Founded in the 19Founded in the 19thth Century CenturyMeeting 21Meeting 21stst Century Challenges Century Challenges

Region X Annual MeetingRegion X Annual MeetingLenox MALenox MA

October 20, 2003October 20, 2003

Why I Joined AAMRWhy I Joined AAMR

It was cross disciplinary and represented a It was cross disciplinary and represented a wide range of professions, views and wide range of professions, views and orientationsorientations

It represented the breadth of the field that I It represented the breadth of the field that I cared aboutcared about

Whatever the orientation, AAMR members Whatever the orientation, AAMR members cared deeply about people with disabilitiescared deeply about people with disabilities

Debate and dissent was tolerated and Debate and dissent was tolerated and encouragedencouraged

There was a long history and traditionThere was a long history and tradition

Mission of AAMRMission of AAMR Achieving full societal inclusion and participationAchieving full societal inclusion and participation

of people with intellectual disabilitiesof people with intellectual disabilities Advocating for equality, individual dignity and Advocating for equality, individual dignity and

other human rights. other human rights. Expanding opportunities for choice and self-Expanding opportunities for choice and self-

determinationdetermination Influencing positive attitudes and public awareness Influencing positive attitudes and public awareness

by recognizing the contributions of people with by recognizing the contributions of people with intellectual disabilities. intellectual disabilities.

Mission, continuedMission, continued

Promoting genuine accommodations to expand Promoting genuine accommodations to expand participation in all aspects of life. participation in all aspects of life.

Increasing access to quality health, education, Increasing access to quality health, education, vocational, and other human services and supports. vocational, and other human services and supports.

Aiding families and other caregivers to provide Aiding families and other caregivers to provide support in the community. support in the community.

Advancing basic and applied research to prevent or Advancing basic and applied research to prevent or minimize the effects of intellectual disability and to minimize the effects of intellectual disability and to enhance the quality of life. enhance the quality of life.

Mission, continuedMission, continued

Cultivating and providing leadership in the field. Cultivating and providing leadership in the field. Seeking a diversity of disciplines, cultures, and Seeking a diversity of disciplines, cultures, and

perspectives in our workperspectives in our work Enhancing skills, knowledge, rewards and conditions Enhancing skills, knowledge, rewards and conditions

of people working in the field.of people working in the field. Encouraging promising students to pursue careers in Encouraging promising students to pursue careers in

the field of disabilities. the field of disabilities. Establishing partnerships and strategic alliances with Establishing partnerships and strategic alliances with

organizations that share our values and goals. organizations that share our values and goals.

Looking BackLooking Back

Century begins with optimismCentury begins with optimism Moral treatment and notions of asylumMoral treatment and notions of asylum Linkage between cognitive disability and Linkage between cognitive disability and

crime/povertycrime/poverty Great Depression and the eugenics Great Depression and the eugenics

movementmovement Institutional overcrowding after WWIIInstitutional overcrowding after WWII 1960s -- beginning of reform era1960s -- beginning of reform era

How Far Have We ComeHow Far Have We Come Public institutional population peaked at 200,000 in Public institutional population peaked at 200,000 in

19681968 Almost 1/2 of population was under 21 Almost 1/2 of population was under 21 Majority of residents had severe disabilitiesMajority of residents had severe disabilities Only 3 institutions closed between 1960 and 1971 By Only 3 institutions closed between 1960 and 1971 By

1991, 75,000 people lived in institutions1991, 75,000 people lived in institutions Only a fraction of the population was under 21 yearsOnly a fraction of the population was under 21 years Between 1972 and 1991, 59 institutions were closedBetween 1972 and 1991, 59 institutions were closed Another 45 institutions closed by the end of 1995Another 45 institutions closed by the end of 1995 Now in NE, no facilities in RI, VT, ME, and NHNow in NE, no facilities in RI, VT, ME, and NH

Changes in AAMR Reflect Changes Changes in AAMR Reflect Changes in the Fieldin the Field

Institutional Phase:Institutional Phase: Members primarily worked in large facilitiesMembers primarily worked in large facilities Medical division was significantMedical division was significant Structure mirrored facility structureStructure mirrored facility structure

Deinstitutionalization PhaseDeinstitutionalization Phase Community Division is bornCommunity Division is born Level of debate and confrontation increasesLevel of debate and confrontation increases

Community PhaseCommunity Phase Self-advocate on the board Self-advocate on the board DSP special interest group emergesDSP special interest group emerges

AAMR: Force for ReformAAMR: Force for Reform ADAADA AccreditationAccreditation Briefs in support of deinstitutionalization (e.g., Briefs in support of deinstitutionalization (e.g.,

Pennhurst); Braddock’s researchPennhurst); Braddock’s research Criminal justice/death penaltyCriminal justice/death penalty New definitionNew definition Consent manual Consent manual Supports initiative Supports initiative Special interest groups in DSP and health promotionSpecial interest groups in DSP and health promotion

Associations are struggling all over the Associations are struggling all over the countrycountry

People getting information in different waysPeople getting information in different ways Institutions are downsizing affecting Institutions are downsizing affecting

traditional membershiptraditional membership Aging membershipAging membership Budget cutsBudget cuts

Challenges Facing AAMRChallenges Facing AAMR

Focus Efforts on PrioritiesFocus Efforts on Priorities Maintain clear mission & purposeMaintain clear mission & purpose

Focus on customerFocus on customer

Identify critical products and & services Identify critical products and & services

(classification and definition, Supports Intensity Scale(classification and definition, Supports Intensity Scale

