## Board of Directors Meeting May 28, 2002

### Opening

The meeting was called to order at 1:25 p.m. (EDT) on Tuesday, May 28, 2002, by President Steven Warren.

#### Attendance

Members present—Steven F. Warren, president; Ruth A Luckasson, president-elect; Ann P. Turnbull, vice president; Joanna L. Pierson, secretary/treasurer; Cathy Ficker Terrill, past president; Hank Bersani, Jr.; Brian Clukey; David L. Coulter; Gail Davis; Sharon C. Gomez; Stanley D. Handmaker; Sr. Kathryn Jennings; Alison Alya Reeve; David A. Rotholz; Marsha M. Seltzer; Martha E. Snell; Mark H. Yeager. Members absent—Genevieve D. Pugh, Neil J. Ross, Patricia G. Williams. National staff present—M. Doreen Croser, Maria A. Alfaro. Guests—Yves Lachapelle, Mark Dubin, Steve Eidelman, William Gaventa, Amy S. Hewitt; Fran Ulrich.

Acceptance of Minutes: J. Pierson presented the May 13 minutes.

M/S/P (C. Ficker Terrill, M. Yeager): To accept the minutes of the Board of Directors conference call on May 13, 2002.

April Financial Status Report: J. Pierson explained the April financial statements. Memberships and the resulting dues are lower than last year. The conference revenues are a significant area of concern this year. The budget calls for 850 attendees, which is 200 greater than are currently registered. Publications are doing very well due to sales of the new 10th edition of the classification products and subscription to the journals. There was significant discussion about the current finances and the need to support our strengths along with making decisions about our weaknesses. The Board will now move from idea sharing of possible solutions to implementing them so that AAMR actually has necessary revenues to survive and grow. This includes what investments we want and need to make for the future as well as short-term solutions that immediately generate revenue. Everyone agreed that this is the most important activity of the Board for the next few months. Specifically mentioned was the need for members to look at ways to utilize AAMR's strengths in dissemination of materials and conducting training workshops as avenues for their organizations to collaborate with the Association, generating revenues for AAMR in the process.

2001 Audit Report: J. Pierson presented the report from Betz and Goldman. She noted that the deficit has actually existed for several years but was not as noticeable because of a significant bequest each year as well as large increases in the investment portfolio. The decrease in the value of investments as well as a significant write-off of older publications contributed to last year's deficit. The journals were the only activity that made money last year. She noted that the Board is now positioned well to begin implementing various revenue enhancing strategies as well as reformatting the conference to generate additional revenues, having spent the last year moving from understanding the deficits of this past year and previous years to discussing and weighing various strategies for addressing the problems.

M/S/P (H. Bersani, A. Reeve): To accept the 2001 auditors' report.

Request for Training Endorsement: D. Croser presented a letter from a group requesting that the AAMR endorse their training. There was much discussion about whether we currently have the capacity to endorse training curricula, if we wish to develop this, and what is our professional accountability when we are asked to review items that we feel are either best practices or, alternatively, are not in the best interests of people with disabilities.

M/S/P (C. Ficker Terrill, A. Reeve): To thank the group that requested endorsement of its curriculum for contacting us but convey to them that AAMR does not have the capacity currently to review and endorse training curriculums.

Letter to the National Research Council: R. Luckasson reviewed the letter to the Social Security Administration (SSA) and endorsement of the National Research Council report to the SSA.

M/S/P (R. Luckasson, A. Reeve): To send a letter to the Social Security Administration endorsing the National Research Council report, Disability Determination for Mental Retardation.

Additional Annual Reports to the Board: Reports were distributed from M. Yeager, for the Assembly of Regions; A. Hewitt, for the Social Work Division; T. Free, for the Nursing Division; L. Walker-Hirsch, for the General Division and the Social/Sexual Concerns SIG; A. Reeve, for Region IV; D. Rotholz, for the Ad Hoc Committee on Supports Needs Assessment; and J. Pierson, as the treasurer, for the Finance Committee, for the SIGN Implementation Committee, and for the Families SIG. The Annual Report to the Board will be posted this year on the website.

