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Advocacy
Advocacy: the act or
process of supporting a cause or proposal.
Advocate: 1. One that pleads the cause
of another. 2. One that defends or maintains a cause or
proposal. 1
Why
Is Advocacy Important?
- Keeps the well-being of the child
and family at the forefront
- Promotes change at the “systems”
level
- Enhances the impact of individual
efforts
- Works to overcome system barriers
- Highlights services that are available
to the public
Where Is Advocacy Needed?
Advocacy should be a part of all aspects of care.
- Financial: access, managed care; Medicaid/SCHIP;
reimbursement; supplemental assistance/programs
- Community: school, respite, child care,
transportation
- Psychosocial: family, abuse/neglect,
palliative care, foster care/adoption
- Legal: guardianship, liability, do
not resuscitate, consent, confidentiality
Families and Advocacy
Family Voices, a national grassroots network of families and friends, has compiled a list of materials to assist families in their efforts to advocate for their child and on behalf of all CYSHCN and their families. To access their materials go to: http://www.familyvoices.org/pub/index.php?topic=advocacy
Friday’s Child Newsletter (Current
Issue)
A weekly e-newsletter containing information for existing
and emerging family leaders on topics such as leadership,
mentoring, partnering and team building. Helpful websites,
legislative updates, data bytes and FV-Talk summaries are
regular features. Sent by e-mail every Friday to all Family
Voices Network members, staff, board members, funders, key
stakeholders and friends of Family Voices.
Tools for Parents of Children with Special Needs EXCEPTIONAL
EDUCATION: GETTING PARENTS INVOLVED
By: James J. Messina, Ph.D.This manual provides information
on what is a parent advocate, and what are the steps involved
in becoming a parent advocate.
www.coping.org/specialed/involve.htm
Physicians and Advocacy
The Elements of Effective Testimony Fact
sheet 
Thomas W. Pendergrass, MD, MSPH
Chair, Committee on State Government Affairs, American Academy
of Pediatrics
Tips for Crafting an Effective Message Fact
sheet
Thomas W. Pendergrass, MD, MSPH
Chair, Committee on State Government Affairs, American Academy
of Pediatrics
General Advocacy Information
Community Tools for Improving Child Health: A Pediatrician's
Guide to Local Associations by John L. McKnight and Carol
A. Pandak
Pediatricians are becoming increasingly aware of
the importance of non-medical determinants in the healthy
development of children. This booklet offers a guide to
how pediatricians and others can mobilize the resources
and leaders of local community associations to improve child
health. The authors see these associations as "powerful
new tools" that can be used to plan and implement child
health projects for the community and to provide information
to local citizens. The booklet contains a project worksheet
to plan how to involve associations in such projects and
to spell out tasks for various groups to augment these efforts.
It also provides a typology of associations and offers specific
steps to locate them within the community. Download
the booklet.
Self-Paced Web Class Explains ADA
The Americans with Disabilities Act (ADA) Basic Building
Blocks is an introductory
web course that explores the legal requirements and
the spirit of the Americans with Disabilities Act of 1990.
The course content is self-paced and organized into 12 topics
that have been designed to be studied in order, covering
the basic principles and core concepts of the Act. The Great
Lakes ADA and Accessible IT Center has developed this online
course through a collaboration with the 10 Regional Disability
and Business Technical Assistance Centers (DBTACs).
Objectives
- Discuss the purpose of the ADA using a civil rights
framework.
- Identify the five titles of the ADA.
- Define the general nondiscrimination requirements of
the ADA.
- Explain each nondiscrimination requirement using 1-2
real-life examples.
- Identify the defenses or limitations of each nondiscrimination
requirement.
- Become familiar with various resources for information
on the ADA.
- Earn a Certificate and CEU.
This tool kit was developed at the request
of volunteers, advocates, self-advocates, and professionals
concerned that the remarkable progress made towards the
inclusion of people with cognitive, intellectual and developmental
disabilities (our constituents) into the fabric and mainstream
of community life in America was at risk. In some places
in the United States there are those who would not only
continue to deny people currently in public and private
institutions freedom and opportunity through continued institutionalization
but who also want to expand the role of institutions in
the lives of our constituents.
You are free to copy or modify any of the information in
this tool kit for your use. If it is photocopied or reproduced
from a journal or magazine, you need to get permission to
copy it from the journal or magazine publisher. The published
articles, book chapters and monographs should be cited as
such with respect to the authors and to copyright laws.
A full copy of the Tool Kit can be downloaded or printed.
It is a large document and may take a considerable amount
of time to download. You can order a complete copy of the
Tool Kit including a CD with all documents. See the order
form below.
Copy of Tool Kit - PDF (15 mb):
http://thechp.syr.edu/toolkit/Community_for_All_Toolkit_Version1.1.pdf
Order Form for Tool Kit - PDF
http://thechp.syr.edu/toolkit/Communit_for_All_ToolKit_OrderForm.pdf
Web site for Tool Kit: http://thechp.syr.edu/toolkit/
Training/Presentations
State and Local Advocacy
Presentation
Focuses on the role of the pediatrician as an advocate for
child health. You can view this component of the Every
Child Deserves a Medical Home curriculum as well as
other parts of the curriculum by clicking
here.
