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.
BY ERIN SEIGH AND LAUREN AGORATUS, M.A.
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 inAdvisory 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-and-resources/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. It is important to consider the needs of all members and provide accommodations as needed. NJ YELL members have participated in face-to-face meetings, teleconferences, webinars and special events that are dedicated to increasing advocacy and improving transition to adult life. NJ YELL was the first youth group to present at a plenary session at the AMCHP (Association of Maternal and Child Health Programs) conference. NJ YELL maintains a Facebook page to share resources, events and information, as well as a Youth Resources for Empowerment page on the SPAN website. NJ YELL members receive stipends for sharing their perspective and participation in meetings.
The goal of NJ YELL is “To increase the participation of all youth in the decisions regarding their healthcare and access to services, to enable them to have leadership roles across the state of New Jersey by:
• Strengthening the voice of youth with special healthcare needs in the planning, implementation, and evaluation of integrated, community-based systems of care.
• Working to raise awareness, identify and implement strategies among providers, agencies and organizations that serve youth with special healthcare needs.
With additional PTI funding, NJ YELL expanded beyond healthcare transition. Its current mission is to:
• Understand rights and responsibilities and find resources such as housing, internships for college, education, DVRS (Division of Vocational and Rehabilitative Services), and health insurance needs.
• Learn skills and resources that will assist in promoting self-advocacy, and regulating self-care, pertaining to disability.
• Know what accommodations are needed for transition into adulthood.
• Learn ways to effectively communicate needs and wants to others.
• Use guidebooks and checklists with doctors, nurses, family and or counselors to aid in progress.
Other state youth groups include the New Hampshire YEAH (Youth Education, Advocacy, and Healthcare) Council, a collaboration of the NH PTI (NH Parent Information Center) and F2F (Family Voices-NH). The NH YEAH Council comes together monthly to discuss issues involved in what it means to be a young adult with a chronic health condition, and how best to make the transition to the adult healthcare system. They work to educate other youth on how to handle their transition to adulthood, as well as educating medical professionals about what they can do to facilitate that transition. For more information, visit their website at https://yeahnh.org/ or email them at yeahcouncil@nhfv.org.
NJ YELL : YOUTH EXCELLING IN LEADING & LEARNING
NJ YELL is a youth and young adult advisory council created to promote the voice of youth, build advocacy skills and increase participation in leadership roles to improve the systems that impact their lives in education, healthcare, and independent living by:
• Empowering youth and young adults by providing resources dedicated to understanding their rights in healthcare, education, employment and community
• Provide opportunities for youth to share their perspective with stakeholders to improve outcomes for New Jersey youth/young adults.
• Training for youth/young adults about policy issues, self-advocacy, independent living and civil rights.
• Reviewing materials aimed at youth/young adults and providing recommendations to ensure resources are “youth and user friendly.”
• Helping youth learn how to tell their story in ways that will make a difference at home, school, and community, and at state and national levels
In Puerto Rico, the Department of Health sponsors the Puerto Rico Youth Advisory Council, whose membership includes 25 youth with and without special healthcare needs and whose focus is using positive youth development to engage youth as leaders across all the health domains. Established by a Department of Health Administrative Order, it advises on youth-related initiatives and public policies regarding adolescent health, carries out public education with youth and adults, and represents the Department of Health at conferences, including the 2017 AMCHP (Association of Maternal and Child Health Programs) conference. You can find out more by contacting Bessie R. Lopez Melendez, the Positive Youth Development Coordinator, at bessielopez@salud.pr.gov.
There are many different kinds of groups that support input from youth and young adults with special needs. Hopefully, our example will provide inspiration and help you start your own group. Other opportunities for self-advocate representation include Centers for Independent Living, State Special Education Advisory Councils, and Governor’s Councils on Developmental Disabilities. In addition, Parent Training and Information Centers and Family to Family Health Information Centers can help families with transition issues (see Resources, previous page).
ABOUT THE AUTHORS:
Erin Seigh is the Transition Coordinator for the Statewide Parent Advocacy Network (SPAN).
Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at SPAN, found at www.spanadvocacy.org
YOU’VE GOT THE P0WER : RESOURCES FOR YOUTH EMPOWERMENT GROUPS
FAMILY VOICES KASA
(Kids as Self-Advocates)
www.fvkasa.org/index.php
SPAN-NJ YELL
(Youth Resources for Empowerment)
www.spanadvocacy.org/content/youth-resources-empowerment
CENTERS FOR INDEPENDENT LIVING
www.ilru.org/projects/cil-net/cil-center-and-association-directory
GOT TRANSITION
Transition from Pediatric to Adult Healthcare
www.gottransition.org
COUNCILS ON DEVELOPMENTAL DISABILITIES
http://nacdd.org/councils
PARENT TRAINING & INFORMATION CENTERS
For help with transition
www.parentcenterhub.org/find-your-center
PARENT CENTER HUB TRANSITION RESOURCES
www.parentcenterhub.org/resourcelibrary
(click on High School & Beyond)
NATIONAL RISE TRANSITION TA CENTER
www.raisecenter.org
STATE SPECIAL EDUCATION ADVISORY PANELS
https://collab.osepideasthatwork.org/SAP/contacts