Streamline structuresStreamline structures

Build the next generation of leadershipBuild the next generation of leadership

Enhance websiteEnhance website

Steps TakenSteps Taken Suspended RebatesSuspended Rebates

Cut Division & Committee SupportCut Division & Committee Support

Went to web version of News and NotesWent to web version of News and Notes

Renegotiated conference contractsRenegotiated conference contracts

Cut all non-essential expenses Cut all non-essential expenses

Postponed non-critical activitiesPostponed non-critical activities

Announced personnel reductionsAnnounced personnel reductions

Power of One CampaignPower of One Campaign

Make a financial contributionMake a financial contribution Sponsor/mentor a new memberSponsor/mentor a new member Contribute inkind servicesContribute inkind services Each region and state will hopefully appoint a Each region and state will hopefully appoint a

Power of One CoordinatorPower of One Coordinator Coordinator: Bill GaventaCoordinator: Bill Gaventa

0

500

1000

1500

2000

1999 NewOrl

2000DC

2001 2002 Denver Orlando

1998 San Diego

PaidTotal

Convention TrendsConvention Trends

75757484 7511

7048

6619

600062006400660068007000720074007600

Nu

mb

er

of

Me

mb

ers

1998 1999 2000 2001 2002

2003 YTD

5,631

Year

5-Year Membership Trend

Membership TrendsMembership Trends

Enhanced Features:Enhanced Features: Forward to a friend Forward to a friend

E-subscription sign upE-subscription sign up

Building information data baseBuilding information data base Objective Source of InformationObjective Source of Information

AAMR FYIAAMR FYI

Book sales increased 256% Book sales increased 256%

Sold 15,000 booksSold 15,000 books

International rights revenues over $22,000International rights revenues over $22,000

Developed Disability Books Online - Developed Disability Books Online - print-on-print-on-

demand, read only, PDF, and other formats demand, read only, PDF, and other formats

http://www.jaqkar.com/AAMR http://www.jaqkar.com/AAMR

PublicationsPublications

Highly Ranked Highly Ranked Credible Information SourceCredible Information Source Important AssetImportant Asset Expanded MarketingExpanded Marketing International SalesInternational Sales Pay Per View Pay Per View “Goes Live”“Goes Live”

JournalsJournals

COOPERATION COOPERATION COORDINATION COORDINATION COLLABORATIONCOLLABORATION

AAMRAAMR ArcArc The CouncilThe Council AUCDAUCD NAPASNAPAS NASDDDSNASDDDS NACDDNACDD ANCORANCOR NADSPNADSP SABESABE

Looking Toward the FutureLooking Toward the Future

Arc/AAMR/AUCD/UCP Policy ForumArc/AAMR/AUCD/UCP Policy Forum

DDQC – Coalition for QualityDDQC – Coalition for Quality

AAMR/Arc/UCP Legislative GoalsAAMR/Arc/UCP Legislative Goals

DD Commissioners ForumDD Commissioners Forum

AAMR/Arc/UCP Position Statements AAMR/Arc/UCP Position Statements

National Research Goals ConferenceNational Research Goals Conference

Amicus Curiae BriefsAmicus Curiae Briefs

Coalition for Citizens with DisabilitiesCoalition for Citizens with Disabilities

Successful InitiativeSuccessful Initiative

FOUNDING PARTNERSFOUNDING PARTNERS

AAMRAAMR The Arc USThe Arc US

AUCDAUCD ANCORANCOR

NAPASNAPAS NADSPNADSP

The CouncilThe Council NADDC*NADDC*

SABE*SABE* NADDDS*NADDDS*

2005 Summit: District of Columbia2005 Summit: District of Columbia

PurposePurpose

Share informationShare information Increase collaboration at the state and local Increase collaboration at the state and local

levelslevels Develop a national action agenda for the Develop a national action agenda for the

DD Community. DD Community. Groundbreaking CollaborationGroundbreaking Collaboration Forum to organize networks around key Forum to organize networks around key

policy, research and service issues.policy, research and service issues. Integrate power and influence of Integrate power and influence of all organizations.all organizations.

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

Tools Tools New New ESSENTIALESSENTIAL Books Books

• Positive Behavior Supports Training Positive Behavior Supports Training Alternate Assessment StrategiesAlternate Assessment Strategies Developing New Leadership Developing New Leadership New Adaptive Behavior ScalesNew Adaptive Behavior Scales Research briefsResearch briefs

Emerging InitiativeEmerging Initiative

New ChallengesNew Challenges

Attracting a new generation of leadership to AAMR Attracting a new generation of leadership to AAMR and the field in generaland the field in general

Providing tools to support and expand more self-Providing tools to support and expand more self-determined initiativesdetermined initiatives

Support DSPs and the enhancement of their Support DSPs and the enhancement of their capacitiescapacities

Integrating the power of self-advocates and family Integrating the power of self-advocates and family membersmembers

Collaborating with other sister organizationsCollaborating with other sister organizations Continuing to provide an important forum for debate, Continuing to provide an important forum for debate,

dissent and reformdissent and reform

AAMR is ChangingAAMR is Changing

What Can You Do?What Can You Do?

Get InvolvedGet Involved Put a new face on AAMRPut a new face on AAMR Recruit and mentor new membersRecruit and mentor new members Understand the history and significance of Understand the history and significance of

AAMRAAMR Develop a supports initiativeDevelop a supports initiative Keep the faith!!!!!!!!!!Keep the faith!!!!!!!!!!