project leadership: chapter1 · 1.12.2018 · § lucile packard foundation for children’s health...
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PROJECT LEADERSHIP: CHAPTER1
Knowing the Past to Change the Future: History and Purpose of Advocacy
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PURPOSE
To learn about:
� Key legislation and policies
� The Disability Rights Movement
� What advocacy means
� Current issues
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WHAT DO WE LEARN FROM HISTORY?
We gain an understanding of the history of disability and how that history affects people’s lives today.
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WHAT DO WE LEARN FROM HISTORY?
Individuals and groups of individuals have the power to change systems and attitudes.
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KEY LEGISLATIONAND POLICIES
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THE DISABILITY RIGHTSMOVEMENT
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HOW CHANGE HAPPENS
“Power concedes nothing without a demand. It never did and it never will.”
-Frederick Douglas
Public Policy Advocacy:: A Grassroots Guide, The Statewide Parent Advocacy Network, span@spannj.org
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THE DISABILITY RIGHTS MOVEMENT AIMED TO:
Ø Improve the quality of life of individuals with disabilities through increased civil and legal rights.
Ø Decrease the pathologized view of disability, replacing it with the view that individuals with disabilities comprise a cultural or social minority group.
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SOCIAL PREJUDICES HAVE: � Excluded children with disabilities from
public schools.
� Confined people in state institutions and nursing homes.
� Sanctioned discrimination in housing,employment, and public accommodations.
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DISABILITY RIGHTS MOVEMENT
1960s� Civil Rights Movement� Women’s Rights Movement
1970s� Independent Living Movement
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BLANK SLIDE (HIDDEN)
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INDEPENDENT LIVING MOVEMENT ACHIEVED:
� Choice to live in the community
� Personal service assistance
� Removal of barriers to full participation
http://www.pbs.org/independentlens/lives-worth-living/
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HIGHLIGHTS OF THEDISABILITY RIGHTS MOVEMENT
Jeopardy
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3 KEY PIECES OF LEGISLATION
� Rehabilitation Act of 1973
� Education for All Handicapped Children of 1975
� Americans with Disabilities Act of 1990
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LANTERMAN ACT 1969
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Rights for individuals with developmental disabilities and their families to access the supports and services they need to live like people who are without disabilities.
FAMILY VOICES – ROLE OF PARENTS
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� Bringing our children home� Helping other families� Improving hospital policies� Advocating for inclusive education� Involving fathers� Seeking cultural competence� Conducting research� Assuring family-centered care� Improving state and federal policies� Encouraging youth to speak out� Partnering with government agencies� Training leaders
http://www.familyvoices.org/about?id=0002
MORE ON DISABILITY RIGHTSq http://www.pbs.org/independentlens/lives-worth-
living/disability-rights-timeline.htmlA PBS interactive timeline
q http://americanhistory.si.edu/disabilityrights/welcome.htmlSmithsonian Exhibition
q http://bancroft.berkeley.edu/collections/drilm/History of Disability Rights and Independent Living Movement
What Does It Mean To Advocate?
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PUBLIC POLICY ADVOCACYFOR SOCIAL CHANGE
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”Margaret Mead
Public Policy Advocacy:: A Grassroots Guide, The Statewide Parent Advocacy Network, span@spannj.org
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HAVE YOU EVER:� Gone to bat when there was a problem at school?
� Helped a relative or neighbor get care when they were sick?
� Asked friends to support a favorite project?
Then you have been an ADVOCATE!
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WHAT IS ADVOCACY?
Advocacy is speaking, writing, or acting in
support of a cause. It is something
most of us do routinely on behalf of ourselves, our families,
our neighbors,and our friends.
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ISSUE-BASED ADVOCACY
Ø Citizens advocate every day to remedy social problems pertaining to:
¢Gender¢The Environment¢Health Care¢Race¢Disability
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TYPES OF ADVOCACY
¢Self Advocacy¢Peer Advocacy¢Public Policy Advocacy¢Social Justice Advocacy¢Interest-Group Advocacy¢Bureaucratic Advocacy
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SERVICE VS. ADVOCACY
ØIdentifying the difference
Public Policy Advocacy: A Grassroots Guide, The Statewide Parent Advocacy Network, span@spannj.org
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ADVOCACY
� Change tactics over time
� Go up the “Chain of Command”
� Demand change
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LEVELS OF ADVOCACY LEADERSHIP: WORKING YOUR WAY UP
Public Policy Advocacy
Peer Advocacy
Individual Advocacy 33
CHECKLIST FOR PUBLIC POLICY ADVOCACY
q History and Purpose of Advocacyq Laws, Regulations & Systemsq Working with Decision Makersq Working & Communicating with Othersq Telling Your Story q Forms of Participationq Local Allies & Change Makers
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CURRENT ISSUES
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DEVELOPING AN ACTION PLAN
Focusing on:Ø Identifying the issue/problem to be
solvedØSetting goalsØ Identifying core constituencies
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MY ISSUES
¢What issues are important to me?¢Why are they important?¢Who do these issues affect?¢What can be done to change or improve
these issues?¢How would I like to get involved?
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SUGGESTED RESEARCH TOOLS
§ Family Voices of CA § Family Voices National§ Lucile Packard Foundation for Children’s Health§ Genetic Alliance§ CA Healthline§ California Health Report§ Centers for Independent Living§ National Newspapers (i.e., New York Times)§ Local Newspapers (i.e., SF Chronicle, Contra Costa Times) § Local Libraries§ Family Resource Centers 38
Chapter 1 Review
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HOMEWORK
Beginning Your Personal Action PlanØArticulate an issue or problem you
would like to solve.ØFormulate four clear goals. Ø Identify the core constituencies affected
by the issue.
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EVALUATION
� PurposeoTo get feedback on the effectiveness of this training
oTo identify what participants are learning
oTo find areas that can be improved
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