Full Council Meeting

Guest presentation

Council Business – Transition plan deliberation and approval

Erica Barnes and Amy Gaviglio presented the high-level structural changes that resulted from the Council move from the University of MN to a state agency. Council participated in discussion on the need for training around open meeting laws and the potential for a change in pace to Council activities. Amy Gaviglio and Erica Barnes will continue to explore options for ensuring activities can continue in between Council meetings while adhering to Open Meeting Law. Sheldon Berkowitz requested that the Council send Dr. Tolar a letter of thanks for his leadership in the first three years of the Council. Dawn Stenstrom requested insights into why the Council decided to move from the University of Minnesota to the Minnesota Council on Disability. Amy Gaviglio responded with information on the Council’s expanded scope that now explicitly allows for work on policy issues.

Karl Nelsen asked whether the Council should have longer meetings or more frequent meetings to assist in keeping activities moving. Sheldon Berkowitz requested that the October meeting be recorded for absent members in reference to open meeting law training. Reference documents for training were provided electronically to members: Minnesota Open Meeting Law Training Video – YouTube and Open Meeting Law Series 1 – YouTube.

Amy Gaviglio presented the transition plan and reviewed the action items that required clarification. Chair and executive committee nominees announced as follows (Council will receive information on nominees and vote at October meeting):

Chair nominees:

• Amy Gaviglio
• David Tilstra

ESC nominees:

• Maureen Alderman
• Rae Blaylark
• Amy Gaviglio
• Barbara Joers
• Karl Nelsen
• Paul Orchard
• David Tilstra

The process for appointing new members was also discussed. While membership is determined by Governor appointment, Council members were encouraged to share information about the Council and its work with potential candidates. Sheldon Berkowitz and Tom Blissenbach announced their intention to complete their current term to October 2022 with Sheldon extending his Council membership for an additional year.

Required updates and revisions needed to the workplan and operational procedures based on the 2022 legislation revisions was then discussed. Abbie Miller proposed that each workgroup revise sections of workplan relevant to them and present at the next full Council meeting. Executive subcommittee to revise the operational procedures and provide updated draft at next Council meeting. Additional staff needed to address the goals and objectives of the Council will be determined by Executive Director with support from the Minnesota Council on Disability and input from workgroups as they meet and clarify their goals.

Action: A motion was made by Amy Gaviglio and seconded by Sheldon Berkowitz to create a policy committee. Motion unanimously passed by roll call vote, with 17 in favor and 4 members absent

Action: A motion was made by Abbie Miller and seconded by Karl Nelsen to approve the transition plan with the following revisions:

• Addition of the clarification that workgroups will revise their section of the workplan and present the revisions at the October full Council meeting
• Addition of a policy committee to the current Council structure to be included in the workplan
• Revised transition plan to be provided to Council members

Motion unanimously passed by roll call vote, with 17 in favor and 4 members absent

Workgroup Updates

Coordination of Care Workgroup: Sheldon Berkowitz provided a summary of Transition of Care roundtable hosted on June 14 by Children’s and Gillette. There were over 500 registrants from 40 states and countries, with 250 attending on the day. Panelists for the roundtable included the following participants: Dr. Wendy Allen- Rhoades, pediatric oncologist at Mayo Clinic; Dr. Nate Chomilo, pediatrician/internist with Park Nicollet and Medical Director for the State of Minnesota Medicaid and MinnesotaCare Programs; Dr. Kurt Elting-Ballard, pediatrician/internist with Allina Health and Medical Director with Allina; Pat Lang, mother of 3 children, one of whom recently died of a rare disease and works at PACER Center; Dr. Nancy Mendelsohn, medical geneticist and Chief Medical Officer with Optum Frontiers Therapies at United Health Group; and Dr. Dave Tilstra, medical geneticist and Community Transformation Officer at CentraCare Healthcare. Direct impacts on the work of the Council cited- make a clinician registry a goal of the Council. Tom Blissenbach asked about the information being made available (video available, summary paper, resource fact sheet can be added to the website). Once the information is finalized and available it will be added to the Council website as a resource.

Barriers to Care Workgroup: Tom Blissenbach gave an update, opened up discussion around participation in the state fair. Multiple Council members voiced concerns around the Council’s readiness, Abbie Miller suggested focus on the medical community before Council focuses on the general public. Dick Schirber suggested we attend on a less official basis to get an idea of what the benefit would be/general fact finding.

By a show of hands, Council majority supported that we explore participating in the State Fair in the future: 15 yes, 1 no, 1 abstain, 4 absent

By a show of hands to determine if the Council should participate this year: 4 voted yes, 13 no, 4 absent

Based on the votes, Tom Blissenbach made a motion to put together a marketing group to work on a state fair plan for 2023 and bring a proposal back to the group in October. Sheldon Berkowitz thinks that we are putting the cart before the horse. What are we trying to accomplish? Amy Gaviglio suggested that fair participation be contingent on a tangible objective with measurable goals/outcomes in which we would like to engage the public (survey participation, etc). By a show of hands to create a marketing group to explore marketing opportunities including potential State Fair participation in 2023: 17 yeses, 4 absent

Due to time constraints updates from the Cost and Acceleration of Research workgroups was deferred to the next full Council meeting.

Public Comment