This document is posted to help you gain knowledge. Please leave a comment to let me know what you think about it! Share it to your friends and learn new things together.
Transcript
12/14/2016
CULTURAL IMPLICATIONS OF SELF-ADVOCACY
December 14, 2016
PRESENTERS Elver Ariza-Silva, Individual and Family AdvocateDC Quality Trust for Individuals with Disabilities
Diana Autin, Executive Co-Director for Health and Family SupportStatewide Parent Advocacy Network of New Jersey (SPANNJ)National Field Co-Coordinator, Family Voices
Dori Tempio, Community Outreach & Consumer Rights CoordinatorAble South Carolina
Tawara D. Goode, Principal InvestigatorLeadership Institute for Cultural Diversity and Cultural and Linguistic CompetenceGeorgetown University National Center for Cultural CompetenceGeorgetown University Center for Excellence in Developmental Disabilities
Culture is the learned and shared knowledge that specific groups use to generatetheir behavior and interpret their experience of the world. It includes but is not limited to:
thought
languagesvalues
beliefs
customs
practicescourtesies
ritualscommunication
roles
relationships
expected
behaviors
Culture applies to racial, ethnic, religious, political, professional, and other social groups. It is transmitted through social and institutional traditions and norms to succeeding generations. Culture is a paradox, while many aspects remain the same, it is also dynamic, constantly changing.
manners of
interacting
Data Source: Gilbert, J. Goode, T., & Dunne, C., 2007.
is applicable to all peoples is value laden & rooted in belief systems is active & dynamicis multilayered & multidimensional exists at conscious & unconscious levels is often viewed as thick, thin, or compartmentalized provides group member identitystructures perceptions & shapes behaviors varies in expression both among and between
individual group members permeates every aspect of life
Goode, T. & Jones, W. Cultural Influences on Child Development: The Middle Years. In T. Gullotta T. & G. Blau (Eds.) Family Influences on Childhood Behavior and Development: Evidence-based Approaches to Prevention and Treatment Approaches. New York: Routledge, Taylor & Francis Group, 2008.
Comprised of beliefs about reality, how people should interact with each other, what they know about the world, and how they should respond to the social and material environments in which they find themselves.
Reflected in religion, morals, customs, politics, technologies, and survival strategies of a given group. It affects how groups work, parent, love, marry, and understand health, mental health, wellness, illness, disability, and end of life.
Data Source: Gilbert, J., Goode, T. D., & Dunne, C. (2007). Cultural awareness. From the Curricula Enhancement Module Series. Washington, DC: National Center for Cultural Competence, Georgetown University Center for Child and Human Development.
The action of representing oneself or one’s views or interestshttp://www.oxforddictionaries.com/us/definition/american_english/self-advocacy
An individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=definition+of+self-advocacy
Any time people speak or act on their own behalf to improve their quality of life, effect personal change, or correct inequalitieshttps://teachingselfadvocacy.wordpress.com/description-of-self-advocacy/
Self-advocacy is defined in different ways by different constituents and groups.
Self-advocacy has been closely associated with disability rights and civil rights for individuals with disabilities, with a particular emphasis on individuals with intellectual disabilities.
Many individuals with intellectual disabilities have embraced the term of self-advocate to refer to themselves.
Self advocacy is a set of skills that includes: (1) Speaking up for yourself; (2)
Communicating your strengths, needs and wishes; (3) Being able to listen
to the opinions of others, even when their opinions differ from yours; (4)
Having a sense of self-respect; (5) Taking responsibility for yourself; (6)
Knowing your rights; and (7) Knowing where to get help or who to go to
with a question.http://www.pacer.org/parent/php/PHP-c95.pdf
Self advocacy is speaking up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination. http://www.wrightslaw.com/info/self.advocacy.htm
Identify small group of parents/youth from community of focus & community cultural brokers
Ask for their help/be led by their wisdom in:
Understanding cultural, language, religious impacts (both sources of strength & potential barriers)
Developing strategies to reach, engage, & support families/youth from their background & address fears including helping parents understand the importance of youth self-advocacy
Implementing strategies
Evaluating progress & planning next steps
Peer stories provide an emotional connection that is just as important as the “rights”/systems navigation information
Starting place
Understanding Peers who have “been there” Peers who are “like me”
Start where diverse youth are Help identify where they want to go Build: Trust Knowledge & Skills Recognition of their own strengths Self-confidence
Provide opportunities to practice advocacy at all levels Pair with peers for collaborative advocacy Build/connect with support networks Focus on benefits to others/”the community” of advocacy
Laws & regulations Rights now, rights at age of majority
How institutions work Key decision-makers Formal & informal decision-making Facts; current status Barriers & solutions Qualities of effective systems Existing resources
Advocacy Knowledge
Building & Supporting Advocacy
Nurture it
Be led by parents & youth from diverse communities
Toll-free # available for parents, youth, & professionals Staff & leadership speaking 10 languages representing NJ’s diversity Language line for other languages Evening & weekend hours to meet diverse needs
Intensive 1-1 support for families/youth with greatest needs Help prepare for meetings Accompany to meetings (IEP, home visits, doctor visits) Local support groups for immigrants, families of color, grandparents raising grandchildren,
etc.
