This document outlines a proposal for establishing Youth Advisory Councils (YACs) comprised of 5-10 members between ages 13-30. The goals of the YACs are to educate others on the experiences of young adults with conditions like spina bifida, develop social support networks, and provide youth perspectives to existing parent organizations. YACs will be formed in several countries and meet regularly to plan activities, with members volunteering their time and seeking small budgets for meetings and events. Establishing YACs will help address issues young adults face by empowering youth leadership and bridging communication between generations.

1. Youth Advisory Council
A Youth Advisory Council (Y.A.C) is a structured group with terms of reference that is comprised of 5-10
members.
Rational for the development of a Y.A.C.
 Combat lack of knowledge and negative attitude in society by sharing our stories and providing examples
of thriving young adults in their local communities.
 Presently, young adult issues are not routinely addressed in relation to life as, and as an adult living with
Spina Bifida and/or Hydrocephalus.
 to address the lack of comprehensive medical care for young adults and adults.
 Bridge the gap between Parent Groups ↔ Adults so that all persons with Spina Bifida and/or
Hydrocephalus can feel included and supported.
 Continue to address accessibility and civil rights for all persons with disabilities.
 to address the lack of comprehensive medical care for young adults and adults.
 Decrease social isolation and prevent secondary health problems that are a result.
Objectives of the Y.A.C.
 To educate and increase awareness of what can be learned from the lived experiences of young adults
with SB and H.
 To develop connections with children and youth and to plan local activities.
 Link with the International Youth Advisory Councils in Africa and eventually global youth through the
International Youth Network.
 Establish a relationship of mutual council with the Parent-to-Parent group.
Membership
 Chairperson
 Secretary/Administrator
 Social Convener
 Members
Members should be recognized as young leaders linked to Parents group.
The group needs to identify adult champions in the Parents group. Minutes
and/or reports will be shared with the parent group.
Skill development of the members should be encouraged by the parent group. Knowledge acquisition in leadership
skills is an important component to be developed:

2. The Chair of the Y.A.C. becomes a member of the parent group board. Report from Y.A.C. is included on the
Agenda at the Board meetings.
Guidelines
Each Y.A.C. will be responsible for developing guidelines and values that are important to their community and
their culture. For example, youth activities for adolescents 13+ may wish to exclude parents from social activities
as appropriate.
Process
At the “Sailing Off” workshop, November 1-4, 2011, youth leaders have identified youth leaders have made a
commitment to develop a Y.A.C. in Uganda, Zambia, Tanzania, Kenya, and Canada.
 Each identified leader will invite members to a first meeting to form the Y.A.C.
 All positions will be elected.
 After elections, the draft Terms of Reference will be reviewed and rewritten by each Y.A.C.
First Three Months
 The Y.A.C. will be formed and presented at the Parents group meeting.
First Year
 Y.A.C. meetings will be held on a monthly at the same time, same day of the month, and the same
location.
 Minutes will be recorded and an annual report will be presented to the Parent group board.
Budget
 Members will volunteer their time.
 Small budget will be prepared for the Y.A.C. meetings.
 An annual budget for proposed youth activities will be presented to the Parents group board on an
annual basis, to be included in their annul report.
We, as young leaders, are committed to encourage the formation of active Youth Advisory Councils in
each project.
LEADERS + VISION = RESULTS