Board of Directors Conference Call March 15, 2004

Opening

Call to Order

The meeting was called to order at 1:02 p.m. (EST) on Monday, March 15, 2004, by President Ann Turnbull.

Attendance

Members present—Ann Turnbull, president; Valerie Bradley, vice president; Joanna Pierson, secretary/treasurer; Ruth Luckasson, past president; Sharon Coutryer; William Gaventa; Sharon Gomez; Robert Horner; Yves Lachapelle; Suzie Lassiter; Wendy Nehring; Genevieve Pugh; David Rotholz; Timothy Shriver; Frances Ulrich; Patricia Williams. Members absent—David Coulter, president-elect; Amy Hewitt; Tia Nelis; Neil Ross. National staff present—M. Doreen Croser, Ana Montolieu. Guest present—Susan Havercamp.

Business

Acceptance of Minutes

J. Pierson presented the minutes.

M/S/P (D. Rotholz, S. Coutryer): To accept the January 25, 2004, Board of Directors Meeting minutes with additional elaboration of the Conference of Professional Interests report and correction of the Power of One Campaign from $5,000 to $4,500.

M/S/P (W. Nehring, F. Ulrich): To accept the February 23, 2004, Executive Committee Meeting minutes.

CD Reinvestment

J. Pierson described the recommendation from M. Levin, AAMR financial advisor, to invest the $24,000 from the CD that matures March 31, 2004, by purchasing a zero coupon bond.

M/S/P (S. Gomez, D. Rotholz): That AAMR re-invest the proceeds from the maturing Certificate of Deposit by purchasing U.S. Treasury Zero Coupon Bonds to mature in 2016 at a yield of 4.31%.

Division/SIG Budget Parameters

D. Rotholz explained the specifics of the proposed budget parameters. This has been discussed among the Division presidents and SIG chairs. The proposal would reimburse certain expenses for up to the amount of the budget allocation with rollover of unused funds into the next year. It would not impact monies raised by Divisions and SIGs themselves.

M/S/P (W. Gaventa, S. Coutryer): That AAMR accept the proposed Division/SIG

AAMR Representative to IASSID Council

D. Croser reported that Robert Schalock has represented AAMR for one term with this group. The group asked that he be allowed to continue in this role.

M/S/P (F. Ulrich, S. Gomez): To reappoint R. Schalock for an additional 4-year term as AAMR's representative to the IASSID Council.

Amicus Curiae Protocol

R. Luckasson described the protocol, which puts our limited resources at the highest legal level where we can have the most impact, provides for a speedy process, consistency with our positions, and sufficient information from the requester to be available to appropriately make a decision.

M/S/P (W. Gaventa, S. Gomez): That AAMR utilize the proposed amicus curiae protocol.

Mercury Consensus Statement

D. Croser asked the Board to sign on to this statement. It is endorsed by many health care professionals groups. It is congruent with AAMR's activities in this area.

M/S/P (V. Bradley, S. Coutryer): That AAMR adopt the Mercury Consensus Statement.

Right to Communicate Resolution from TASH

D. Croser was asked by TASH that AAMR consider signing this comprehensive resolution. The resolution endorses facilitated communication as part of the right to communicate. In the past AAMR has not taken a position on facilitated communication due to its controversial nature in terms of its success. After much discission, the decision was made to hold final consideration until the May Board meeting. In advance of this meeting, R. Horner will send an analysis to the Board.

Fundraising and Finance Committee Restructuring

J. Pierson reported the recommendations. The first is that the Finance Committee will dissolve in June as per the bylaws revisions. There will then be three committees to work on fundraising. The Power of One Campaign will continue with W. Gaventa as chair. The Endowment Committee will continue with Hank Mann as chair. A new Sponsorship Committee will be convened to seek sponsors of AAMR activities and publications and to interest members in involving AAMR in their grants and other income-generating activities.

