Youth Empowerment Groups Encourage Self-Advocacy: Groups for Youth and Young Adults May Provide Opportunity for Building a Foundation of Skills to Address Core Concepts That Enable Youth to Have Meaningful Participation in the Process of Planning for Their Own Futures

The Exceptional Parent, October 2017 | Go to article overview

Youth Empowerment Groups Encourage Self-Advocacy: Groups for Youth and Young Adults May Provide Opportunity for Building a Foundation of Skills to Address Core Concepts That Enable Youth to Have Meaningful Participation in the Process of Planning for Their Own Futures


Students with disabilities need to learn how to advocate for themselves in order to foster independence when transitioning to adult life. Groups that encourage the voices of youth and young adults can help facilitate this process.

Core Concepts of Transition

For students receiving special education, transition planning is required in the IEP (Individualized Education Program) and includes:

* Education

* Community Participation

* Employment

* Independent Living

It is important to keep in mind that regardless of disability status, the American Academy of Pediatrics states that all youth require healthcare transition from pediatrics to adult providers. For some students receiving special education, the healthcare transition component may be a very important factor in all four transition domains of the IEP and should be considered when developing goals.

Groups for youth and young adults may provide opportunity for building a foundation of skills to address these core concepts that enable youth to have meaningful participation in the process of planning for their own futures.

Examples of Youth Empowerment Groups: Health Advocacy on National and State Levels

Family Voices national ("keeping families at the center of children's health care") supports a group called KASA, Kids as Self-Advocates. This is a national group created by and for youth with special needs. KASA representatives are leaders in their communities. They discuss information among their peers, enabling them to become more independent. KASA representatives work with healthcare providers, policymakers, and others to voice their concerns. KASA recognizes that youth and young adults can make choices and self-advocate, and develops and disseminates resources to help youth do so. Examples include tip sheets on Civil Rights and Advocacy, Going to College, and Working with a Group, among others. KASA also has a Facebook page which they use to alert the KASA network about current events (for instant advocacy), and connect members with each other.

The National Center for Family Professional Partnerships, a project of Family Voices in collaboration with SPAN, includes a focus on enhancing diverse youth participation in systems-level groups to improve services to and outcomes for youth with special healthcare needs. Working with KASA, the Autistic Self-Advocacy Network, and Youth MOVE, the NCFPP facilitated three webinars last year to support youth advocacy: Participating in Advisory Groups; Sharing your Story for a Public Policy Purpose; and Working with Adult Allies. You can find these webinars at www.fv-ncfpp.org/tools-andresources/training-webinars/.

Building on the KASA concept, many state Family to Family Health Information Centers (F2Fs) and Parent Training and Information Centers (PTIs) have developed state Youth Advisory Councils. The Statewide Parent Advocacy Network (SPAN), which is the NJ F2F and PTI, as well as home for NJ Family Voices, collaborated with KASA to form NJ YELL (Youth Excelling to Lead & Learn.) Originally funded by HRSA (Health Resources and Services Administration), NJ YELL became part of the state's Community of Care Consortium (COCC) which is comprised of key stakeholders including government agencies, family organizations, and medical providers, dedicated to improving NJ's performance measures for the six core outcomes for children with special healthcare needs and their families, one of which is transition. NJ YELL participation in the COCC provides a unique opportunity for youth to have direct engagement, as well as the opportunity to advise those in charge of the systems of care that serve children and youth.

NJ YELL is comprised of a culturally diverse membership, which welcomes ALL youth/young adults ages 16-26. There is no criteria for membership beyond that of wanting to learn, collaborate and hopefully have a little fun along the way. …

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