Founded in the 19 th Century Meeting 21 st Century Challenges Region X Annual Meeting Lenox MA

1. A A M R Founded in the 19th Century Meeting 21st Century Challenges Region X Annual Meeting Lenox MA October 20, 2003

2. 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

3. Mission of AAMR • Achieving full societal inclusion and participationof 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.

4. 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.

5. 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.

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. 2000 Paid 1500 Total 1000 500 0 1998 San Diego 1999 NewOrl 2001 2002 Denver Orlando 2000 DC Convention Trends

15. Membership Trends 5-Year Membership Trend 7575 7511 7484 7600 7400 7048 7200 7000 Number of Members 6619 6800 6600 6400 6200 6000 2001 1998 1999 2000 • YTD • 5,631 Year

16. AAMR FYI • Enhanced Features: Forward to a friend E-subscription sign up Building information data base • Objective Source of Information

17. 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

18. Journals • Highly Ranked • Credible Information Source • Important Asset • Expanded Marketing • International Sales • Pay Per View “Goes Live”

19. COOPERATION COORDINATION COLLABORATION AAMR Arc The Council AUCD NAPAS NASDDDS NACDD ANCOR NADSP SABE Looking Toward the Future

20. 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

21. 2005 Summit: District of Columbia FOUNDING PARTNERS AAMR The Arc US AUCD ANCOR NAPAS NADSP The Council NADDC* SABE* NADDDS*

22. 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.

23. 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

24. 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

25. AAMR is Changing

26. 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!!!!!!!!!!