M/S/P (V. Bradley, D. Rotholz): To accept the recommendations of the Fundraising and Finance Committee Restructuring Report.

Report on Proposed 2006 Meeting in Montreal

Y. Lachapelle reported that the theme will be social inclusion. The dates are May 2–5, 2006, based on hotel availability. The conference is an AAMR initiative but also serves as a joint event with international organizations. He has contacted local organizations to assist in the arrangements.

Update on September 2005 Disability Summit

V. Bradley and D. Croser reported on the Disability Summit, which will be held September 20–24, 2005, at the Washington Hilton. There will be publicity about this shortly. V. Bradley is organizing the program committee for the conference. She said the committee is looking at encouraging sponsoring partners to have premeetings on the state level prior to the national meeting, thereby attending the meeting with an understanding of what they wish to learn for their state. The group plans to canvas the membership to determine the abiding issues to cover. AAMR will need to determine how to structure our organizational part (e.g., awards, meetings). This is being planned as a milestone meeting.

ABAI Project Update

R. Horner updated the Board about the work on the new adaptive behavior tool development. The committee members are focusing their work, looking at cultural sensitivity as important to include in the resulting instrument. They have submitted one grant to NIDRR and are planning to submit one to NIH.

Direct Support Professionals Initiative

V. Bradley and S. Gomez reported on progress in this arena. At the MidWinter Meeting, there was discussion of AAMR potentially moving into certification of direct support professionals. However, the National Alliance of Direct Support, a coalition in which AAMR participates, is working on this certification. The AAMR will continue to work with them. The idea of having links on the AAMR website to direct support professionals training on various issues is a possibility mentioned in the Board discussion. Training in state of the art techniques will be AAMR's emphasis for this group. The Membership Committee recommended an initiative for front-line supervisors and program coordinators. The group that met to discuss the direct support initiative will be expanded to begin looking at the feasiblity of this possible initiative.

SIS Implementation Update

V. Bradley reported that a developmental disabilities council is interested in purchasing the SIS to use as a tool for its state. The self-advocates had some issues with some of the language. This will be looked at in terms of how to guide people administering the SIS to involve self-advocates meaningfully. It was noted that this is important for the Association to address in the development of all instruments. Recently, there was a conference call with the authors of the SIS. Those interested will join the implementation committee. To date the group has concentrated on scheduling for presentation at important meetings and conferences over the next year. The group is examining ways to help states that may use this tool for resource allocation. An early adopters initiative is underway. The group is thinking about training others who can extend the training network on the SIS. Sales are good to date.

Transplantation Summary Report

D. Croser provided a report as an FYI on this initiative in which AAMR participated. There will be another report in June when there are additional data.

Philadelphia Conference

The preliminary program is on the webpage. National office staff met with the Local Arrangements Committee this past week.

Finances

D. Croser reported that the audit is complete. The overall surplus was $482,000 with $191,000 in operating surplus.

Revised Reorganization Proposal

Board members were sent a revised proposal for discussion and voting during the May conference call. Before that time, Board members should send any comments for revision to M. Yeager.

Adjournment

The meeting was adjourned at 2:08 p.m. (EST).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer

Executive Committee Conference Call April 19, 2004

Opening

Call to Order

The meeting was called to order at 1:04 p.m. (EDT) on Monday, April 19, 2004, by President Ann Turnbull.

Attendance

Members present—Ann Turnbull, president; David Coulter, president-elect; Valerie Bradley, vice president; Joanna Pierson, secretary/treasurer; David Rotholz, Conference of Professional Interests; Suzie Lassiter, Assembly of Geographic Interests. National staff present—M. Doreen Croser. Guests—Ruth Luckasson, past president; Mark Yeager; Hank Bersani.