Additional New Business: S. Handmaker suggested that AAMR have a task force to look pro-actively at Medicaid because it funds such a significant percentage of services for people who have developmental disabilities. There was an in-depth discussion of how to address this issue. The relationship of the New Freedom Initiative to Medicaid and the need to look at how to advocate related to this in terms of our overall priorities and strategies was discussed, including the fact that both Medicaid and the New Freedom Initiative are state-based in terms of implementation. Although the catalysts for these are at the national level, and AAMR is working with CDD at this level, much of the implementation is at the state level, which would involve State Chapters. A fact sheet on Medicaid will be developed by LASI on this issue for the use of State Chapters. The incoming president will appoint a task force to address this issue because it is one that needs quick AAMR attention.

Health Promotion and Prevention Committee White Paper: D. Coulter reported on the white paper on newborn screening. A. Turnbull recommended that an abstract be developed for the website with a link to the full white paper. This is a model for what should be prepared by Committees, Divisions, and Special Interest Groups for dissemination.

M/S/P (D. Coulter, C. Ficker Terrill): To endorse the Health Promotion and Prevention Committee white paper on newborn screening.

Position Statements Initiative With The Arc: C. Ficker Terrill reported on this coordinated effort. Other groups will be asked to endorse these position statements. A committee of AAMR and The Arc wrote position statements, which were distributed to AAMR leadership for comments. The LASI Committee will be developing fact sheets for each position statement.

M/S/P (C. Ficker Terrill, R. Luckasson): To endorse the joint AAMR and The Arc position statements in principle with the Executive Committee to approve final changes.

### Reports and Action Items

President: A. Turnbull stressed the need to determine the three topics for the Association to address in its strategic planning, which will be included in the conference planning. She would like to hear other ideas as well.

Secretary/Treasurer: J. Pierson thanked the Board in advance for all their work in solving the revenue issues this next year.

Executive Director: D. Croser talked about a proposed Disability Summit for 2005 that she suggested to other organizations. This would be a coordinated effort with other disability groups such as The Arc and AUCD in place of our annual conference. The other Executive Directors are seeking approval for this from their Boards.

M/S/P (M. Yeager, D. Rotholz): To endorse AAMR's participation in the Disability Summit for 2005.

D. Croser discussed the problems with AAMR's current contracts for hotels for future conferences. These were negotiated when AAMR had much larger annual conferences. As a result, a large room block was needed.

M/S/P (S. Handmaker, M. Yeager): To cancel our contract for 2006 with the hotel in Boston.

Assembly of Regions: M. Yeager stated that the name change was discussed and passed. Each Chapter has been asked to seek information this summer from its members on what they believe to be the three highest issues for the Association to address. New officers were elected: M. Yeager as speaker pro tem, A. Reeve, and F. Ulrich to represent the Assembly on the Board. S. Percy was elected to the Nominations and Elections Committee.

Conference of Divisions: D. Rotholz stated that the name change was discussed and passed. Divisions and SIGs were discussed as a place that new initiatives should arise. Each Division president and SIG chair has been asked to seek information this summer from its members on what the three highest issues for the Association to address are. New officers were elected: D. Rotholz as president pro tem, A. Hewitt, and S. Handmaker to represent the Conference on the Board. L. Walker Hirsch was elected to the Nominations and Elections Committee.

### Standing Committees

Health Promotion and Prevention: D. Coulter reported that the committee will discuss how to advocate for the implementation of the Surgeon General's Report. He announced the Guthrie Award winner, Jose Cordero.

International Activities: H. Bersani reported that this committee has a very active listserv. It is holding an Open Forum at this conference.

LASI Committee: C. Ficker Terrill described the LASI process for reviewing the joint position statements. The LASI Committee is starting to assign the responsibility for the development of fact sheets related to these.

Nominations and Elections: C. Ficker Terrill reminded Board members that nominations are due by June 30 for vice president; Board of Directors members at large; all Special Interest Groups and many Divisions, both president and president-elect for many of these as well as committees.

