Council for Youths with Chronic Conditions
Zoom meeting 5:30-7:30pm
Attendance (power outages responsible for lower attendance)
Tim Guidish, Regan Lamphier, Laurie Fleming, Karen Livernois, Ellen Bailey, Deodonne Bhattarai, Audrey Gerkin, Stephanie Patrick, Nicole Parker.
Stephanie Patrick, Director of the NH Disability Rights Center (DRC), introduced herself to the council. She informed us of who the DRC is and what they do. She updated us on what they are currently working on. The revised Mission statement and Vision were shared and can be found on their website https://drcnh.org.
The DRC is developing their 5 year Strategic Plan and wants input from the Council. Input can be given through the end of April. The survey link to provide input is https://drcnh.org/uncategorized/strategic-planning-survey-2022-2023/.
Questions regarding DRC services were taken. Discussed the progress that has been made as a result of class action lawsuits and public policy advocacy. Discussed how the DRC refers to NH legal services or the NH Bar if someone needs an attorney.
Input on issues facing the Council was shared.
- IEP/504- health plans not being followed.
- Getting mental health services/ specifically youth with ASD.
- Accessibility barriers in businesses, camps, programs, homeless shelters.
- Finding employment.
- Children with “medical complexity” not formally defined in the law.
- Lack of funding for PIH versus Area Agency.
- Promotion and explanation of what EPSDT is.
Potential future issues discussed.
- What effect will EFA’s have on school districts?
- Workforce shortage.
- Private Duty Nursing.
Secretary’s Report (Kristin Bonny)
Kristin made a motion to approve the January 18, 2023, Meeting Minutes. Laurie Seconded. All were in favor.
Treasurer’s Report (Tim Guidish)
Reorganized the budget to show priorities. Occupancy reduced from $750 to $320. Some Strategic Initiatives funds earmarked to other appropriate categories. Promotions and Events added and funds earmarked to this category to cover tabling events. Web support added and is now $150/month around 1 hr per month and can be billed in 15 min increments if we need more. Web hosting is $100/year. Project balance is as of 12/31/22.
Discussion regarding the category of Promotions and Events, it does not accurately describe what the funds are being used for. Change it to Outreach and Education this is a more accurate description of what the funds are being used for. Tim will make this change. Regan made a motion to approve. Motion seconded. All were in favor.
- Macro Promos, Are you a difference maker? Audrey filled out the application. If chosen we could receive $1000.00 in swag for Education and Outreach.
- Leadership Series sponsorships. Audrey would like the council to nominate and sponsor CYCC members to attend the NH Leadership Series. The Council has done this in the past.
Discussion regarding nomination and sponsorship process.
- Should the Council set up a formal way to nominate and sponsor members? For instance how many people per year or a set dollar amount?
- What line item would this fit under? Outreach and Education?
- Are we limiting our sponsorship to just council members? Would we consider people in the community?
- We have to co sponsor or sponsor the entire amount.
- We could sponsor NH leadership and they would assign the people? We would lose control of who we sent though. We could add caveats regarding who they assign.
- Tim will move $5000 from Strategic Initiatives to the new category of NH Leadership Series (IOD LeadershipTraining).
- Karen will reach out to Sarah at NH Leadership to see if they can present to the Council about ways to sponsor.
- Limit to 3 per year? Each area agency picks a certain number to sponsor each year.
Council approved Kristin for sponsorship. Nicole will wait. Karin will let the council know.
- Greenlight invoice, Audrey discussed miscommunication and additional bills. We will pay the final invoice from Greenlight and First tracks will complete the work.
Membership (Karen Livernois)
- Vacant positions
- NH House Representative- Audrey has reached out to the Speaker of the House several times with no response. Audrey met Heath Howard and he is interested in our organization. Kristin will reach out to Heath Howard to see if he is interested in being the House Rep for our council.
- Department of Education- Kristin is interested in representing this seat. Audrey will submit her name to Commissioner Edelblut.
- Community Organizer- Dee is waiting for reorganization of FCS.
