Founded in the 19th Century
Meeting 21st Century Challenges
Region X Annual Meeting
Lenox MA
October 20, 2003
Why I Joined AAMR
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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
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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 selfdetermination
Influencing positive attitudes and public
awareness by recognizing the contributions of
people with intellectual disabilities.
Mission, continued
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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
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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
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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
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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
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Institutional Phase:
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Deinstitutionalization Phase
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Members primarily worked in large facilities
Medical division was significant
Structure mirrored facility structure
Community Division is born
Level of debate and confrontation increases
Community Phase
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Self-advocate on the board
DSP special interest group emerges
AAMR: Force for Reform
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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
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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
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Maintain clear mission & purpose
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Focus on customer
Identify critical products and & services
(classification and definition, Supports Intensity Scale
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Streamline structures
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Build the next generation of leadership
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Enhance website
Steps Taken
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Suspended Rebates
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Cut Division & Committee Support
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Went to web version of News and Notes
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Renegotiated conference contracts
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Cut all non-essential expenses
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Postponed non-critical activities
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Announced personnel reductions
Power of One Campaign
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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
Paid
Total
2000
1500
1000
500
0
1998
San Diego
1999
NewOrl
2000
DC
2001
2002
Denver Orlando
Membership Trends
5-Year Membership Trend
Number of Members
7575
7484
7600
7400
7200
7000
6800
6600
6400
6200
6000
7511
7048
6619
1998
1999
2000
Year
2001
2002
2003 YTD
5,631
AAMR FYI
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Enhanced Features:
Forward to a friend
E-subscription sign up
Building information data base
Objective Source of Information
Publications
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Book sales increased 256%
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Sold 15,000 books
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International rights revenues over $22,000
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Developed Disability Books Online - print-ondemand, read only, PDF, and other formats
http://www.jaqkar.com/AAMR
Journals
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Highly Ranked
Credible Information Source
Important Asset
Expanded Marketing
International Sales
Pay Per View “Goes Live”
Looking Toward the Future
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COOPERATION
COORDINATION
COLLABORATION
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AAMR
Arc
The Council
AUCD
NAPAS
NASDDDS
NACDD
ANCOR
NADSP
SABE
Successful Initiative
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Arc/AAMR/AUCD/UCP Policy Forum
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DDQC – Coalition for Quality
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AAMR/Arc/UCP Legislative Goals
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DD Commissioners Forum
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AAMR/Arc/UCP Position Statements
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National Research Goals Conference
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Amicus Curiae Briefs
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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
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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
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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
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Attracting a new generation of leadership to AAMR
and the field in general
Providing tools to support and expand more selfdetermined 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?
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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!!!!!!!!!!