Publications: M. Seltzer reported that the committee is working on the current publications plan.

Archives and Historic Preservation: S. Handmaker reported that this committee has received a grant to complete oral histories on people who lived in institutions and family members of people who lived in institutions.

Human Genome Project Work Group: S. Warren stated that he has sent three requests for funding of this committee's work. The committee will start its work after he locates funding.

Membership Development: The role of this committee and how it works with Chapters was discussed. This committee could provide assistance to Chapters in their activities in recruiting new members and sharing best practices.

SIGN Implementation: J. Pierson reported that the work of this committee is completed. The Board of Directors adopted all recommendations.

Supports Intensity Update on SIS: D. Rotholz noted that the group changed the name based on the Board's request. The second field test is underway. Over 1200 forms have been mailed to date because of the excellent response. The committee expects to complete data collection in June, data analysis in July, and the writing of the manual in August; and to deliver the final product to the National Office by the end of October. Many thanks were expressed to the committee. There is a presentation on SIS at this conference.

Terminology and Classification: R. Luckasson reported that the 10th edition is now available and shared a copy. There were members of this committee who are also members of the SIS Committee, which has allowed for coordination of the two documents. Training sessions are planned in the fall in New Orleans and Washington, DC. The Board applauded the committee's efforts, thanking R. Luckasson in particular. Over 1,000 advance copies have been sold.

Report on the MR Terminology Research Project: S. Schroeder, Director of a Developmental Disabilities Research Center in Saudi Arabia, described the updated report that is to go to the Social Security Administration (SSA) on the definition of mental retardation. The AAMR definition is the most widely used in the United States. There have been very few changes in laws in the definition of mental retardation in the last decade. About half of the states use the AAMR definition, although many use the 1983 definition. It will become SSA's document. It will be broadly disseminated when completed, probably by the end of the summer.

Thank you: The Board applauded S. Warren for all his work this year, including addressing the issue of the name change. All Board members were thanked for their contributions. The Board expressed their appreciation to AAMR staff for all of their hard work.

The meeting was adjourned at 4:40 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer

## Board of Directors Meeting May 31, 2002

### Opening

The meeting was called to order at 5:10 p.m. (EDT) on Friday, May 31, 2002, by President R. Luckasson.

#### Attendance

Members present—Ruth A Luckasson, president; Ann P. Turnbull, president-elect; David L. Coulter, vice president; Joanna L. Pierson, secretary/treasurer; Steven F. Warren, past president; William C. Gaventa; Sharon C. Gomez; Stanley D. Handmaker; Amy S. Hewitt; Yves Lachapelle; Alison Alya Reeve; David A. Rotholz; Martha E. Snell; Mark H. Yeager. Members absent—Robert H. Horner, Genevieve D. Pugh, Frances E. Ulrich. National staff present—M. Doreen Croser, Maria A. Alfaro, Paul Aitken, Bruce Appelgren, Charles J. Helman, Paula Hirt, Lexy Lambert, Anna Montoulieu, Anna Prabhala, Yvette Taylor. Guests/Advisors—Hank A. Bersani, Jr., Brian Clukey, Neil J. Ross.

### Reports

President: R. Luckasson noted that she has appointed M. Dubin to the position of president of the Legal Processes Division to complete P. Williams' unexpired term because P. Williams has requested to step down at this time. Because of D. Coulter's unexpired term on the Board of Directors and his election to vice president, there is a vacancy on the Board.

M/S/P (W. Warren, J. Pierson): To have C. Ficker Terrill serve as a Board member to fill D. Coulter's unexpired term.

Awards and Fellowship Committee: W. Gaventa reported the two recommendations of this committee. The first is that any person applying to be a Fellow should not be on the Board of Directors. The second is that the Board not overturn the committee's recommendations if there is a unanimous decision in the committee.

Report of the Ad Hoc Committee on the Conference: S. Warren reported that they will make significant changes. AAMR is committed for the next two conferences but will explore a Disability Summit in 2005. There is consensus that AAMR should have a meeting every year. It might be leadership oriented and small some years and larger other years. The Board will receive a summary report prior to the next meeting. This report will require Board review. There is agreement that the current format is not working.

