CHILDREN AND YOUTH WITH SPECIAL
HEALTH NEEDS PARENT WORKGROUP
WORKGROUP CHARGE AND OPERATING GUIDELINES
I.
PURPOSE
The Minnesota Department of Health’s (MDH) Children and Youth Special Health Needs (CYSHN)
Parent Workgroup represents the CYSHN population to identify gaps, assess services available to
families, and determine next steps for action in better meeting the needs of Minnesota families.
The workgroup acts as an advisory resource to the CYSHN program and provides meaning input
on program policies and activities. The workgroup will:
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
II.
Maintain and promote improved relationships between families of CYSHN and
CYSHN program staff.
Provide a vehicle for communication between families of children with special
health needs and MDH.
Provide an opportunity for families of CYSHN to relay information and feedback
from community members and organizations on CYSHN priorities and initiatives.
Provide a venue for families to provide input into policy and program development.
Provide an opportunity for families to actively participate in the development of
new programs.
Review and provide feedback on policies, procedures, reports, and other MDH
CYSHN programmatic materials.
Provide education and training that fosters an increased understanding of the needs
and concerns of families of CYSHN.
Invest in building leadership skills of families of CYSHN by 1) facilitating the
development of advocacy skills in parents, and 2) encouraging families to participate
in policy / decision-making bodies.
Report and make recommendations to the MDH Maternal and Child Health (MCH)
Advisory Task Force on issues and priorities on topics impacting CYSHN and their
families.
Promote meaningful parent partnerships in program and policy development,
implementation and evaluation, and decision-making at all levels.
AUTHORITY
The CYSHN Parent Workgroup is convened by and reports to the MCH Advisory Task Force,
which was created by the Minnesota Legislature in 1982 to advise the Commissioner of Health
on health care services/needs of the maternal and child health populations in Minnesota,
including CYSHN.
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CYSHN Parent Workgroup Charge and Operating Guidelines
III.
MEMBERSHIP
The CYSHN Parent Workgroup is comprised of 8-10 parents/caregivers of a child with a special
health need, especially those with extensive experience with children who are recipients of
health services. Members are chosen based on an application process composed of a number of
criteria, including:
A.
B.
C.
D.
Interest in serving as an advisor to the CYSHN program.
Comfort speaking in a group with candor and tact.
Ability to see beyond their own personal experiences.
Ability to share insights and information about their experiences in a way that others
can learn from.
E. Ability to show concern for more than one issue.
F. Ability to listen well, respect the perspectives of others, and interact well with a variety
of people.
G. Ability to work in partnership with others.
The workgroup strives to reflect the cultural, racial, linguistic, and geographic diversity of the
population of CYSHN in Minnesota.
The Workgroup should not be seen as a place where an individual workgroup member brings
their personal grievances about CYSHN system of care experiences to be dealt with and solved.
Personal experiences should be used as examples in discussion. Workgroup members should
also bring experiences and perceptions of other families to the discussion.
Workgroup members agree to serve on the Workgroup for a term of two years. Members are
allowed to renew their membership for the Workgroup upon completion of their term, and are
allowed to participate in the group for a maximum of four terms. Upon completion of the four
terms, members shall take off one year, and then are allowed to reapply to the Workgroup.
Applications will be accepted for the Workgroup on an ongoing basis and positions will be filled
if the number of members in the Workgroup reaches less than eight.
IV.
MEETINGS
The CYSHN Stakeholder Workgroup meets bi-monthly (six times per year). Meetings will be held
mostly in person, with conference call and/or webinar options available.
V.
RESPONSIBILITIES
Member Responsibilities
Workgroup members will:
A. Attend and actively participate in at least 75% of Workgroup meetings in person or by
phone.
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CYSHN Parent Workgroup Charge and Operating Guidelines
B. Develop an annual CYSHN Parent Workgroup Work Plan, which includes group goals and
objectives.
C. If unable to attend a meeting, arrange to learn what happened in his/her absence.
Because of the structure and dynamics of the Workgroup, members are not allowed to
send an alternate in his/her place.
D. Review all materials provided for the CYSHN Parent Workgroup, including agendas,
meeting minutes, and work plans, to assure that family/consumer concerns are included
and prioritized appropriately.
