AUCD’S DISABILITY POLICY FELLOWSHIP

A DECADE’S WORTH OF ADVOCACY AND

LEADERSHIP

A special thank you to the Dr. Susan Vig and the wonderful Rose F. Kennedy Center staff for allowing me to come back and present to you today. Thank

you to all those who made these experiences possible, especially Dr. Bob Marion and Ms. Sheryl

Dicker, and all my directors and colleagues at AUCD.

THANK YOU

WASHINGTON, DC

Our nation’s capitol, and the center of advocacy and change. When in DC, one is surrounded by diagonal streets (The French architect - L’Enfant’s famously unique design) with their state’s name printed proudly across the signage, incredible and breathtaking architecture: both wide and tall, ornate and simplistic, somber and celebratory, famous politicians (including the most famous of them all) and Supreme Court justices, food for miles and miles where one has the choice of dining with Congressional staff or casual friends, the infamous Cherry Blossoms that bloom as early as late February (!), lady freedom and all her beauty, Smithsonian museums at every corner, a mall with more nature than shops, the famous steps where MLK spoke his most inspiring words, memorials of presidents, heroes, and wars past, towering monuments with tremendous views of the Potomac and all DC’s glory, powerful speeches etched in stone, and a simply beautiful White House. It’s truly where history, both one’s own and the nation’s, is made.

SIGHTS OF DC

100 YEAR ANNIVERSARY OF JAPANESE CHERRY BLOSSOMS!

40 Year Celebration (2011)!History: President Kennedy – fi rst disability advocacy

champion in the political sphere. 22 days before President Kennedy was assassinated he signed

into law an act creating the first university-based facilities for individuals with DD, in 1963. (See AUCD History Page).

AUCD now represents: 67 UCEDDs, 43 LENDs, and 15 IDDRCs. RFK Center is one of the few with all three

Mission: “To advance policy and practice for and with people with developmental and other disabilities, their families, and their communities by supporting our members in research, education, and service activities that achieve our vision.”

AUCD: HISTORY AND MISSION

AUCD’S 40 YEAR ANNIVERSARY“THE JOURNEY CONTINUES”

Executive Director of AUCD: George Jesien, PhD AUCD on Twitter: AUCDgeojes

President of AUCD: Tony Antosh, EdD (RI UCEDD Director) Policy-Legislative Aff airs Team (In Brief, Advocacy)

Director: Kim Musheno Policy Analyst: Ellen Jensby

Technical Assistance Director: Dawn Rudolph Policy Analysts: Hillary Spears, Rachel Patterson Self-Advocate: Liz Weintraub Data Manager: Corina Miclea Rotsko

RFK’s Very Own Dr. Robert Marion: aka one of the most famous authors in AUCD’s Library!

WHO’S WHO AT AUCD

Began in 2001: 11 Fellows Purpose: expand knowledge/expertise of AUCD network faculty,

staff and/or senior trainees First-hand experience. Exposure to interrelationship among

government, agencies, advocacy organizations, & institutions of higher learning

Provides experiences in development of national policy and legislation related to individuals with disabilities, their families and those who work on their behalf

Broaden knowledge of the AUCD membership, its work and issues

Develop key relationships with other federal level organizations 2013 Fellow Application will be up in May.

See AUCD Disability Policy Page

GOALS OF THE FELLOWSHIP

Assist Legislative Team in writing updates on disability legislation for In Brief

Maintaining/updating AUCD’s Health Reform Hub Attend Consortium of Citizens with Disabilities Task

Force Meetings CCD represents a range of issues: transportation, housing,

Medicaid, Autism, employment, education, etc.)Attend relevant forums/hearings/briefingsParticipate in meetings with Congressional Staff Provide policy updates and TA to UCEDDs/LENDs/IDDRCsAssist in planning for Disability Policy Seminar Draft Press Releases

RESPONSIBILITIES OF FELLOWSHIP

Facilitated Planning of 2011 National Self-Advocacy Summits

Organized the fi rst “Celebrating 10 Years of Fellowship” Panel at 2011 AUCD Conference (Amie Lulinski-Norris @ IL UCEDD).

