Newborn Screening Program Joint Advisory Committee (JAC)
ADVISORY BOARD GUIDELINES
Section 1 - The name of this committee shall be The Joint Advisory Committee (JAC) for the Identification and Management of Children with Conditions Detected through the Maine Newborn Bloodspot Screening Program (MNBSP).
Purpose and Authority
Section 1 - The JAC, established in 1993, has the purpose to ensure that the policies and programs offered by the State of Maine Department of Health and Human Services, Center for Disease Control and Prevention, Children with Special Health Needs, Maine Newborn Bloodspot Screening Program (MNBSP), to improve the health and well-being of those individuals identified with certain suspected and confirmed disorders of metabolism, endocrinology hematology, pulmonology and immunology are appropriate and effective.
Section 2 - The Committee has the authority to:
- Recommend rules, regulations, and standards to the State of Maine Health Officer for the detection and management of said disorders. This may include changes to the newborn bloodspot screening panel.
- Recommend policies and procedures for comprehensive follow-up treatment.
- Recommend policies and procedures for the care of families/individuals with false positive screening results.
- Advocate for individuals and families identified with conditions that are or may be identified through Maine Newborn Bloodspot Screening Panel
Section 1 - Representatives from the community, professional organizations and non-profit groups that support health issues of newborns, children and their families may also be included as members. The JAC should be limited to 12-20 members.
Membership on the JAC may include, but not be limited to, voting members from the following groups:
- At least four consumers. Of these four consumers:
- At least three consumer representatives should be a person having one or more family members with a disorder being screened for by the MNBSP or a person living with a disorder being screened for
- Public Health Nursing
- Social Work
- Practicing Pediatrician
- Pediatric Specialists who have expertise in the diseases being screened for or under consideration for screening
- Registered Dietitian
- Medical Ethicist
- Birth Hospital Nurse
- Birth Hospital Quality Assurance Professional
- Genetic Counselor
Section 2 - Suggestions for new members may come from current JAC members or the Department of Health and Human Services. Geographic representation will be considered in making JAC appointments.
Section 3 - Appointments will be made by the Maternal Child Health (MCH) Screening and Follow-up Program Manager.
Section 4 - Members will serve for a four year term. Members may serve consecutive terms at the discretion of the appointing official. New members will begin their term in the January, although vacant positions need not wait to be filled. New members will be provided with an orientation packet and discussion with the JAC Chairperson or MNBSP Coordinator
Section 5 - Responsibilities: It is recognized that each member brings to the Committee unique perspective, skill and knowledge that represent the State of Maine. It is expected that each member actively participate in Committee meetings by providing input on:
- Issues concerning the MNBSP
- Policies and procedures concerning comprehensive treatment
- Educational related issues
- Family needs and other issues as appropriate
Section 6 - Members should participate in all meetings: in person, by teleconference, if necessary, or by submitting written comments.
Section 7 - At the discretion of the Maine CDC-P, members are considered withdrawn after non-participation for two consecutive meetings.
Section 8 - Within four weeks of the fall meeting all current Members are contacted by the MNBSP Coordinator and/or Co-Chairs to confirm continuing membership on the committee
Section 9 - The MNBSP Coordinator will notify members of vacancies in membership and solicit recommendations for new members by November 30th.
Section 1 - Chairpersons: The Chairpersons of the JAC shall serve for a two-year term. Whenever possible, Chairpersons serve on a rotation basis. The Co-Chairs will be selected from member volunteers and affirmed by the membership and the Maine CDC-P.
Section 2 - Responsibilities of the Chairpersons include, but may not be limited to:
- Presiding over meetings
- Determining the agenda in collaboration with the MNBSP Coordinator and the MCH Screening and Follow-up Program Manager.
- Responsible for facilitating consensus or a vote when necessary, on recommendations to the MNBSP
Section 3 - Program Staff will provide support to the Chairpersons as needed by:
- Distributing agenda and materials
- Arranging meeting location and specific needs based on agenda
- Providing program perspective to discussions
- Recording and distributing minutes
Section 4 - Co- Chairs will act as facilitators at meetings.