Business

Reorganization Proposal Analysis and Discussion

M. Yeager elaborated the reorganization proposal and asked for comments to revise it. Much of the conference call was spent discussing this proposal, which is based on several factors, including the fact that in the past couple of years quick decisions were needed. This suggests the need for management expertise on the Board along with a less complex governance structure. The proposal would restructure the Regions, Chapters, Divisions, and Special Interest Groups and create a smaller Board that allows for making key decisions quickly and with broad support. Although the governance will be simplified, the revisions to structure will create many chances for people to be involved programmatically and ways to create future leadership. There will be a nine member Board with the President as Chair. There will not be a separate Executive Committee or Finance Committee. The Nominations and Elections Committee will look at certain credentials for nominees to the Board, including management and fiscal expertise, service to AAMR, diversity, and expertise in the field. M. Yeager will present a revised proposal to be voted on at the May Board conference call. He also will detail changes to the Constitution and Bylaws. The Conference and Assembly will discuss their ideas in how they can contribute programmatically to the Association at the Philadelphia meeting.

Financial Statements

To date, there are $15,000 in conference sponsorships. In terms of revenue, membership is lower, publications are higher, conference registrations are lower, and subscriptions significantly higher than last year. The Association has more available in its cash accounts than at this time last year.

Dates for MidWinter Leadership Meeting

January 28– 30, 2005, was selected as the time for the next MidWinter Leadership Meeting.

SIS Sales and Implementation

D. Croser reported that additional marketing materials are being designed. V. Bradley reported John Ashbaugh is working on states using the SIS as well as a web-based version of the tool. There was discussion of a certificate for people attending sessions to become SIS trainers. Guidance for surveyors who are self-advocates is being developed. Jim Thompson will lead a focus group with self-advocates at the Philadelphia conference on this issue. The SIS will be implemented in Boulder, Colorado, on July 1. Some states are interested in utilizing the SIS.

Research Reports Newsletter

D. Coulter discussed his concern that the proposed Health Research Reports Newsletter may not be the best way for AAMR to promote research and requested a broader discussion of how the Association should be involved in this area. A. Turnbull noted the broad interest in evidence-based analyses of research in education and other areas and suggested that this was an area where AAMR could take the lead. D. Coulter noted that AAMR is already involved with its Evidence-Based Health Promotion Guidelines project (to be reported at the 2004 convention). The Executive Committee agreed to suspend further action on the proposed Health Research Reports Newsletter and to explore the broader context through which AAMR can be involved in promoting research. The Executive Committee discussed research as another possible “niche area” for AAMR to emphasize. A. Turnbull will appoint a committee to address this.

Philadelphia 2004 Conference

D. Coulter wants the Assembly and Conference to rally people to attend the conference and will send something to them encouraging this.

Montreal Conference

There was discussion about the importance of determining the specifics of AAMR's involvement in the conference and the development of a business plan for the conference. This will determine what level of support in terms of money and staff time that AAMR will invest. H. Bersani, Y. Lachappelle, D. Croser, and J. Pierson will discuss this and present a report at the May Board meeting.

Stripling Case Memorandum

AAMR was asked to sign on to this Amicus brief. R. Luckasson recused herself from the discussion and vote.

M/S/P (D. Rotholz, V. Bradley): After reviewing information received on this case and pending receipt of the final brief to sign on to the Stripling Case.

Direct Support Initiative

V. Bradley reported that the National Alliance of Direct Support is already working on this initiative. AAMR will look at training of front-line supervisors and developing related product lines. The current committee will be expanded to discuss this. Implications for future membership are important in this initiative.

Pennhurst Group

Recently, the Pennhurst Group asked to have an exhibit booth. This came after months of discussions with them. Because of their late response, they were told that instead they could be a sponsor if interested and would then have a link on the AAMR website.

Governmental Affairs Seminar

Medicaid was a big topic of discussion at the seminar. AAMR will look at forming an ad hoc committee on Medicaid policy, education policy, work, transition, and housing.

TASH Resolution

AAMR has made an offer to TASH that we jointly have an informal committee with Robert Horner and Rud Turnbull as AAMR representatives to work through to a mutually agreeable resolution. The issue for AAMR is the resolution's statements about facilitated communication.