AUCD Liaison to COCAParticipated in Higher Education Opp. Act Workgroup Provided Oral Testimony to Offi ce of Postsecondary

Ed. Advocated for critical legislation

Rosa’s Law (Prevent Use of the “R” Word) Lifespan Respite Act New Freedom Initiative & Other Medicaid Related policies Combating Autism Reauthorization Act of 2011 !

PAST FELLOWS’ ACCOMPLISHMENTS

ACA SUPREME COURT PROTESTS

Aff ordable Care Act Ticket to Work – Work Incentives Planning Assistance ADA Accessibility Regulations: Pool Compliance Transportation: New Freedom Programs Olmstead Special Litigation (Tom Perez – Assistant AG

of Civil Rights Division of DOJ) VA ADA Settlement Educational Opportunities Section Housing

Education Restraint and Seclusion

Hearing in May NCLB Waivers: 37 States Applied

CRITICAL LEGISLATION

Meeting with Senator Tom Harkin to Present him with Gold Star Award from AUCD’s 2011 40-year Anniversary Conference*

NCIL 30 year anniversary congressional reception Congressional Briefing on Accessible TransportationMeetings with Congressional Staff re: appropriations Congressional Briefing on “Caring for Kids with

Autism Act”Attending Education Budget Briefing with Secretary of

Education: Arne Duncan Supreme Court Hearings

MY EXPERIENCES

Photo courtesy of AUCD

PRESENTING SENATOR HARKIN WITH AUCD 2011 GOLD STAR

AWARD

AUCD Article

See http://harkin.senate.gov/abouttom.cfm, http://www.help.senate.gov/about/chair/

Senator from Iowa, serving in Senate since 1985. House from 1975-1985.

Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee

Early frontrunner for democratic party in 1992 presidential election, but dropped out in support of Bill Clinton.

Most famous for disability advocacy. Introduced the ADA into the Senate Sibling of a brother with a disability Strong Stance against Medicaid Bias Champion for individuals with disabilities:

Community First Choice Option: New York Restraint and Seclusion: will make floor statement Accessible Technology Back to Work Strategies

SENATOR TOM HARKIN

ACCESSIBLE TAXI IN DC

“IN LINE” FOR SUPREME COURT ACA HEARINGS

Community Integration-Capacity Building: ADD Keeping the Promise Report Released by NDRN NY Group Home Exposed in series of NY Times Articles

UCEDD Minority Partnership Projects Dual Eligibles Issue Brief: 15 States issued grants from CMS

Create person-centered models for integrating care for Medicaid-Medicare enrollees. Many states have focused particularly on people with disabilities in their model plans.

WIPA/PABSS Reauthorization: Funding running out in June/Sept. Grants to non-profit organizations and P&As to issue financial planning,

benefits planning to ensure self-suffi ciency of IWD in the workforce. Social Security Administration urges Congress to pass 5-year Reauthorization

Meetings with Congressional Staff on UCEDD Funding Dr. Marion and Ms. Sheryl Dicker Lead the Meetings!

MY PROJECTS

This Year: April 23-25th 2012 Goals/Purpose: “The Seminar off ers [advocates] the

opportunity to come together, become educated on the issues, and take the initiative to speak with [] elected offi cials about what is important to [them].”

Highlights: Capitol Hill Reception (sponsored by Senator Tom Harkin). Awardees: Senator Tom Harkin, Tom Perez (DOJ: Assistant Attorney

General for Civil Rights Division) Sibling Leadership Breakfast Self-Advocate Breakfast Trainee Reception: Michael Gamel-McCormick (HELP Committee

Staff and former president of AUCD and director of DE UCEDD) will speak to trainees from all over the country

Website: http://www.thearc.org/page.aspx?pid=2173

DISABILITY POLICY SEMINAR

Lives Worth Living DVD Kristina’s Blog

AUCD’s Action Center Health Reform Hub Fellowship Page WWW.AUCD.ORG

Everything you need to know about AUCD should be available on the website, and if you have any particular questions

please feel free to contact me.

RESOURCES

Kristina Majewski, J.D. 2012 Disability Policy Leadership Fellowship

Association of University Centers on Disabilities kmajewski@aucd.org

(973) 919-3567 (301) 588 – 8252 (ext. 205)

Connect to AUCD on Facebook and Action Center. Keep up to date on recent disability legislation

through AUCD’s weekly edition of In Brief

CONTACT INFORMATION

“LET’S GET TO WORK”- SENATOR TOM HARKIN