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PROJECT LEADERSHIP: CHAPTER1 Knowing the Past to Change the Future: History and Purpose of Advocacy 4

PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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Page 1: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

PROJECT LEADERSHIP: CHAPTER1

Knowing the Past to Change the Future: History and Purpose of Advocacy

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Page 2: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

PURPOSE

To learn about:

� Key legislation and policies

� The Disability Rights Movement

� What advocacy means

� Current issues

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Page 3: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 4: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

WHAT DO WE LEARN FROM HISTORY?

Individuals and groups of individuals have the power to change systems and attitudes.

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Page 5: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

KEY LEGISLATIONAND POLICIES

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Page 6: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

THE DISABILITY RIGHTSMOVEMENT

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Page 7: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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, [email protected]

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Page 8: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 9: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 10: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

DISABILITY RIGHTS MOVEMENT

1960s� Civil Rights Movement� Women’s Rights Movement

1970s� Independent Living Movement

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Page 11: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

BLANK SLIDE (HIDDEN)

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Page 12: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 13: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

HIGHLIGHTS OF THEDISABILITY RIGHTS MOVEMENT

Jeopardy

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Page 14: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 15: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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.

Page 16: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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

Page 17: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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

Page 18: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

What Does It Mean To Advocate?

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Page 19: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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, [email protected]

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Page 20: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 21: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 22: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 23: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

TYPES OF ADVOCACY

¢Self Advocacy¢Peer Advocacy¢Public Policy Advocacy¢Social Justice Advocacy¢Interest-Group Advocacy¢Bureaucratic Advocacy

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Page 24: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

SERVICE VS. ADVOCACY

ØIdentifying the difference

Public Policy Advocacy: A Grassroots Guide, The Statewide Parent Advocacy Network, [email protected]

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Page 25: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

ADVOCACY

� Change tactics over time

� Go up the “Chain of Command”

� Demand change

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Page 26: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

LEVELS OF ADVOCACY LEADERSHIP: WORKING YOUR WAY UP

Public Policy Advocacy

Peer Advocacy

Individual Advocacy 33

Page 27: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 28: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

CURRENT ISSUES

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Page 29: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

DEVELOPING AN ACTION PLAN

Focusing on:Ø Identifying the issue/problem to be

solvedØSetting goalsØ Identifying core constituencies

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Page 30: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 31: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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

Page 32: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

Chapter 1 Review

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Page 33: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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Page 34: PROJECT LEADERSHIP: CHAPTER1 · 1.12.2018  · § Lucile Packard Foundation for Children’s Health § Genetic Alliance § CA Healthline § California Health Report § Centers for

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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