Adjournment

The meeting was adjourned at 3:04 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer

Board of Directors Conference Call May 17, 2004

Opening

Call to order

The meeting was called to order at 1:02 p.m. (EDT) on Monday, May 17, 2004, by President Ann Turnbull.

Attendance

Members present—Ann Turnbull, president; David Coulter, president-elect; Valerie Bradley, vice president; Joanna Pierson, Secretary/Treasurer; Sharon Coutryer; William Gaventa: Sharon Gomez; Robert Horner; Yves Lachapelle; Suzie Lassiter; Wendy Nehring; David Rotholz; Frances Ulrich. Members absent—Ruth Luckasson, past president; Amy Hewitt; Tia Nelis; Genevieve Pugh; Neil Ross; Timothy Shriver; Patricia Williams. National staff present—M. Doreen Croser; Ana Montolieu. Guests present—Hank Bersani, Stuart Goldman, Susan Havercamp, Wayne Silverman, Mark Yeager.

Business

Acceptance of Minutes

Joanna Pierson presented the minutes.

M/S/P (F. Ulrich, S. Gomez): To accept the March 15, 2004, Board of Directors Meeting minutes.

M/S/P (D. Rotholz, W. Nehring): To accept the April 19, 2004, Executive Committee Meeting minutes.

Auditor Report

Stuart Goldman, from Betz and Goldman, LLP, explained the audit report. He noted that 2003 reverses the trend of 9 years of operating losses to a year with an operating surplus of $379,027. Other one-time revenue, including the sale of the Adaptive Behavior Scale, brought the surplus to an even higher total. He credited the Executive Committee and others in creating the changes that brought about this turnaround. He noted that this reversal was not without pain to the organization. Less staff were expected to do the same amount of work as previous years. He noted the decline in memberships, which parallels that of other organizations. In future years the Association must find innovative ways to generate funds because there will be no annual meeting to absorb about $140,000 in administrative costs that were paid for by the conference. The leadership and members need to support AAMR by obtaining grants and other funding to support the Association. The leadership also needs to think of ways to continue to interest nonmember supporters, such as subscribers in purchasing AAMR products. A. Turnbull acknowledged R. Luckasson for her leadership on the budget and thanked D. Croser for the belt tightening that has occurred by national office staff.

M/S/P (J. Pierson, D. Coulter): To accept the auditor's report.

March 2004 Financial Statements

J. Pierson reviewed the statements, noting the decrease in membership dues revenue particularly in the area of payments to join Divisions and Special Interest Groups. Publications continue to do well. Cash flow is good, as is to be expected at this time of the year. D. Rotholz expressed serious concerns about the status of the 2004 finances based on the lack of strong revenues for the Philadelphia conference and the need to have more publications in the pipeline for publishing in the near future.

M/S/P (Bradley, Rotholz): Unanimously to accept the March 2004 financial statements.

Reorganization Proposal

Mark Yeager presented the AAMR reorganization proposal. He summarized the changes. There would be a nine member Board of Directors, with four at large members and five officers chaired by the President. The Conference and Assembly would be reconfigured to have a more significant impact on vision and programs and services of the Association. There would be work groups with assigned tasks and clear foci. There will need to be related changes to the Constitution and Bylaws, which Mark Yeager has begun to prepare.

There was much discussion of the proposal. The need for active Ad Hoc Work Groups was supported along with the need to have a clear focus on leadership development. The ability of current Divisions, Special Interest Groups, and Regions to form groups if they wish to continue to work together is part of the flexibility of the new structure. The proposal will not change the management of the publications.

The changes will be presented to the Assembly and Conference at the Philadelphia conference.

It was recommended that Mark Yeager continue to work to finalize the Constitution and Bylaws changes with a committee.

Mark Yeager was thanked for his reorganization proposal and the work it entailed.