Section 1 - Regular in person meetings of the JAC shall be held two times per year.
Section 2 - The Co-Chairs shall, in consultation with the MNBSP have authority to convene meetings outside the regular meeting schedule for the purpose of conducting special sessions that are deemed necessary.
Section 3 - JAC meetings are open to the public. Notice of meetings will be provided on the program web site (in development) and through provider clinics and/or interested parties list.
Section 4 - Non-members will not have any voting privileges but may provide input and/or comment when recognized by the chairpersons. Non-members shall be excused during discussions of a confidential nature, such as review of a specific case record.
Decision-Making and Voting
Section 1 - The issue being discussed will determine decision-making process. The question or statement of the issue needing a decision or action will be clear and specific.
Section 2 - As appropriate, the Committee will strive for consensus or modified consensus. Members shall indicate their response in visual manner or verbally. If consensus is not reached a vote may be called.
Section 3 - The majority of members present at the meeting shall determine all questions.
Section 4 - For policy recommendations, three quarters of voting membership shall be required for a quorum. In the event that there are less than three-quarters of members present, decisions/recommendations will be tabled pending input or voting of absent members. Such input or voting may occur following the meeting by phone or electronically to Co-Chairs or MNBSP Coordinator.
Section 5 - Maine CDC-P Directors and Program Staff are not voting members of the Committee. The Maine CDC-P Medical Director, a representative of the CSHN Program and the MNBSP should be present to give Maine CDC-P and Program perspectives.
Section 6 - JAC recommendations shall be presented by MNBSP Coordinator to the MCH Screening and Follow-up Manager, MCH Program Director. Co-Chairs and JAC committee members may be included in these discussions as needed.
Section 7 - The final decision for program policies and activities resides within the Department of Health & Human Services, Maine CDC-P administration.
Section 1 - Ad Hoc Committees - Any committee temporarily needed to carry out activities may be convened at the discretion of the Co-Chairs at the recommendation of the JAC or the Maine CDC-P. Examples of such activities include; review of policies, collection of information, formulation of materials etc. Such committees shall cease to exist at the completion of the stated purpose.
Section 2 - It is anticipated that the need may arise to include members of other disciplines to accomplish the goals of the committee; therefore non-voting members may be invited to participate in meetings, activities and/or to provide input to the JAC.
Section 1 - These guidelines will be reviewed at the first meeting of the calendar year.
Section 2 - Guidelines may be amended after discussion and with approval of the membership and Department of Health & Human Services, Maine CDC-P.
Advisory Board Members
- Caroline Bowman, MS, RD, LD (Co-Chair)
MMP Pediatric Specialty Care Genetics
- Thomas Brewster, MD
Retired Metabolic Specialist
- Laurie Brooks (Co-Chair)
- Ana Cairns, MD
MMP Pediatric Specialty Care Pulmonology
- Ivan Cardona, MD
Asthma and Allergy Associates
- Meghan Dumas, MS, CGC
MMP Pediatric Specialty Care Genetics
- Mary Ann Gordon
- Nola Metcalf, RNC, Obstetrical Nurse
Pen Bay Medical Center
- Jerrold Olshan, MD
MMP Pediatric Specialty Care Endocrinology
- Chris Pezzullo, DO
State Health Officer
- Ashley Ryan, RN
EMMC Specialty Clinic Coordinator
- Abby Rogers, Director of Advocacy and Government Affairs
March of Dimes
- Connie Roy
- Wendy Smith, MD
Pediatric Metabolic Specialist
MMP Pediatric Specialty Care Genetics
- Daniel B. Sobel, MD
- Kelly Wheeler RN, MSN, CLC
Birthing Center Nurse Manager
Redington Fairview General Hospital
- Melissa Whitcomb