Conference Planning Session: D. Rotholz reported that there was a mixed view from the conference in terms of support for significant changes. However, the group is very receptive to shifting to primarily poster sessions.

President's Planning Session: R. Luckasson led the Board in a planning session of AAMR's core constituency, goals, and priorities.

Annual Conference: The annual conference was discussed. The participants for this event are professionals and direct support staff who work for community providers of services for primarily adults; university attendees; currently over 50 students; and approximately 100 Academy members, who do not want to attend plenary sessions but might prefer more sessions that combine research and practice; a few self-advocates who need more assistance to fully participate, local attendees, entrepreneurs, educators, and day attendees. A look at the number of members versus nonmembers attending was discussed as well as emphasizing CEUs for different disciplines by creating program listings for all sessions available for each discipline and having flyers by discipline. Contacting other groups such as educators, the court monitors and masters group, people who work in residential facilities (who now feel AAMR has an antiresidential bias), the developmental disabilities directors in state governments, the protection and advocacy agencies, and the university affiliated programs was discussed. There were comments about the need to help everyone feel welcome. Additional ideas included the use of evidence-based practices, collaboration with other groups, and using personal contacts and networking in other ways to invite others to the conference. The group agreed that the purposes of the Association are to provide practical data; create networking, including through the web; and provide training and education. A beginning list of AAMR's broader constituency includes people who want information, state actors (e.g., directors, staff, budget), and professionals who work in the various disciplines.

Current “hot issues” in the field include the Medicaid Waiver and SSI and SSDI, maintaining quality with budget cuts, recruiting and retaining and training staff, the war on terrorism and its impact on the field, overrepresentation of minorities in special education, the new definition and its implementation, human genome and ethical issues related to genetics research, assistive technology, health promotion, stigma, and inclusion.

D. Croser will distribute to Board members the survey of the membership that was completed several years ago.

D. Rotholz recommended that the Association add a student representative to the Board of Directors, which could be an ex-officio appointment for now, starting the process that would lead to an elected member.

A. Turnbull recommended two possible goals for the year. The first is the active implementation of the Terminology and Classification manual. To create the message that the Board is committed to this manual, the Executive Committee will develop a plan for the implementation of the manual (training, finances, policy). The second is the MR/DD summit scheduled for January 2003. This is co-sponsored by AAMR. It is an invitation-only conference for developing research priorities for the field. Funding agencies will use these as priorities for grants they fund. A role for AAMR members would be to create a task force this fall to gather the data that currently exist on each of the possible goals.

The AAMR could design a proactive data system, putting forth the concept that data should measure goals for success of people (personally satisfying lives, lives of people's choosing) rather than success of programs. The AAMR could develop an annual product or report on this (State of the Lives) and use this as a benchmark for the Association.

R. Luckasson concluded the meeting by stating that the Board must make some tough decisions and solve issues this year.

M/S/P (M. Snell, M. Yeager) at 7:11 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer

## Open Board Forum May 31, 2002

### Presiding: Steve Warren and Ruth Luckasson

Comments from AAMR members in attendance:

• Put something in a National Publication asking for help from the membership. Solicit support from our members.

• That idea runs the risk of causing people concern of the longevity of the organization.

• Look at new marketing strategies that recruit young people.

• Develop new strategies for marketing Generations X & Y.

• Organizations in general are having difficulty recruiting younger members. We need to find the connection.

• Should there be a rate for young professionals for the convention? The Association already has a discounted membership rate.

• The future may not include conventions that cost each individual $1000 to$1500 with airfare, hotel, registration, and food.

• Family barriers make attendance difficult for young professionals with small children.

• Maybe we need more speakers/keynotes from young people.

• Need the overall meeting costs to reduce.

• Need to coordinate our conference with other organizations.

• Need to market the benefits of the Association.

• Recognize the international audience and build upon that in the future. Showcase the international participation.

• Allow people to attend electronically from other parts of the world.