M/S/P (Gomez, Ulrich): Unanimously to adopt the recommended proposal for reorganization.

AAMR/The Arc Position Statements

Doreen Croser presented the position statements that are being revised by The Arc. It was decided that an AAMR member would be assigned as a contact person with The Arc and to comment on each of the statements that have proposed changes. The changes will be presented to the Board at the Philadelphia conference Board meeting. It also was agreed that AAMR needs an ongoing process to continue to meet with The Arc as partners in revising position statements in the future.

M/S/P (Pierson, Gomez): Unanimously to respond to The Arc on these position statements and to set up a new policy group to work with The Arc in a collaborative process on an ongoing basis.

Membership Future's Committee Recommendations

Sharon Gomez summarized the committee's report, which recommends a single category of active member with reduced dues for new members, members earning under $25,000, and corporate members. Dual membership with other associations should be explored further. The committee will continue to work on front line supervisor credentialing.

M/S/P (Gomez, Coulter): Unanimously to accept the report and recommendations of the Membership Future's Committee and establish work groups for implementation of each of these recommendations (acknowledging that some of these work groups already exist).

Health Promotion and Prevention Committee Recommendations

Wendy Nehring shared the report of the committee, including the creation of a Health Promotion Coordinating Committee that would coordinate work on the eight issues listed in the report. There was discussion of the report and the use of evidence based practice in research along with the need for AAMR to be a resource in this area. The report was accepted with enthusiasm.

Fundraising Recommendations

Doreen Croser and Joanna Pierson commented on the need for Board members to be part of creating grants and sponsorship opportunities for the Association. They acknowledged that our past history demonstrates that traditional fundraising may not be the best route for AAMR to secure its future.

National Joint Committee Report

Doreen Croser reported that Mary Ann Romski represents AAMR on this group and submits an annual report to the Board. The report was included in the Board packet for this meeting.

Update on New Committees

Ann Turnbull described three new committees. One committee will meet to follow through on the 2003 National Goals Conference recommendations. Its members will include Charlie Lakin, Steve Eidelman, David Coulter, and Doreen Croser. AAMR is looking at publishing the conference proceedings. A second committee chaired by David Coulter will examine ways to enhance AAMR's activities related to research, looking at whether AAMR should disseminate research information in formats other than the current journals. The third committee is on individualized funding. Chaired by Rud Turnbull and Chas Moseley, this group will move AAMR's policy agenda forward in this area.

Conference of Professional Interests

David Rotholz reported that the June meeting of the Conference will focus on the AAMR reorganization proposal and how Divisions and Special Interest Groups see their roles evolving in the future. Division and Special Interest Group budgets will be discussed as well.

Assembly of Geographic Interests

Suzie Lassiter reported that the June meeting of the Assembly will also focus on the AAMR reorganization proposal. The group will discuss how Chapters and Regions wish to move forward.

Eugenics Issue Discussion

Ann Turnbull led a discussion about the past eugenics policies and the need for groups such as AAMR to comment on this issue. The group decided to mention this is various addresses at the Philadelphia conference as well as laying an ethical groundwork that makes it clear that we continue to move in another direction as a field.

Adjournment

The meeting was adjourned at 3:06 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer

Board of Directors Meeting June 4, 2004

Opening

The meeting was called to order at 1:36 p.m. (EDT) on Friday, June 4, 2004, by President David Coulter.

Attendance

Members Present—David Coulter, President; Valerie Bradley, President-Elect; Joanna Pierson, Secretary/Treasurer; Ann Turnbull, Past President; Sharon Coutryer; William Gaventa; Susan Havercamp; Nancy Kirchner; Yves Lachapelle; Wendy Nehring; Timothy Shriver; Wayne Silverman; Mark Yeager. Members Absent—Hank Bersani, Vice President; Joan Nyala Cooper; Susan Foley; Richard Garnett; Robert Horner; Neil Ross. National Staff Present—M. Doreen Croser, Paul Aitken, Maria Alfaro, Bruce Appelgren, Michele Gagnon, Beatriz Margallo, Ana Montolieu, Anu Prabhala, Yvette Taylor.

