## Board of Directors Midwinter Meeting December 1–2, 2001

### Opening

#### Call to Order

The meeting was called to order at 10:08 a.m. (EDT) on Saturday, December 1, 2001, 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 A. Bersani, Jr.; Brian Clukey; David L. Coulter; Gail Davis; Sharon C. Gomez; Stanley D. Handmaker; Sr. Kathryn Jennings; Genevieve D. Pugh; Alison Alya Reeve; David A. Rotholz; Marsha M. Seltzer, Martha E. Snell; Patricia G. Williams; Mark H. Yeager. Member absent—Neil J. Ross. National staff present—M. Doreen Croser, Paul D. Aitken, Maria A. Alfaro, Bruce Appelgren, Charles J. Helman, Paula A. Hirt. Guests—Sid Blanchard, Joan Cooper, Don Miller, Susan Percy, Russell Rankin, Corry Robinson, Todd Wilson.

M/S/P (H. Bersani, S. Gomez): To accept the minutes of the Board of Directors Conference Call on November 19, 2001, with a change in the secretary–treasurer report of “pervious” to “previous.”

#### Association Status Report

Membership stands at slightly over 7,000 members, with a retention rate of greater than 80%. New member recruitment has been problematic in terms of significantly increasing memberships. The overall membership total has been stable over the last few years. Gail Davis requested an examination of the Canadian membership rate due to the dollar exchange rate, possibly providing a Canadian price for membership and books and conference registration. The Board directed the Finance Committee to discuss the implications and possible implementation issues because Canadian members have a unique position in the Association.

There was a report on training. The Board expressed its appreciation to Paula Hirt for renegotiating the penalty from the Denver hotel from $39,000 to$5,000. For the Orlando conference, the program has been shortened to 3.5 days, with a decreased number of sessions at the same time, a more directed focus for each day, and only having food functions that have sponsorship. Outside firms have been hired to help with the management of the conference, including the exhibits, hotel and travel coordination, and registration. The Local Arrangements Committee, with Charles Kimbers as chair, is already working on increasing regional attendance at the conference. Steve Warren has appointed an ad-hoc committee to report by July on the long-term future of the conference. The Public Policy Seminar will again be conducted jointly with The Arc and AUCD. All three groups will share in the profits for this year's seminar, which will be a tribute to Justin Dart. This next year there will be training institutes on Terminology and Classification (T&C) and the Support Needs Intensity Scale (SNIS) held in Chicago and Baltimore. If particular states are interested in underwriting additional institutes, then these will be held as well. Ruth Luckasson suggested having a training institute paired with the 2003 policy seminar in DC.

