1 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 e

2 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

3 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

4 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

5 Major Public Policy Issues in the Field of Neurodevelopmental Disabilities Americans with Disabilities Act Mental Health Parity Housing Issues Autism Issues Appropriations legislation Education legislation & policy Developmental Disabilities Act Genetics Information Non-Discrimination Act

6 We will tackle some of the following: 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

7 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?

8 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.

9 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 by October 1

10 Your Assignment #2 If your professional organization has a public policy newsletter, sign-up for it. Contact Association of University Centers on Disabilities (AUCD) and sign up for AUCD Legislative News In

11 Advocacy & Public Policy Engagement Activities One of the following per semester  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.  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 – 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

12 I AM VERY HAPPY THAT YOU ALL ARE HERE AND TO BE WORKING WITH YOU. QUESTIONS?