LEND
Advocacy & Public Policy
Jerome A. Paulson, MD, FAAP
Associate Professor of Pediatrics & Public Health
George Washington University
Medical Director for National & Global Affairs
Child Health Advocacy Institute
Co-Director
Mid-Atlantic Center for Children's Health & the Environment
p 202-471-4891
e jpaulson@cnmc.org
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So, who is this guy?
• Pediatrician
• Advocate at state level
• Robert Wood Johnson
Health Policy Fellow
• Joseph P. Kennedy, Jr.
Foundation
• Work for Executive Branch
agency
• Soros Advocacy Fellow
• Volunteer advocacy work for
AAP, APA, etc.
• MACCHE
• CHAI
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So, who is this guy?
• Personal Interests
 Reading – Sci Fi
 Traveling with my wife
 Kids & Grandkids
• Something LENDers
should know about me
 Support the Renwick
Gallery of the
Smithsonian
 Collect Contemporary
Crafts
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What are we going
to do together this year?
• Learn something about the formulation of
public policy in the US – local, state, federal
• Learn something about the major public policy
issues in the field of neurodevelopmental
disabilities
• Put that knowledge together to participate in 2
engagement activities
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Major Public Policy Issues
in the Field of
Neurodevelopmental Disabilities
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Americans with Disabilities Act
Mental Health Parity
Housing Issues
Autism Issues
Appropriations legislation
Education legislation & policy
Developmental Disabilities Act
Genetics Information Non-Discrimination Act
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We will tackle
some of the following:
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What’s authorizing legislation?
What’s an appropriation?
What’s a law?
What’s a regulation?
What kinds of things are the responsibility of
the federal, state or local governments?
• What’s the role of the executive, legislative and
judicial branches of government
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We will tackle
some of the following:
• So I want to be a leader in the field of
neurodevelopmental disabilities, what does all of
this mean to me?
• How will knowing this information help me, my
patients or clients, my professional organizations
and “the field?”
• What does it mean to be an advocate and how
does one advocate?
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Goals for
Public Policy & Advocacy
• Trainees will:
 become aware of the legal, medical, educational, and social
service systems which impact children with disabilities and
their families.
 learn how to advocate individually for children with
neurodevelopmental disabilities and their families within the
larger systems.
 learn how to advocate for children with neurodevelopmental
disabilities more broadly.
 critically analyze the systemic barriers to providing
contemporary services to children with disabilities.
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Your Assignment #1
• Contact your own professional organization (nursing,
social work, physical therapy, psychology, dentistry,
medicine, speech/language pathology)
• Determine what their 2 or 3 most important public
policy issues are at the federal level
 If “most important” don’t include INDD, ask their position
on an INDD issue that you are aware of
• Send that information to me and to all of the other
LEND fellows via e-mail (jpaulson@cnmc.org) by
October 1
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Your Assignment #2
• If your professional organization has a public
policy newsletter, sign-up for it.
• Contact Association of University Centers on
Disabilities (AUCD) (kmusheno@aucd.org) and
sign up for AUCD Legislative News In Brief
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Advocacy & Public Policy
Engagement Activities
•
One of the following per semester
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Attend the symposium on issues related to the
employment of individuals with disabilities on
October 12 the GUCCHD and write a brief
description for the LEND portal. (For details
contact Dr. Long)
Attend the AUCD Policy Seminar (Feb 14-15, 2011)
and write a brief description for the LEND portal.
Write a letter to the editor of a national publication
on a current INDD public policy topic and post a
copy to Blackboard. (New York Times, Washington
Post, Wall Street Journal, Time magazine, News
Week).
Attend a hearing, mark-up, legislative briefing or
other similar activity on Capital Hill or a state capital
and write a brief description for Blackboard.
Write a letter to a legislator (local, state or federal) or
an executive branch official about a current INDD
public policy issue and post a copy to Blackboard.
Make an individual or small group (no more than 3
people) visit to a legislator (local, state or federal) or
an executive branch official about a current INDD
public policy issue and write a brief description for
Blackboard.
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
Write a blog posting to Blackboard on a current
INDD public policy issue at least once a month for
6 months.
Set up a meeting with a local advocacy organization
and determine what their public policy agenda is,
how they manage it on a local level and the role that
they see for professional in forwarding that agenda.
Write a report for Blackboard. Local organizations
include
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The Arc of DC
University Legal Services
The Quality Trust
Advocates for Justice in Education
HSC Foundation
Federation of Families for Children's Mental Health
DC Developmental Disabilities Council
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I AM VERY HAPPY THAT YOU ALL
ARE HERE AND TO BE WORKING
WITH YOU.
QUESTIONS?
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