presenters - nccc | home
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
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
12/14/2016
OBJECTIVESParticipants will: 1. Define self-advocacy.2. Describe the culturally-defined determinants that
influence self-advocacy.3. Explain how organizations tailor self-advocacy efforts to
the cultural and linguistically diverse populations thatthey serve.
4. Reflect on leadership that supports culturally-informedself-advocacy at the individual, family, and communitylevels.
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
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.
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
12/14/2016
Culture …
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.
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
CULTURE IS …
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.
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
12/14/2016
Intersectionality
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
Selected Definitions of Self-Advocacy
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
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/
12/14/2016
MANY DEFINITIONS 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.
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
Selected Definitions of Self- Advocacy
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
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
12/14/2016
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
Dori’s personal narrative on self-advocacy
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
Elver’s personal narrative about self-advocacy
12/14/2016
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
Diana’s insights on self-advocacy from an organizational perspective
Self-Advocacy through a Cultural Lens
Presented by:Diana Autin
Executive Co-Director, SPAN, home of theNational Center for Parent Information & Resources, & the
National RAISE Transition TA CenterCo-Director, National Center for Family-Professional Partnerships
Board Member, Federation of Families for Children’s Mental Health
12/14/2016
Diana Autin
Advocate
Attorney
Co-Director of a Family-Led Organization
Mom of diverse adult children
Native American/Cajun
What is self-advocacy?
Speaking up for yourself
Making your own decisions about your own life
Learning how to get information that you need
Finding out & connecting to those who will support you in your journey
Knowing your rights and responsibilities
Developing skills in problem solving, listening and learning
Reaching out to others when you need help and friendship
12/14/2016
To be able to influence decisions about your life based on your beliefs & expectations about your present & your future
To be able to move towards your vision, hopes, & dreams
Why is self-advocacy important?
Cultural beliefs about:
The importance of individual/personal “rights” vs. the importance of relationships
The desire to avoid conflict
The role of “authority” (professionals, agencies)
How systems will perceive “advocacy”
Cultural barriers to self-advocacy:For families re: systems
12/14/2016
Fear of, or actual:
Intimidation
Coercion
Retaliation
Immigration & Customs Enforcement (ICE)
Child welfare
Juvenile justice
Against you for your advocacy
Cultural barriers to self-advocacy:For families re: systems
Cultural expectations on the part of families about the decision-making role of parents vs. children (of any age)
Parent fears about the cultural assimilation of their children & abandonment of traditional values
Parent fears about the implications of self-advocacy on the part of their children
Cultural barriers for youth self-advocacy
12/14/2016
Discrimination Race, nationality, immigrant status, language Socio-economic status LGBTQ Other discrimination
Lack of access to resources to develop advocacy knowledge & skills, confidence/self-efficacy, & support
Lack of language access Low expectations for diverse youth/young adults with disabilities
Other Barriers to Self-Advocacy for Culturally/Racially/Ethnically Diverse Self-Advocates
Strengths-based
Family-centered
Solution-focused
Culturally responsive approaches to self-advocacy
12/14/2016
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
Advocacy “Formula”
12/14/2016
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
Ensure diverse staff
Avoid assumptions
Don’t paternalize
Allow mistakes
Make the space
Provide support
Listen, respond
12/14/2016
Pathways to Advocacy
• Critical supports for diverse families & youth:– Opportunities to practice
advocacy skills, & safe settings to practice them
– Relationship with respected & trusted people who provide feedback & support
– Sense of belonging
– Understanding of the expectations of systems & how they work
Opportunities for Advocacy at all levels
12/14/2016
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 &
community-based organizations Biannual Parent Leadership & Advocacy Conference teaching advocacy skills
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-
connections/the-partnership-way.html
Key Resources: Parent Self-Advocacy
12/14/2016
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-
resources-empowerment Youth MOVE: www.youthmovenational.org/
Key Resources: Youth Self-Advocacy
12/14/2016
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
Acknowledge differences in what self-advocacy means, how it is expressed and practiced by members of culturally diverse groups
1. Acknowledge cultural difference
2. Understand your own culture
3. Engage in self-assessment
4. Acquire cultural knowledge & skills
5. View behavior in a cultural context
Applying the Cultural Competence Framework to Self-AdvocacyFive Elements of Individual Cultural Competence
Acknowledge your conceptualization and beliefs about self-advocacy and how they influence your world view and actions
Reflect on the how culture is addressed in self-advocacy efforts in which you are involved
Inquire, learn, and practice how to support self-advocacy for individuals from culturally and linguistically diverse groups
Recognize the influence of culture on how and the extent to which individuals engage in self-advocacy
T.D. Goode
12/14/2016
WHAT IS YOUR ROLE AS LEADER
Slide Source:© 2016 - Georgetown University National Center for Cultural Competence
Model the way
Inspire a shared vision
Challenge the process
Enable others to act
Encourage the heart
Five Practices of Exemplary Leadership Leadership Practices Inventory
CULTURAL IMPLICATIONS OF SELF-ADVOCACY: INTENTIONALITY
CONTACT US
National Center for Cultural Competencehttp://nccc.georgetown.edu
The content of and this PowerPoint presentation are copyrighted and are protected by Georgetown University's copyright policies.
Permission is granted to use this PowerPoint presentation in its entirety and/or individual slides for non-commercial purposes if:
the material is not to be altered and
• proper credit is given to the author(s) and to the National Center for Cultural Competence.
Permission is required if the material is to be:
• modified in any way
• used in broad distribution.
To request permission and for more information, contact [email protected].