In terms of publications, there has been excellent progress on the journals this year, which are now on-line. The Association had to change vendors to accomplish this. In addition, the journal size was changed to increase content and advertising. The on-line version will no longer be free after January 1, 2002. To put old journal issues on-line a special foundation grant would be required because the cost is approximately $7500 per journal year. The journals are being positioned for pay per view. It was noted that the journals contribute significantly to the financial health of the organization. The Board expressed appreciation to Bruce Appelgren for his work. Concerning the project with the University of Kansas, AAMR staff members have specific responsibilities related to this project, including establishing a Special Interest Group (SIG) on technology and locating a chairperson to help organize this SIG. Ideas included involving some of the conference exhibitors who are knowledgeable about technology to assist in this effort. Hank Bersani volunteered to help. During the discussion, it was suggested that Board members could look at ways AAMR can be involved as they write grants for their own organizations. It was suggested that members have a link to RADAR on our organizational websites. The project has the potential to allow members to investigate issues and produce white papers. For now, RADAR is funded for 2 additional years to generate information and start to track policy issues. The Assembly of Regions recommends AAMR publicize RADAR regularly on a listserv with a hyperlink as well as mentioning it in articles in News and Notes. Career Connections will cease operations when the contract ends February 1, 2002. This could be revisited sometime in the future; however, since September 11, it has become much less successful. Webcasting was investigated. AAMR will begin to utilize this technology if there is underwriting and a topic that is appropriate for this technology. The possibility of using it when CEUs are granted for specific training broadcasts and for disseminating project results for grants was discussed. Convention Lockbox Corporate Resolution M/S/P (H. Bersani, S. Gomez): To open a checking account at First National Bank of LaGrange, IL, for the financial management of AAMR's Exhibit Show. International E-Membership M/S/P (C. Ficker Terrill, S. Gomez): To go forward with piloting an international e-membership. ### Reports #### Nominations & Elections Committee Cathy Ficker Terrill reported that election results will be available December 8, 2001. M/S/P (C. Ficker Terrill, M. Yeager): To make appointments to committees as follows: Awards and Fellowship, Hank Bersani and Judy Johnson; Finance, Larry Weishaar and Bill Kiernan; International Activities, Rajinder Koul and Harvey Switzky; Health Promotion, Debbie Lord and Thomas Osinowo; LASI, Nicholas Cobos and Janna Starr; and Publications, Susan Copeland and Leonard Abbeduto. M/S/P (H. Bersani, B. Clukey): To appoint Janna Starr immediately to fill the opening created by the resignation of Michael Holmes from the LASI committee. #### Awards & Fellowship Committee Genny Pugh presented the list of awardees to the Board. Based on the recommendation of the committee, the Board suggested either a lecture series at the conference named after Stanley Herr or a memorial session presentation of information on his contributions to the field. This could be utilized for future memorials as well. M/S/P (H. Bersani, A. Reeve): To elevate 7 individuals to Fellow status: James Conroy, Stan Handmaker, Louis Heifetz, Robert Horner, Roger Stancliffe, David Rotholz, and Mark Yeager. For the discussion of Fellows and passage of this motion, Stan Handmaker, David Rotholz, and Mark Yeager left the meeting room. The Board expressed its appreciation to the committee for all of its hard work in decision-making on Fellow status and Awards recipients. #### The Arc/AAMR Position Statement Committee C. Ficker Terrill reported on the joint committee with The Arc to coordinate policy statements. The committee agreed to a format and then wrote joint statements based on what both organizations already had. In the future AAMR and The Arc can issue joint statements on new topics or separate statements if needed in a particular area. Completed statements were shared with LASI. They will be sent to the Board for comments within the next month. The discussion and sign-off by the Board will occur shortly after that. Joint fact sheets will be developed next. #### Publications Consultants This document was summarized by B. Appelgren and D. Croser. Although there has been significant progress in the journals, staff wants to improve the book publishing program. The consultants' report details how to move forward to accomplish this. B. Appelgren will develop a business plan and associated financial investment cost prior to the next Board meeting. There was discussion about the need to define the relationship between the Acquisitions Editor, the Publications Committee, the Board, and the Book Publications Editor as well as the advantages of AAMR's current peer review system. It was suggested that the current inventory of books be available to sell at regional conferences. M/S/P (C. Ficker Terrill, A. Reeve): That in order to change the way AAMR does business when it comes to publishing books, the Association should: reduce the number of books published each year and focus on marketable titles; begin to use downloadable E-Books, Print-On-Demand, and Short Run printing to mitigate inventory problems; be more proactive in searching for subjects and authors to publish; conduct better research for new titles and have the Publications Committee approve them; raise prices; introduce consumer titles to the marketplace at the pace of one or two a year; utilize the existing network of wholesale distributors to find more markets for AAMR's present and future titles; track AAMR sales by category so that the Board knows what subject matters are selling best; actively involve authors in the marketing scheme; continue to use direct mail marketing, but test and buy out other lists, add full page spreads to every one of the AAMR publications, buy selective ads in other publications when appropriate, and display all books at industry trade shows and symposiums; run prepublication budgets and postpublication profit and loss statements on each title published; and use multiple vendors for design and printing, bidding aggressively for the best price; which would fully implement the recommendations of the consultant's report. #### New Definition of Mental Retardation and 2002 Terminology and Classification R. Luckasson, committee chair, reported that the Committee has coordinated with the SNIS Committee so that the SNIS product can implement the 1992 and 2002 definition. She provided a summary of the definition. The committee focused on definition and classification, not the term to be used. The committee is finalizing the manuscript. It will be delivered to AAMR on January 15. M/S/P (A. Turnbull, C. Ficker Terrill): That the Board endorses and expresses heartfelt appreciation to R. Luckasson and the Terminology and Classification Committee. #### SNIS Project Update D. Rotholz described the work of this committee. The second field test will be conducted January/February. As results are coming in, the sections of the manual will be written. The final version will be published in summer or fall. The potential uses for this manual are extensive. #### Consortium on Language, Image, and Public Education S. Warren reported on the activities of this group, which AAMR co-founded. There will be a guide developed for the media and a study of the current usage of the term mental retardation, which will result in a report published on websites of organizations involved in the consortium. Because of the consensus that part of the issue with the term resides in how children learn the term, the consortium is looking at how to teach children to change their perceptions. The term's use in federal law for benefits and services is an important issue that a smaller group will discuss. The larger group will end after one more meeting in the summer or fall. #### AAMR Action Plan A. Turnbull explained that she will use the input from the AAMR leadership session yesterday to draft additional tasks and actions, which will be distributed for approval at the January meeting. #### Name Change Discussion Support for change is clear. The Board acknowledged the consensus that the term mental retardation is pejorative, and AAMR should try whenever possible not to use it. In making the name change, it is important not to lose the collaborative efforts with other groups. M/S/P (J. Pierson, M. Yeager): To initiate a process that results in a new name for the Association being put forth to the leadership and membership for a vote by the conference in 2003. The Executive Committee will have a plan to the Board for review on the March 2002 conference call. #### SIGN Implementation Committee Recommendations The discussions in both the Conference and Assembly supported the SIGN Implementation Committee recommendations. It was requested that there be a description of each Division and SIG in the membership brochure. M/S/P (J. Pierson, A. Reeve): That the recommendations of the SIGN Implementation Committee are adopted: (a) For the Assembly of Regions, rebates should go directly to state or provincial chapters if there is an active chapter. Where there is no active state or provincial chapter, this rebate should be included in the rebate to the region for the purpose of reactivating the chapter. Otherwise, the national office retains the rebate. There is no need for a formula for the election of the three representatives from the Assembly to the Board of Directors. They can be from any combination of Regions or Chapters. The current formula for number of votes per region on the Assembly will continue as it is. In addition, each state and provincial chapter will have one vote. Only members in attendance as representatives at the Assembly meeting shall have a vote. (b) The Conference of Divisions and SIGs should elect chairs/presidents and presidents-elect in the same manner as proposed for Divisions. Half of the SIGs will vote for both president and president-elect in the first election. The other half of the SIGs will vote for president only in the initial election. The SIGs will participate in AAMR national conference planning on an equal level with Divisions. The Conference should continue to be actively involved in reactivating or closing inactive Divisions. This process should be followed for SIGs as well. Members can join as many Divisions and SIGs on the membership form as they desire. Participation in each will carry a fee of$10. The division of this fee will be 50% to the Division or SIG and 50% to the national office for administration of the Division and SIG lists, the website, and related activities. (c) The AAMR should formalize its interaction with self-advocates. This could include an alliance with national self-advocacy groups such as SABE and People First. It could involve building coalitions at the state and national level.