Association Business

Acceptance of Minutes

Joanna Pierson presented the minutes.

M/S/P (Bradley, Coutryer): Unanimously to accept the May 17, 2004, Board of Directors Meeting minutes.

Discussion of AAMR Issues, Challenges, and Directions

Joanna Pierson reviewed the activities and initiatives of the Association for the past few years, including those with which AAMR is moving forward at present. Ann Turnbull stressed the importance of individual responsibility and involvement of AAMR leadership and members to continue to move AAMR forward.

Next Steps in Reorganization

The changes in AAMR structure were discussed at the Assembly and Conference at their meetings this week. Mark Yeager presented at both meetings. There was much discussion. Mark Yeager will work with a committee to discuss specifics of the reorganization, and information including a question and answer sheet will be distributed to further elaborate the changes as well as elaborate how these mesh with AAMR's vision and niche.

2004 Conference

Doreen Croser reported that it was a successful conference. Its location in a population center of AAMR members and the use of a theme may both have contributed to this success.

2005 Summit

Valerie Bradley chairs the program committee for this collaboration between virtually all of the national groups representing people with developmental disabilities. There will be an emphasis on state teams collaborating, meeting prior to the Summit and then carrying the message back to their states after the conference. AAMR will have time before and after the actual summit to conduct AAMR business such as the awards ceremony.

2006 Conference

Yves Lachapelle presented a business plan including a budget for hosting the 2006 conference in Montreal. The theme is “Achieving Social Inclusion and Social Participation. The dates are May 2–5, 2006.

M/S/P (Bradley, Havercamp): Unanimously that Montreal is the site of the 2006 AAMR Conference pursuant to national office staff reviewing the budget and logistics.

Canadian Representative to the Board

Doreen Croser reported that there was no nominee for this position last year.

M/S/P (Gaventa, Silverman): Unanimously to continue Yves Lachapelle on the Board of Directors for an additional year as the Canadian representative.

Health Promotion and Prevention Committee

Wendy Nehring reported that the pre-conference on Tuesday was successful. The committee plans to have proceedings available from this event.

Committee on Evidence Based Practices and Implementation of the 2003 Research Goals

David Coulter is creating a committee, chaired by Mary Cerreto, to determine AAMR's role in supporting research and interaction with other groups to forward this agenda.

Committee on Implementation of the 2002 Definition

Robert Schalock will chair this committee, which is planning another edition of the Classification Manual for 2007–2008, timed to coincide with the new adaptive behavior scale.

Supports Intensity Scale (SIS)

Valerie Bradley discussed the activities related to the SIS, including looking at the health and behavioral scales which are not currently included in the scoring, designing a companion interviewer guide to include self-advocates as respondents, and completing a pilot study in Kansas this summer. A significant amount of income in this year's budget is based on sales of the SIS; marketing to additional groups besides states is important to generating necessary sales this year. Jim Thompson is interested in developing an SIS for children.

Eugenics Issue Discussion

It was agreed that the appropriate response would be to acknowledge our regret at the practices of the past, presenting an educational focus so that people understand abuses that occurred in the past, along with a look at how much the field has changed and how we must move forward in the future. Linkage to self-advocates on this issue is important. David Coulter will appoint a committee to work on this issue.

Adjournment

The meeting was adjourned at 5:09 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer

Executive Committee Conference Call June 21, 2004

Opening

The meeting was called to order at 1:04 p.m. (EDT) on Monday, June 21, 2004, by President David Coulter.

Attendance

Members Present—David Coulter, President; Hank Bersani, Vice President; Joanna Pierson, Secretary/Treasurer; Mark Yeager, Conference of Professional Interests. National Staff Present—M. Doreen Croser; Ana Montoulieu. Members Absent—Valerie Bradley, President-Elect; Nancy Kirchner, Assembly of Geographic Interests.