Workshops on key advocacy issues (education, health, transition, disability) Workshops provided in multiple languages Simultaneous interpretation as needed Workshops held in underserved communities & in partnership with immigrant &
Multi-lingual resources Key informational materials available in 7 languages
Building Diverse Family Self-Advocacy
Webinar series Talking with your youth about their disability Self-disclosure about your disability Integrating Health into the Transition IEP IDEA & Transition Laws providing access to young adults post-high school Supported Decision-Making & Alternatives to Guardianship Vocational Rehabilitation WIOA
Supporting participation of diverse youth at the REACH follow-up forum youth roundtables
Sponsoring full day regional interactive youth advocacy development workshops (North, Central, South Jersey) each year
Building Diverse Youth Capacity:SPAN, REACH for Transition, & RAISE
12/14/2016
Host an annual forum for the 19 parent centers in the 9 NE states (CT, ME, MA, NH, NJ, NY, PA, RI, VT) on: Building capacity of diverse youth self-advocates
Helping parents support their youths’ self-advocacy
Panel of diverse youth/young adult leaders representing KASA, ASAN, Youth MOVE, “teaching” parent center staff (2015) What their parents did to support their self-advocacy
How to work effectively with youth with different disabilities
Supported parent center staff & youth leaders in a full day roundtable on resources to enhance youth self-advocacy for youth from diverse backgrounds with a variety of disabilities (2016)
Learning from youth self-advocates:REACH for Transition
NJ YELL (Youth Engaged in Leading & Learning)
Selected Example of Success
12/14/2016
Provided initial & ongoing youth development Individual level advocacy: Youth leading/more engaged in their own transition meetings Youth speaking to doctors about their own healthcare
Systemic level advocacy by diverse NJ YELL Youth leaders: Input into Boggs Center health transition guide for youth & SPAN
transition guide Panel presentations to doctors & providers Keynotes at regional youth leadership conferences Presentation at national AMCHP Conference Plenary session Testified at Maternal & Child Health Block Grant hearing Maintain SPAN Youth Resources for Empowerment website Co-lead Transition Workgroup of NJ Community of Care Consortium
NJ YELL
National Center for Family-Professional Partnerships: www.fv-ncfpp.org National Center for Parent Information & Resources: www.parentcenterhub.org National Center for Parent Leadership, Advocacy, & Community Empowerment:
www.parentsatthetable.org National Association for Family, School, & Community Engagement:
http://nafsce.org/ Serving on Groups Parent Leadership Development: www.servingongroups.org Community Organization & Family Issues: www.cofionline.org/ Dual Capacity-Building Framework for Family-School Partnerships:
www2.ed.gov/documents/family-community/partners-education.pdf Family Engagement Inventory: www.childwelfare.gov/fei/practice-strategies/ Parents Anonymous Shared Leadership: http://parentsanonymous.org/parent-
shared-leadership/ The Partnership Way: Leading by Convening: www.ideapartnership.org/building-
Autistic Self-Advocacy Network: http://autisticadvocacy.org/ Got Transition National Healthcare Transition Center: www.GotTransition.org Kids As Self-Advocates: www.fvkasa.org/index.php National Center for Parent Information & Resources Youth Self-Advocacy Resources:
www.parentcenterhub.org/?s=youth+self+advocacy National Center on Secondary Education & Transition: www.ncset.org National Collaborative on Workforce & Disability for Youth: www.ncwd-youth.info/ National Gateway to Self-Determination: www.ngsd.org National RAISE Transition TA Center: www.raisecenter.org/ National Resource Center for Supported Decision-Making:
www.supporteddecisionmaking.org National Technical Assistance Center on Transition: http://transitionta.org/ Quality Trust for Individuals with Disabilities: www.DCQualityTrust.org SPAN Youth Resources for Empowerment: www.spanadvocacy.org/content/youth-