• People need to feel they have a real purpose for attending. Experts should be asked to come as mentors to sessions. Make sessions more interactive.

• Generations X and Y are not about long-term commitments; they don't expect to participate in annual rituals, etc. Perhaps we need to look at the research related to analysis of Generations X and Y.

• Shift to workshops on Wednesday with sessions Thursday through Saturday to save money on airline tickets and hotel.

• Do we know where we are going as an Association? Have we redefined our mission, priorities, and direction?

• What are we doing to keep pace with the major changes in the field?

• Be prepared to ride the roller coaster of change.

• We need to find and define our passion.

• We need to listen to the young people and what they have to say. How do we give young people power, leadership roles, and a sense of belonging?

• The award presentation is deadly dull. It needs to be a party with music and videos and vibrant. It didn't feel celebratory.

• Find ways to sponsor young leaders and solicit their input for future planning.

• We have some young leadership. We need to have young leaders nurture others. We need to solicit the input of young leaders.

• Need to break down old conference “processes.”

• When people are motivated to attend, they will find a way to attend.

• Bigger is not always better.

• 650 are registered for the first International Conference for Direct Care Support. We need to make it inviting and welcoming.

• What strategies is the Association looking at to reduce costs?

• The Association is looking at other options for hotels.

• Look at Las Vegas as an option for a new site.

• Metro areas allow for people to attend for just the day.

• Don't lose current loyal attendees chasing after new people.

• Passion, get it in the organization and the program.

• Look at dates of conference, is it when people are graduating from high school and college?

## Executive Committee Conference Call July 1, 2002

### Opening

The meeting was called to order at 1:03 p.m. (EDT) on Monday, July 1, 2002, by President R. Luckasson.

#### Attendance

Members present—Ruth A Luckasson, president; David Coulter, vice president; Joanna L. Pierson, secretary/treasurer; David Rotholz, Conference of Professional Interests; Mark Yeager, Assembly of Geographic Interests. Members absent—Ann P. Turnbull, president-elect. National staff present—M. Doreen Croser.

### Reports

President: R. Luckasson reported on the Supreme Court decision Atkins v. Virginia, noting that it is a tremendous victory and testament to the hard work of people in the field for over 20 years to obtain this decision. J. Ellis, D. Croser, and she have talked to numerous reporters about the case and the decision. K. Mirick was also recognized for providing community supports for someone who was a convicted murderer (later found innocent) in Virginia. D. Coulter recommended that AAMR have a workshop on forensic issues and the new classification manual. R. Luckasson stated that AAMR declined the Hargrave Amicus request because it is not directly related to people who have cognitive impairments.

There are two trainings scheduled for the 10th edition of the terminology and classification manual in New Orleans and Washington, DC. R. Luckasson will appoint an implementation committee for the new definition. This will include the original committee members along with a few other AAMR members. D. Croser is developing a question and answer for the web page.

The dates for the Executive Committee Retreat were set for August 24 and 25.

Executive Director: D. Croser reported that the Board will have the financial report with revised budget projections by the July conference call. The conference hotel bill is being finalized. In terms of publications, approximately 1000 copies of the 10th edition have sold, and the Association is in the final stages of negotiating an Italian language AJMR. D. Croser noted that membership has declined by 500. She suggested an e-membership that would start this summer and last for 15 months of membership with a rate of $120.00 M/S/P (D. Rotholz, D. Coulter): That AAMR have an e-membership category for$120.

Assembly of Regions: M. Yeager asked when the questionnaire to be sent to all members having them list subject issues for AAMR to address would be available. D. Rotholz noted that this is to be sent during the summer with a September response date.

Discussion of Association Service Priorities: The group discussed the need to attract practitioners who do not see themselves as professionals due to the success of inclusion. The group discussed looking at product sales as opposed to membership for younger professionals, a dissemination product from the national invitational conference next January, what to add to the website. They agreed that much of what is on the website should be available to the public rather than members only as a means of attracting new members. There was discussion of the need to trim expenses along with increasing revenues. Most national associations are now in a position where they need to reduce expenditures significantly.