NYS SICKLE CELL ADVISORY COMMITTEE (SCAC)
BY-LAWS
ARTICLE 1 - NAME AND OFFICES
SECTION 1
NAME
The name of this organization shall be the Sickle Cell advisory Committee of New York State, herein called SCAC.
SECTION 2
OFFICES
There will be no designated offices for SCAC. Meeting dates of SCAC will be determined by SCAC and its Executive Committee Chairs. Correspondence will be received in a P.O. Box arranged through the officers.
ARTICLE II - MISSION, PURPOSE AND FUNCTION
SECTION I
Mission
The mission of SCAC is to deliberate matters pertaining to sickle and other hemoglobinopathies for the purpose of policy making, problem sharing/solving, voicing of concerns, providing education, and presenting accomplishments with the knowledge that effective communication can be mutually beneficial and may result in legislative, professional, systemic, programmatic, and societal changes.
SECTION 2
Purpose
The overall goal of the SCAC is to improve the delivery of quality health care & other services for individuals affected by sickle and other hemoglobinopathies.
SECTION 3
Function
The functions of the SCAC shall include, but are not limited to:
A. Providing a network of community organizations, health care providers, and individuals concerned with sickle hemoglobinopathies to work collaboratively to achieve the purposes of SCAC.
B. Assessing needs related to sickle hemoglobinopathies, through the membership, standing committees and other relevant agencies.
C. Conducting health promotion/education activities among consumers, patients and their families, providers and the public at large in the targeted areas.
D. Educating of providers and public officials in relation to sickle hemoglobinopathy needs and problems, in the targeted areas, as well as to the latest research in the field.
E. Advising GENES (Genetics Network of the Empire State), and state, local and federal agencies on matters pertaining to sickle hemoglobinopathies.
F. Assigning representatives to serve as delegates or representatives of SCAC on other committees/organization as necessary.
ARTICLE III- MEMBERSHIP
SECTION 1
SCAC Membership
A. Membership in the SCAC shall be composed of health care providers, members of community organizations, individuals with sickle hemoglobinopathies and their families, consumers from all regions of New York State, and representatives from the New York State Department of Health and other government agencies who have an interest in hemoglobinopathies.
The healthcare providers may be hospital and/or community based. They include among others physicians, nurses, genetic counselors, social workers, health educators, and health administrators. The consumer representation reflects organized self-help and support groups, as well as individuals who have sickle cell hemoglobinopathies, their family members and other interested persons. The community organizations can be those devoted exclusively to sickle cell or to other relevant facets of health care, including genetics, as well as other general community interest groups.
B. SCAC membership can be by individual or agency representation, and stipulation as to which should be made to the Secretary/Treasurer.
SECTION 2
Standing Sub-committee Membership
A. Standing sub-Committee Chairs will be appointed by the Chair and Co- chair at the start of each term of office. Members of the Standing Sub- Committees will be appointed, and removed for cause at the discretion of the Standing Committee Chair.
B. Each SCAC member is required to select and become active in at least one standing sub-committee. Composition and membership of each sub-committee is at the discretion of the Sub-Committee Chair.
C. Sub-committee Chairs will report sub-committee activities directly to the SCAC chair and these activities shall be subject to the approval of the Chair. Any disagreement between a sub-committee chair and the SCAC chair on any issue shall be mediated by the executive committee and resolved by a majority vote of that committee. All disputes will be reviewed at the next regular meeting of SCAC.
SECTION 3
EXECUTIVE COMMITTEE MEMBERSHIP
The Executive Committee shall consist of the SCAC officers, SCAC Standing Committee Chairs, Metro New York Sickle Cell Coordinator, New York State Sickle Cell Coordinator, a minimum of two consumers, and additional categories of members as deemed appropriate by the SCAC.
SECTION 4
SCAC EXECUTIVE COMMITTEE ELECTIONS AND TERMS OF OFFICE
A. Elections
Elections will be held every two years by the SCAC membership. Beginning in 1992, and occurring on every even year. Elections will be held at the SCAC meeting held prior to the September meeting. Elections will be by simple majority.
B. Terms of office
The new term of office for SCAC officers will begin in September, and shall be for two years.
C. Agency Representation
In those cases where an elected officer represents an agency, no other representative of that agency may be elected during the same term.
Agencies are encouraged to appoint at least one alternate to be its representative to attend SCAC meetings so that they agency always has representation. The agency is responsible for notifying the SCAC Secretary/Treasure, in writing, of the alternate designees. Any number of agency/groups can attend SCAC meetings.
SECTION 5
Procedure
A. Quorum
For voting purposes, at least 25 members of SCAC must be present at a regularly scheduled meeting.
B. Voting Privileges
Any member of SCAC can vote except for employees of NYS agencies and Health Research, Inc..
C. Amendments to By-Laws
Any member may propose amendments to the by-laws, which then must be approved by 2/3 of those present at a regularly scheduled meeting.
ARTICLE IV - OFFICERS
SCAC OFFICERS
SCAC shall have the following officers; Chairperson, Co-chairperson, and Secretary/Treasurer. No N.Y. State Public Officer can be a SCAC Officer. The officers will be elected by the SCAC membership. The term of the officers will be two years. All officers shall serve without compensation.]
A. Chairperson/Co-chairperson
The Chairperson and Co-chairperson will rotate moderating all SCAC and Executive Committee meetings.
B. SecretaryTreasurer
The Secretary/Treasurer will assist in compiling minutes, arranging meetings, and reviewing SCAC budgets and financial matters.
ARTICLE V - COMMITTEES
SECTION 1
EXECUTIVE COMMITTEE
The function of the Executive Committee is to plan programs for the year, establish policy for presentation to SCAC membership, and review activities of the sanding committees.
SECTION 2
STANDING COMMITTEES (listed in alphabetical order)
DATA COMMITTEE
This committee is responsible for collecting, cataloguing and analyzing data of all types, and for determining additional data that is needed.
FAMILY/CONSUMER COMMITTEE
This committee is composed of patients, their families and caregivers. It represents the interests of patients to other agencies through the medium of SCAC, thus serving as a patient advocate. The committee members promote patient education and counseling on academic and health concerns by providing speakers and referring to appropriate counselors. This committee is a strong link between SCAC and support groups throughout the GENES region, nationally and internationally. The committee promotes and encourages membership in SCAC.
GENETIC COUNSELING/EDUCATION COMMITTEE
This committee is responsible for issues related to genetic counseling for sickle hemoglobinopathies for trait and disease. It is pivotal in suggesting, producing and critiquing polices and educational material utilized by genetic and sickle cell counselors, as well as collecting and reviewing print and audio/video literature for lay persons and medical professionals.
LABORATORY COMMITTEE
This committee considers matters pertaining to type and timing of testing for sickle cell and sickle related conditions. Discussions encompass matters related to quality assurance, accessibility and confidentiality of results.
LEGISLATIVE COMMITTEE
This committee serves as an information source to state and territorial legislators regarding sickle cell concerns, and to SCAC regarding legislative initiatives and proposals of relevance to the sickle cell community. It collects and reviews pending legislation for submission to SCAC as a whole and serves as liaison to legislators for the purpose of recommending and educating for desired legislation.
PATIENT CARE COMMITTEE
This committee is responsible for reviewing and advising on clinical matters/recommendations pertaining to individuals with sickle cell disease of all ages, but is especially concerned with affected infants and newborn screening issues. It is also concerned about methods for developing effective interdisciplinary advocacy networks for children and adults.