Overview
1. Understand why advocacy is so important.
2. Identify advocacy action-steps for individuals.
3. Encourage partnerships to enhance advocacy action.
4. Apply advocacy skills to local case study.
Materials
1. Training
Pediatricians to Become Child Advocates
2. Families
as Advocates: Being a Health Advocate for Your CSHCN
3. 10
Tips for Child Advocates
4. State
Governmental Affairs Handbook Chpt 11: Advocacy Communications
5. Pediatricians
Partnering With States To Assure That CSHCN Are Provided
Appropriate Services: The Vermont Experience With Managed
Medicaid
6. Working
to Improve Mental Health Services: The North Carolina
Advocacy Effort
7. 10
Steps for a Successful Legislative Visit
8. Eight
Do’s and Don’ts for Non-Profits in an Election
Year
The Pediatrician and Advocacy for
Children with Special Health Care Needs
Presentation
Ron S. Levin MD
Center for Infants and Children with Special Needs
Cincinnati Children's Hospital Medical Center
On-going Residency Teaching Program
Overview
1. Who are CSHCN and why is advocacy needed?
2. Background and history for pediatricians being advocates
3. Barriers to advocacy
4. Specific issues and case examples
Advocacy & Lobbying at The
State and Local Level Presentation
Microsoft Powerpoint
Thomas W. Pendergrass, MD, MSPH
Chair, Committee on State Government Affairs, American Academy
of Pediatrics
May 18, 2003
Overview
1. Explore the opportunities for physician involvement
in advocacy
2. Learn ideas for how to get involved in your community
3. Discover why physicians should lobby and what it takes
Medical - Legal Partnerships: Advocacy Within the
Medical Home Presentation
(7.06
MB)
David
Keller, MD, FAAP* (326 KB)
Associate Professor of Clinical Pediatrics Department of
Pediatrics, University of Massachusetts Medical School
Rebecca
Kislak, JD (26 KB)
Staff Attorney, Legal Assistance Corporation of Central
Massachusetts
Ellen Lawton, JD
Director, Family Advocacy Program, Boston Medical Center
Overview
1. By the end of the workshop, participants will be able
to:
2. Describe 3 ways in which legal services can improve
the health of children.
3. Identify a potential partner with whom to develop a
program within their medical home
4. Plan a meeting of stakeholders within their medical
home to build a medical-legal partnership
Materials
1. Medical
Legal Partnerships
Web sites/Organizations
Advocates 4 Special Kids: www.a4sk.org/
A4SKŪ is a non-profit association whose Board of Directors
offer services to parents, professionals, and adults of
children withspecial needs and learning disabilities. A4SK
is designed to train parents of children with special needs
to advocate for their child's rights and responsibilities
for a free and appropriate education under the law.
Advocates Across America: www.axa.org/
Advocates Across America is dedicated to teaching parents
and other interested people how to effectively advocate
for the educational rights of children with special needs.
Resources include training tapes and manuals, legal advocacy,
and newsletters.
American Academy of Pediatrics Links to Government Policy
Organizations: www.aap.org/advocacy/sgalinks.htm
Helpful information is available on this Academy site about
groups with which AAP Chapters have worked in coalitions,
state government organizations, information on finding statutes/regulations,
health data sources, and foundations with useful resources.
American Academy of Pediatrics - Department of Federal
Affairs: www.aap.org/advocacy/washing/wnews.htm
News and Press releases from the AAP Washington DC office
is posted here.
American Nurses Association: www.ana.org
Americans with Disabilities Act (ADA) Technical
Assistance: www.adata.org
The National Institute on Disability and Rehabilitation
Research (NIDRR) has established ten regional centers to
provide information, training, and technical assistance
to employers, people with disabilities, and other entities
with responsibilities under the ADA.
The centers act as a "one-stop" central, comprehensive
resource on ADA issues in employment, public services, public
accommodations, and communications.
Each center works closely with local business, disability,
governmental, rehabilitation, and other professional networks
to provide ADA information and assistance. Programs vary
in each region, but all centers provide the following: Technical
Assistance | Education and | Training | Materials Dissemination
| Information and Referral | Public Awareness
Local Capacity Building.
Association of Maternal Child Health Programs Legislative
Action Center: www.amchp.org/legislative/index.php
The Child Advocacy Project of
Philadelphia: www.cap4kids.org/philadelphia
Within this site you will find a user-friendly, comprehensive
listing of many social service agencies that exist to improve
the lives of families that need our help the most.
The Parent Handouts and sample
advocacy letters are the backbones of this project.
The Parent Handouts are broken down by
category and within each handout, you will find a description
of the social service agency, their address, and a phone
number. You may also find a link to the agencies web site
that you can access and learn more about that agency. You
may also download a PDA version of these handouts for quick
access to the descriptions of various agencies and their
contact information.
