back to the council.
Multiple bills around PFOAs. Childhood cancers are linked to exposure so it falls under our umbrella. Karen is following this issue and the bills that are on the table.
Emergency Preparedness Audrey attended prep exercise facilitated by FEMA for NH. Next meeting 2/15/23. Our voice was heard. They are taking children with disabilities into account for their crisis exercise.
Upcoming 2023 Spending Goals
$20,000 left to spend.
○ Champion Awards/mid-July Chronic Health Awareness Month-Proclamation
The council agreed to hold the awards ceremony at the Christa McAulliffe Museum. Audrey will reserve the date.
○ Scholarships for kids/Scholarships for Camps
Adam’s camp is not holding camp because of an increase in cost that they did not want to pass on to parents. Is this something the council could assist with as it is one of NH’s only adaptive camps?
Discussion: Concerned that it is a duplication to PIH campership funds. Deodonne will send Dee the camp director’s contact info. CYCC has donated to camps in the past to help kids go to camp. Clarification was given that funding families is a duplication. Suggestions of how the council might help:
- The council could support camps instead.
- Add a blog to our website with links to each of the camps for children with chronic medical conditions and disabilities.
- Reach out to typical camps that have out of date policies to see if we could help them be more accessible.
- Find camps that are trying to include all but may need assistance.
- Connect camps that are inclusive/accessible with camps that are trying to be.
- Look to highlight organizations that are doing a good job with inclusivity like Champion Childrens.
- Offer grants to camps.
* Thursday February 2 12-1:30pm : State House Meet and Greet with NH Disability
Organizations/Tabling opportunity – 3 volunteers needed. They are asking for $500.00 to help with food and postcards. Council approved $500.00. Let Audrey know if you want a postcard.
* March 10 10:15am Leadership Series Presentation of CYCC. Karen and Leah were invited to present. If anyone is interested in helping present let Karen know.
* July TBD Champion Awards/Chronic Health Awareness Month Champion Childrens- the council agreed to hold the awards ceremony at the Christa McAulliffe.
* August 5-6 Family Support Conference in Manchester. It is a $500.00 fee for us to have a table. Volunteers will be needed.
*Seacoast Human Resource group in the spring.
*Disability Policy Seminar- where or when? Can’t even register.
Audrey will meet with Megan from PA and Angela in MA. They are looking to put together a National Coalition with parents and professionals around private duty nursing. They met with Little Lobbyists in December and will continue the conversation with them.
Audrey shared her acceptance into the Arc’s Paul Marchand Fellowship for the Arc’s National Office. They are working on the Better Care Better Jobs Act.
The Council voted to accept Amy Mahoney as a Council Member. All present were in favor.
2023 Council Meeting Dates: Jan 18, March 15, May 17, Sept 20, and Nov 15
Prepared by Kristin Bonny