- New Application- Ellen Bailey, Independent Pediatric In Home Nurse, shared about her experience as a nurse working with Children with complex medical needs. She specialized in working with children with CP. She worked in the home setting through Medicaid. Discussion began with reviewing the By-laws- membership criteria. Ellen needs to be affiliated with a community organization and because she is an independent nurse and not part of an organization she doesn’t qualify per our bylaws to become a voting member. Discussion continued around ways to have Ellen be a member. The Council decided at this time to have her be a community member without voting rights.
- Leadership series 3/10 presentation update (Karen L and Karen M)
Lots of great questions after the presentation. They had a good understanding of Chronic Illness and what CYCC is. This will be an annual thing.
- Seacoast Human Resource Assoc (SHRA) rescheduled to 4/11. Audrey and Karen will present. This should generate some donations to the council. Audrey will update the council at our May meeting.
Agency Report (Dee Dunn)
Dee was not in attendance but sent an update for Audrey to share.
- Public Health Emergency coming to an end. They are worried about medicaid coverage for anyone who didn’t do their redetermination. The MCAC spoke a lot about this at their last meeting. They are able to sort through people on the list who might lose coverage and pull out those at the highest risk. They will be given an extension.
- Vernon Clough is a new administrator at DHHS. He is an integral part of private duty nursing.
- Coordination for MCO’s is ongoing.
- ACE Kids ACT grant. Have not received permission to apply for the grant from the commissioner yet.
- RFP sent out for contracts for a more unified system of Family Support and Care Coordination.
- Child development contract approved retroactively.
- 2 year amendments for contracts that will expire before the redesign is initiated.
- Biennial budget coming up this year.
- Reach out to Dee via email with any questions.
Insurance Department Report (Josh Hillman) not here to present.
- HB467 – Playground bill- Passed through committee 10-9 and passed through the House. Going to the Senate. Committee hearing Tuesday, March 21st at 915 in Room 100. People can sign in.
- HB540 – Education Tiered (Deodonne) It has gone to finance and is supposed to be out of House finance tomorrow. Allocates funds to public schools based on a tiered grant system. Students that spend 80% or more of their day in a general education classroom receive less funds than students who spend less than 80% of their day in the general education classroom. Students who are placed out of district receive the most funding. Concerned that this bill promotes segregation of students with disabilities.
Other potential bills:
- HB342 Lead testing in children- positive feedback- should pass. Gail Gettens will present at our May meeting around lead poisoning. She answered questions from our meeting minutes. Audrey will send her responses to us before our May meeting.
- Multiple bills around PFAS- looks like most will not pass.
Emergency Preparedness Audrey attended prep exercise facilitated by FEMA for NH. At the last planning meeting, 3/16/23, Audrey was asked to provide info around things to look out for regarding pediatrics with disabilities in their scenario. Last meeting tomorrow. Emergency scenario happens in April.
Upcoming 2023 Spending Goals
- Champion Awards/mid-July. July 10th is Chronic Disease Day. Hoping to align with Champion Awards with that. The Council decided on Thursday, July 13th for Champion Awards. Audrey will reserve this day with the Christa McAuliffe Museum.
- We will have the PhotoVoice Exhibit at the Family Support Conference.
- Scholarships for kids/Scholarships for Camps Audrey found a couple of websites that list the camps in NH. Audrey asked for suggestions from the council. Some suggestions were;
- Could we use the funds to put together a resource guide to help camps become more inclusive? May not be able to do it this year.
- Create an RFP that asks camps to submit for help in becoming more inclusive..
- Reach out to the DD council too.
We will continue this discussion at a later date.
Other ideas: How can we help linguistic training? Linguistic Ableism How do we want to move forward with this? Internal training and Title V.
* March-May Community Partner for SHRA – Portsmouth Country Club
* Health Educator Gail Gettens on Lead Poisoning at May 17th meeting, Check out her
* July 13th tentative date for Champion Awards/Chronic Health Awareness Month
* August 5-6 Family Support Conference (Tabling & PhotoVoice Gallery) – Manchester We will have a table and can set up our photo voice gallery. We will need volunteers from 8-3pm and the exhibition is from 3-5pm.
*2023 Council Meeting Dates: May 17, Sept 20, and Nov 15
Prepared by Kristin Bonny