Center on Budget and Policy Priorities: www.cbpp.org
Center for Health Services Research and Policy: www.gwhealthpolicy.org
The Center for the Study and Advancement of Disability
Policy (CSADP)
www.disabilitypolicycenter.org
Provides public education, leadership development and training,
technical assistance and information dissemination, and
conducts action-research and analysis of public policy issues
affecting individuals with disabilities and their families.
Connect for Kids Weekly: www.connectforkids.org
The Council of Parent Attorneys and Advocates: www.copaa.net/
An independent, nonprofit, tax-exempt organization of attorneys,
advocates and parents established to improve the quality
and quantity of legal assistance for parents of children
with disabilities.
Council of State Government: www.csg.org/csg/default
Equip for Equality, Inc: www.equipforequality.org/
Established in 1985, the mission of Equip for Equality,
Inc. is to advance the human and civil rights of people
with disabilities in Illinois. Equip for Equality is a private
not-fMarch 8, 2007 governor to operate the federally mandated protection and
advocacy system (P&A) to safeguard the rights of people
with physical and mental disabilities, including developmental
disabilities and mental illnesses.
Families USA: www.familiesusa.org
A national nonprofit, non-partisan organization dedicated
to the achievement of high-quality, affordable health care
for all Americans. Working at the national, state, and community
levels. Resources include: Media Center, Publications, Action
Center, Tools for Advocates, State Information, and the
Health Assistance Partnership.
Family Voices: familyvoices.org
This site is where advocates of children with disabilities
join to offer stories, current events, links, and opportunities
for others to help.
FirstGov.gov
FirstGov.gov
provides information about official programs and services,
as part of President Bush's plan to use the Internet to
improve public access to government information. FirstGov
is a centralized collection of major federal agencies' as
you can search more than 186 million web pages from federal
and state governments, the District of Columbia and U.S.
territories. Most of these pages are not available on commercial
web sites. FirstGov has the most comprehensive search of
government anywhere on the Internet.
To access FirstGov en Espanol go to:
www.firstgov.gov/Espanol/index.shtml
The Individuals with Disabilities Education Act: www.ideapolicy.org/
The Individuals with Disabilities Education Act Amendments
of 1997 were signed into law on June 4, 1997. This Act strengthens
academic expectations and accountability for the nation's
March 16, 2007gap
that has too often existed between what children with disabilities
learn and what is required in regular curriculum.
IDEA Practices: www.ideapractices.org/
Welcome! This site answers your questions about the Individuals
with Disabilities Education Act, keeps you informed about
IDEAs That Work, and supports your efforts to help ALL children
learn, progress, and realize their dreams.
Legal.com: www.legal.com/
Welcome to Legal.com, the original law specialty Web site
on the Internet, where you can purchase self-help law books
and find helpful articles, join a legal services plan or
locate an attorney who can help you or your family.
National Academy for State Health Policy: www.nashp.org
National Association of Attorneys General: www.naag.org
National Conference of State Legislatures: www.ncsl.org
National Governors Association: www.nga.org
Parent to Parent: www.p2pusa.org/
An alliance of Parent to Parent programs whose primary purpose
is to help emerging or established Parent to Parent programs
by: providing a clearinghouse of information and support
on best practices | offering networking and peer mentoring
experiences | mentoring future Parent to Parent leaders
| nurturing and developing key relationships that enhance
P2P programs' ability to support families, and effect policy
change.
This site has been designed for the following purposes:
- To connect parents, family members, and professionals
to a Parent to Parent program within your state or a neighboring
state.
- To provide Technical Assistance to experienced and/or
emerging Parent to Parent programs nationally and internationally
and to assist those interested in starting a program.
- To educate parents, family members and professionals
about the efficacy and methodology of parent to parent
support.
Patient Advocate Foundation: www.patientadvocate.org
Patient Advocate Foundation is a national non-profit organization
that serves as an active liaison between the patient and
their insurer, employer and/or creditors to resolve insurance,
job discrimination and/or debt crisis matters relative to
their diagnosis through case managers, doctors and attorneys.
Patient Advocate Foundation seeks to safeguard patients
through effective mediation assuring access to care, maintenance
of employment and preservation of their financial stability.
Special Education Legal Rights Strategies: www.reedmartin.com/index.htm
The Web site where you get real answers to your questions
with strategies to secure your child's rights!
Special Needs Advocate for Parents (SNAP): www.snapinfo.org/
SNAP provides information, education, advocacy and referrals
to families with special needs children of all ages and
disabilities. The site contains information related to resolution
of medical insurance problems, referrals to educational
advocates, support groups, and related organizations and
professionals, a directory of attorneys, special needs estate
planning via seminars and private, and consultations certified
special needs advisors.
World Institute on Disability: www.wid.org/
WID is a nonprofit research, training and public policy
center promoting the civil rights and the full societal
inclusion of people with disabilities
Wrightslaw: www.wrightslaw.com/
You'll find hundreds of articles, cases, newsletters, and
other information about special education law and advocacy
in the Wrightslaw Libraries. Parents, advocates, educators,
and attorneys come to Wrightslaw for accurate, up-to- date
information about advocacy for children with disabilities.
1. Webster’s
II New College
Dictionary. Boston,
MA: Houghton Mifflin Company; 1999
Last Updated
March 8, 2007
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