Association Business

Debriefing on 2004 Convention

David Coulter described the Philadelphia Conference as a vibrant meeting. Attendees felt there were presentations of substance. Self-advocacy and direct support staff sessions were well attended. The atmosphere was upbeat.

We had more than the total of registrations that we projected in the budget. Having an identifiable theme was helpful, as was having the conference in a metropolitan area with many AAMR members.

2006 Convention in Montreal

Doreen Croser has been discussing the specifics with Yves Lachapelle, and they are getting ready to sign a hotel contract. It will be an international symposium on inclusion of which AAMR is the sponsor. Other groups will be asked to support the conference as well. It will consist of a two day meeting with one additional day of AAMR leadership meetings. Yves Lachapelle will do the local logistics.

There was a discussion on future years conferences and an agreement to have a presentation at the MidWinter Meeting on what is happening with similar conferences to enable the Board to finalize plans on future activities in this area.

Behavioral Supports Position Statements

Doreen Croser will talk to The Arc about how AAMR should be involved in the revisions process.

AAMR Reorganization Implementation

It was agreed to have a full Executive Committee Conference Call on July 6, 2004 to discuss this.

Adjournment

The meeting was adjourned at 2:06 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer

Board of Directors Conference Call Meeting July 19, 2004

Opening

President David Coulter called the meeting to order at 1:05 PM (EDST) on Monday, July 19, 2004.

Attendance

Members present—David Coulter, President; Val Bradley, President-Elect; Hank Bersani, Vice President; Liz Obermayer, Presidential Advisor; Bill Gaventa; Susan Havercamp; Robert Horner; Wayne Silverman; Nancy Kirchner; Joan Cooper; Susan Foley; Mark Yeager; Sharon Coutryer; Richard Garnett. National Staff present—Doreen Croser, Ana Montoulieu. Members Absent—Joanna Pierson, Secretary/Treasurer; Ann Turnbull, Past President; Wendy Nehring; Yves Lachappelle; Tim Shriver.

Association Business

Introduction of Liz Obermayer

David Coulter has asked Liz Obermeyer to serve as his Presidential Advisor. Liz is pleased to have this opportunity and wants to work with the Board to increase the role of self-advocates in AAMR.

Acceptance of Minutes

M/S/P (Bersani, Coutryer): Unanimously to accept the June 4, 2004, Board of Directors meeting minutes.

M/S/P (Gaventa, Bersani): Unanimously to accept the June 21, 2004, Executive Committee meeting minutes.

New Business

May 2004 financial statements

Doreen Croser reviewed the financial statements and explained our financial position in May 2004 relative to May 2003. Several key points were that membership has continued to drop. All Board members will receive lists of members who have not renewed so that they can make a personal pitch. Publication revenues are ahead of projections, but SIS sales are behind projections. The conference appears to have broken even, due in large part to Wendy Nehring's efforts with the successful pre-conference symposium. A detailed financial report of the conference will be included in next month's financial statements.

M/S/P (Bradley, Coutryer): Unanimously to accept the financial reports.

Awards and Fellowships

There are two vacancies on Awards and Fellowships Committee.

M/S/P (Bradley, Garnett): Unanimously to appoint Rose Sevcik and Thomas Fish as new members of the Awards and Fellowship Committee.

Hank Bersani will become Board liaison to this committee, necessitating a member be appointed to fill his unexpired term.

M/S/P (Bersani, Coutryer): With one abstention, to appoint Sheryl Larson to the Awards and Fellowship Committee to fill Hank Bersani's unexpired term, pending her willingness to serve.

