Founded in the 19 th Century Meeting 21 st Century Challenges Region X Annual Meeting Lenox MA October 20, 2003

Why I Joined AAMR

 It was cross disciplinary and represented a wide range of professions, views and orientations  It represented the breadth of the field that I cared about  Whatever the orientation, AAMR members cared deeply about people with disabilities  Debate and dissent was tolerated and encouraged  There was a long history and tradition

Mission of AAMR

    Achieving full societal inclusion and participation of people with intellectual disabilities Advocating for equality, individual dignity and other human rights. Expanding opportunities for choice and self determination Influencing positive attitudes and public awareness by recognizing the contributions of people with intellectual disabilities.

Mission, continued

 Promoting genuine accommodations to expand participation in all aspects of life.  Increasing access to quality health, education, vocational, and other human services and supports.  Aiding families and other caregivers to provide support in the community.  Advancing basic and applied research to prevent or minimize the effects of intellectual disability and to enhance the quality of life.

Mission, continued

     Cultivating and providing leadership in the field. Seeking a diversity of disciplines, cultures, and perspectives in our work Enhancing skills, knowledge, rewards and conditions of people working in the field.

Encouraging promising students to pursue careers in the field of disabilities. Establishing partnerships and strategic alliances with organizations that share our values and goals.

Looking Back

 Century begins with optimism  Moral treatment and notions of asylum  Linkage between cognitive disability and crime/poverty  Great Depression and the eugenics movement  Institutional overcrowding after WWII  1960s -- beginning of reform era

How Far Have We Come

        Public institutional population peaked at 200,000 in 1968 Almost 1/2 of population was under 21 Majority of residents had severe disabilities Only 3 institutions closed between 1960 and 1971 By 1991, 75,000 people lived in institutions Only a fraction of the population was under 21 years Between 1972 and 1991, 59 institutions were closed Another 45 institutions closed by the end of 1995 Now in NE, no facilities in RI, VT, ME, and NH

Changes in AAMR Reflect Changes in the Field

 Institutional Phase:  Members primarily worked in large facilities  Medical division was significant  Structure mirrored facility structure  Deinstitutionalization Phase  Community Division is born  Level of debate and confrontation increases  Community Phase  Self-advocate on the board  DSP special interest group emerges

AAMR: Force for Reform

        ADA Accreditation Briefs in support of deinstitutionalization (e.g., Pennhurst); Braddock’s research Criminal justice/death penalty New definition Consent manual Supports initiative Special interest groups in DSP and health promotion

Challenges Facing AAMR

 Associations are struggling all over the country  People getting information in different ways  Institutions are downsizing affecting traditional membership  Aging membership  Budget cuts

Focus Efforts on Priorities

 Maintain clear mission & purpose  Focus on customer  Identify critical products and & services (classification and definition, Supports Intensity Scale  Streamline structures  Build the next generation of leadership  Enhance website

Steps Taken

 Suspended Rebates  Cut Division & Committee Support  Went to web version of News and Notes  Renegotiated conference contracts  Cut all non-essential expenses  Postponed non-critical activities  Announced personnel reductions

Power of One Campaign

 Make a financial contribution  Sponsor/mentor a new member  Contribute inkind services  Each region and state will hopefully appoint a Power of One Coordinator  Coordinator: Bill Gaventa

Convention Trends

2000 1500 1000 500 0 1998 San Diego 1999 NewOrl 2000 DC 2001 2002 Denver Orlando Paid Total

Membership Trends

7600 7400 7200 7000 6800 6600 6400 6200 6000

5-Year Membership Trend 7575 7484 7511 7048 1998 1999 2000 Year 2001 6619 2002 2003 YTD 5,631

AAMR FYI

 Enhanced Features: Forward to a friend  E-subscription sign up Building information data base Objective Source of Information

Publications

 Book sales increased 256%  Sold 15,000 books  International rights revenues over $22,000  Developed Disability Books Online -

print-on demand, read only, PDF, and other formats

http://www.jaqkar.com/AAMR

Journals

 Highly Ranked  Credible Information Source  Important Asset  Expanded Marketing   International Sales Pay Per View “Goes Live”

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Looking Toward the Future

COOPERATION COORDINATION COLLABORATION

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AAMR

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Arc

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The Council

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AUCD

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NAPAS

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NASDDDS

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NACDD

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ANCOR NADSP SABE

Successful Initiative

 Arc/AAMR/AUCD/UCP Policy Forum  DDQC – Coalition for Quality  AAMR/Arc/UCP Legislative Goals  DD Commissioners Forum  AAMR/Arc/UCP Position Statements  National Research Goals Conference  Amicus Curiae Briefs  Coalition for Citizens with Disabilities

2005 Summit: District of Columbia

FOUNDING PARTNERS AAMR AUCD NAPAS The Council SABE* The Arc US ANCOR NADSP NADDC* NADDDS*

Purpose

      Share information Increase collaboration at the state and local levels Develop a national action agenda for the DD Community. Groundbreaking Collaboration Forum to organize networks around key policy, research and service issues.

Integrate power and influence of all organizations.

Emerging Initiative

     Supports Intensity Scale (SIS) Annual Meeting: Philadelphia SIS for children New Electronic Products & Tools New

ESSENTIAL

Books • Positive Behavior Supports Training   Alternate Assessment Strategies Developing New Leadership  New Adaptive Behavior Scales  Research briefs

New Challenges

      Attracting a new generation of leadership to AAMR and the field in general Providing tools to support and expand more self determined initiatives Support DSPs and the enhancement of their capacities Integrating the power of self-advocates and family members Collaborating with other sister organizations Continuing to provide an important forum for debate, dissent and reform

AAMR is Changing

What Can You Do?

 Get Involved  Put a new face on AAMR  Recruit and mentor new members  Understand the history and significance of AAMR  Develop a supports initiative  Keep the faith!!!!!!!!!!