The Committee did not make specific recommendations on voting, but assumes that Division presidents and SIG chairpersons will each have one vote and that the president-elect or chairperson-elect can vote in the absence of the president or chairperson. Specific decisions on who represents a Chapter and Region should be decided by the Assembly, but names of representatives should only be changed annually to protect the integrity of the voting process.

#### Conference of Divisions

D. Rotholz noted that the leadership manual is completed. It will be revised again when the SIGs are added to the Conference. The guide to services being completed by the Conference is meant to be practical for purchasers of services. It details questions that a person seeking services can ask to a potential provider of services. This is expected to be on the website when completed. The OT/PT Division has been totally inactive. Members were polled and asked what they wanted to do. James Gleason has agreed to take a leadership role to reactivate this division.

M/S/P (D. Rotholz, M. Snell): To appoint James Gleason as the interim president of the OT/PT Division until such time as an election can be held (pending a credential clarification check).

#### Assembly of Regions

M. Yeager reported that the Young Leader Training Institute is something that should be done at the state and regional level as well as at the national level. Nancy Kirchner and Mark Yeager will work on a format for this training. This is in strategic plan and is a high priority. There will be an effort to get Student Chapters involved in the Assembly, perhaps not as voting members.

#### National Committee on Communication

S. Warren noted this draft document was included for Board information. The Board will look at voting on endorsing it and moving it into a position statement with the Arc when it is finalized. It addresses the issue of eligibility for supports and services in speech and communication. The document authors recommend that the current laws be followed, addressing the fact that individuals with severe disabilities are systematically excluded from or severely limited in receiving such services.

#### Health Promotion and Prevention Committee

D. Coulter reported on this year's activities. The Guthrie Award winner lecture will be taped so that it can be transcribed.

#### Fundraising Ideas

It was decided that the Finance Committee be asked to explore a planned giving campaign along with taking a more proactive stance by working with people to do estate planning. Cathy Ficker Terrill offered to arrange for a speaker to discuss this with the Finance Committee. P. Williams initiated a discussion on pooled trusts and offered to work with AAMR on exploring this possibility. It was decided that the Finance Committee will discuss this further and P. Williams will present her findings at the May conference.

D. Croser provided an update on the 800 number. A consultant analyzed the use of the Association's 800 number and believes if AAMR changes from Verizon to Sprint, a 60% savings would be realized. This would allow AAMR to retain this service.

C. Ficker Terrill noted that a holiday bonus has been given to AAMR staff in the past. Because of the current finances, there was discussion about giving an extra day off during the holidays instead. The Board decided to ask D. Croser to exercise her discretion in how to provide extra days off around the holidays to show staff members the Board's appreciation. D. Croser expressed the appreciation of staff for this.

#### Memorial Celebrations Ad Hoc Committee

P. Williams will work with D. Croser to get this group together to discuss what the Association wants to do. Having a memorial page on our website is one idea.