E. Represent the CYSHN Parent Workgroup on subgroups, committees, other advisory
groups, as needed/requested.
F. Act as a liaison between CYSHN and their families in the community and the Workgroup,
including informing families of CYSHN of Workgroup activities, actions, and issues.
G. Seek out community input and respond to issues identified by the CYSHN Parent
Workgroup.
H. Actively contribute in CYSHN program and policy development, implementation, and
evaluation to ensure that programs are culturally responsive and meet the needs of
CYSHN and their families.
I. Actively participate in the development of training materials and provide trainings on
needs and concerns of families of CYSHN.
J. Assure that family perspective is adequately reflected in all Parent Workgroup
discussions and documents produced.
K. Respond to communications, requests for information, or feedback from MDH on a
timely basis.
L. Refrain from writing letters or engaging in other kinds of communication in the name of
the CYSHN Parent Workgroup, unless specifically authorized and agreed upon by the
group.
M. Submit invoices for work on a quarterly basis at minimum.
MDH CYSHN Staff Representative Responsibilities
The MDH CYSHN Staff Member assigned to the CYSHN Parent Workgroup will:
A. Serve as a staff liaison between MDH CYSHN Program and CYSHN Parent Workgroup.
B. Ensure MDH CYSHN Program activities and initiatives are communicated with
Workgroup.
C. Ensure CYSHN Parent Workgroup is included in CYSHN program and policy
development, implementation, and evaluation.
D. Facilitate scheduling and logistics of meetings, including finding a meeting location.
E. Work together with CYSHN Parent Workgroup Chair to set agenda for meetings.
F. Write Annual Plan Agreements and ensure invoices are processed.
VI.
OFFICERS
The officers of the CYSHN Parent Workgroup shall consist of a chair(s) and a secretary. Officers
will serve a two-year term, and may remain in the position up to four years.
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CYSHN Parent Workgroup Charge and Operating Guidelines
Chair(s)
The chair will work closely with the MDH CYSHN Staff Representative and the CYSHN Parent
Workgroup Secretary, and is expected to:
A. Convene and facilitate meetings.
B. Work with CYSHN staff to set and prioritize agenda.
C. Ensure the Parent Workgroup follows the group agreements, group work plan, and the
responsibilities set forth in the “Workgroup Charge and Operating Guidelines.”
D. Work closely with CYSHN staff between meetings, as needed.
E. Participate in leadership training, coaching, and mentoring, as needed.
F. Participate or assign facilitators responsibilities as necessary for projects, subgroups, or
ad hoc groups.
Secretary
The Secretary will work closely with the MDH CYSHN Staff Representative and the Workgroup
Chair, and is expected to:
A. Take notes at each CYSHN Parent Workgroup meeting
B. Distribute notes electronically to Workgroup members after each meeting
Nominations
Officers will be elected by a nomination process during January of each year, or when a position
becomes vacant. Workgroup members may nominate themselves or other members. If more
than one nomination is received for each officer position, Workgroup members will vote for
officers via a silent, paper ballot.
VII.
REIMBURSEMENT
Reimbursement for time and mileage is available for Workgroup members. Workgroup
members will submit invoices at a minimum of a quarterly basis. Reimbursement to workgroup
members should be made in a timely manner.
VIII.
DECISION-MAKING
Decisions of the Workgroup will be made by consensus, which means that the whole group
consents or can live with the decision. Each decision will have some members more comfortable
on the matter than others. Consensus will reflect a decision that everyone can live with, after
thorough discussion and exchange of ideas.
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CYSHN Parent Workgroup Charge and Operating Guidelines
IX.
RESIGNATION
A CYSHN Workgroup member may resign at any time by providing written notice of resignation
to the MDH CYSHN Staff designated to the Workgroup. Any such resignation shall take effect at
the time specified by the member.
X.
SUBGROUPS / AD HOC GROUPS
The Workgroup may establish ad hoc workgroups to complete short-term projects with a
specific assignment and a timeline approved by the Workgroup. All ad hoc groups will report
regularly to the Workgroup on their progress.
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