Journal Data Sharing Policy

Rob Horner reviewed the background of this proposed policy and recommendations from the committee. The Board appreciated the hard work of the committee and generally supported the proposal. Several points were sent back to the committee for further clarification, including incorporating into the policy notification to junior authors of lead author not sharing data, having editors of AAMR journals review the final policy draft, and reviewing any potential legal issues with publishing names in the journal reflecting that an author did not cooperate with data sharing and the sanctions against him or her. This will be discussed further at next Board meeting

SIS update

Val Bradley's group is moving ahead with several projects to increase inter-rater reliability and improve training for people interviewing self advocates directly. Mike Wehmeyer is working on a cross validation study in Kansas. Susan Foley suggested getting researchers to use SIS as part of NIDDR grant applications.

Reorganization Plan Letter

The letter David Coulter drafted for the general membership about the re-organization plan received compliments from members of the Board. It will go out immediately. Nancy Kirchner and Mark Yeager will send information in support of David Coulter's letter to the Conference of Professional Interests and the Assembly of Geographic Interests. The material, such as the RFP for new groups etc., has taken longer than expected to develop. It should be ready by the end of the week. Some of this information may be included in the memo that Mark Yeager and Nancy Kirchner will send to the Assembly and Conference. Val Bradley will be sending anther letter to the general membership next month.

Strategic Planning

Hank Bersani will do some further revisions to the Proposed Strategic Plan. Based on Liz Obermayer's input about the role of self-advocates in research, David appointed Hank Bersani to chair an Ad Hoc Committee on Participatory Action Research. Liz Obermayer agreed to serve on the committee.

Continuing Business

2005 Alliance Summit Update

Information is on the AAMR website and planning is going well.

2006 Montreal Annual Meeting

Doreen Croser went to Montreal to view the site and will be sending additional information to the Board as it becomes available.

Adjournment

The meeting adjourned at 2:05 p.m. (EDST).

Respectfully submitted on Behalf of Joanna L. Pierson,

Nancy Kirchner, LCSW, FAAMR

Speaker Pro Tempore of the Assembly of Geographic Interests

Executive Committee Conference Call August 16, 2004

Opening

The meeting was called to order at 1:05 p.m. (EDT) on Monday, August 16, 2004, by President David Coulter.

Attendance

Members Present—David Coulter, President; Valerie Bradley, President-Elect; Hank Bersani, Vice President; Joanna Pierson, Secretary/ Treasurer; Mark Yeager, Conference of Professional Interests; Nancy Kirchner, Assembly of Geographic Interests. National Staff Present—M. Doreen Croser, Ana Montoulieu, Paul Aitken. Guest Present—Ann Turnbull, Past President.

Association Business

Financial Status Discussion

Joanna Pierson reported that the Association will take out a loan later and for less money than last year. The one concern is the SIS income projection. The problem is not the sales, but rather the high income projection in the first year of the publication. This should suggest lessons for future years budgeting. Membership is slightly low. There was discussion of the need for leaders to contact non-renewed members. We are continuing to better our financial picture.

Reorganization Plan Implementation

David Coulter reported that the response to his letter on the reorganization plan was primarily positive. He received some ideas and questions. Mark Yeager has created an action plan and a Question and Answer Sheet that clarifies the questions that have been posed to date, and the details of the process for starting a new group. The next step is to have this information on the website and communicate more about the details to the membership of the Association.

Strategic Plan

Valerie Bradley has noted where we are with all components of the current strategic plan. Hank Bersani will send a proposed plan so that the Executive Committee can comment before it is distributed to the Board for the September meeting.

MidWinter Leadership Meeting

This will be held at the Crystal City Hyatt the last weekend in January 2005. It will focus on the reorganization and how to implement it. The Executive Committee will hold a Retreat in March to act on what happens at the MidWinter Leadership Meeting.

Awards in 2005

We will continue to present awards. For the 2005 Summit this will happen on the day before the full summit meeting. One idea is to have a cocktail reception the night before so that many people are able to attend. We will need a sponsor for this type of event.

Adjournment

The meeting was adjourned at 2:03 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer