Board of Directors March 7, 2005

Opening

The meeting was called to order at 1:04 p.m. (EST) on Monday, March 7, 2005, by President David Coulter.

Attendance

Members present—David Coulter, president; Valerie Bradley, president-elect; Hank Bersani, vice president; Ann Turnbull, past president; Joan Nyala Cooper; Sharon Coutryer; William Gaventa; Susan Havercamp; Yves Lachapelle; Wendy Nehring; Wayne Silverman; Mark Yeager. Members absent—Joanna Pierson, secretary/treasurer; Susan Foley; Richard Garnett; Robert Horner; Nancy Kirchner; Liz Obermayer; Timothy Shriver. National staff present—M. Doreen Croser. Guest—David Rotholz.

Business

Acceptance of Minutes

S. Coutryer presented the minutes.

M/S/P (H. Bersani, J. Cooper): To accept the January 30, 2005, Board of Directors meeting minutes.

Action Planning Documents: Review and Finalize

M. Yeager presented the documents. The Assembly of Geographic Interests will be required to complete and send in an action plan with information identifying their officers/leaders, annual meeting theme, goals, and other activities. Some minor revisions were identified for the Action Plan and the Flow Chart. M. Yeager will complete the proposed changes. D. Coulter will design and send out a letter to the membership. Each month information regarding Action Plan Proposals will be sent to the membership.

M/S/P (V. Bradley, W. Nehring): To accept the Action Planning procedures and move forward with the process.

Sexuality Fact Sheet

The Board discussed the fact sheet on sexuality. Board members decided to review the fact sheet and send their recommendations/comments to D. Coulter. He volunteered to assemble the information and forward the documents to Leslie Walker-Hirsch, who is chairing the committee.

SABE/Name Issue Discussion

D. Coulter lead the discussion with the Board on how to proceed. The possibility of a grassroots assembly or an action group was needed got the discussion going. Board members also discussed the need to stimulate interest and encourage groups to form around an action plan to move the name issue forward.

2005 Pre-Summit Meeting

V. Bradley reported the preliminary ideas that were discussed by the pre-summit planning committee (V. Bradley, W. Silverman, S. Havercamp, W. Gaventa, and S. Gomez). The events are planned to be cheery, celebratory, and to build excitement for the day. It will include the State of the Association Address, Assembly and Conference meetings, possibly utilizing one room, and lunch (during which we will showcase our future). After lunch, the Action Proposal tables will be set up for small group discussions. The day will also include an awards ceremony with a focus on young professionals.

Adjournment

The meeting was adjourned at 2:30 p.m. (EST).

Respectfully submitted,

Sharon Coutryer, PhD

Acting Secretary

Board of Directors Conference Call March 21, 2005

Opening

The meeting was called to order at 1:04 p.m. (EST) on Monday, March 21, 2005, by President D. Coulter.

Attendance

Members present—David Coulter, president; Valerie Bradley, president-elect; Hank Bersani, vice president; Joanna Pierson, secretary/treasurer; Ann Turnbull, past president; Joan Nyala Cooper; Sharon Coutryer; Susan Foley; Richard Garnett; William Gaventa; Susan Havercamp; Robert Horner; Nancy Kirchner; Yves Lachapelle; Liz Obermayer; Timothy Shriver; Wayne Silverman; Mark Yeager. Members absent—Wendy Nehring, Neil Ross. National staff present—M. Doreen Croser, Maria Alfaro, Ana Montoulieu. Guests—Sharon Gomez, David Rotholz, Diane Morin, Suzie Lassiter.

Acceptance of Minutes

J. Pierson presented the minutes. She thanked S. Coutryer for taking the March 7 Board of Directors minutes.

M/S/P (V. Bradley, H. Bersani): To accept the March 7, 2005, Board of Directors conference call minutes.

Business

President's Remarks

D. Coulter discussed a call he received from Ann Guthrie, (daughter of Robert Guthrie, researcher in PKU). She asked whether we want his papers. This could go to the archives of the field that David Braddock is handling.

Report to the Board

D. Croser noted that a written report was sent to the Board of Directors. The final 2004 financial report for the Association was extremely positive. Board members and other Association leaders are asked to volunteer to call members who have not renewed. The Policy Conference this year was extremely successful, with over 500 participants. SABE has returned as a member of the Alliance for Full Participation. Sponsors are needed for AAMR events at the Alliance Summit in September.

Amicus Curiae Request from the Bazelton Center

D. Croser explained the Bazelton Center's request for AAMR's sign-on to the brief. The case challenges the Protection and Advocacy agencies' access to information from mental health facilities. The Bazelton Center is opposed to this. It was agreed that this is a critical issue.

M/S/P (N. Kirchner, S. Coutryer): To support the Amicus Curiae Brief from the Bazelton center.

Apology Issue

D. Coulter discussed the responses that he received commenting on the letter. Responses were strongly for or strongly opposed to the letter. With no clear consensus, D. Coulter will not publish the letter. There was consensus on the value of knowing the history of the sterilization issue. There was no consensus on whether or not AAMR has responsibility for what was done in the past, if an apology is the appropriate response, or specific actions for the future. It was agreed that AAMR will prepare a position statement or fact sheet on what we have learned from the past and how this leads us into the future planned. This information should be updated on an ongoing basis. Positive actions will be noted that create more than just the future and address the significant issues in the field. Links on the website that tie the history to actual people who are older and have disabilities to give this a personal face are one of the possibilities. There will not be an apology as an event. D. Coulter said there may be an apology statement or statement of regret, depending on how the position statement is written. The Board will review this before it is released.

APRAIS

R. Horner and A. Turnbull recommended that we see the new statement before we consider signing on; AAMR will not sign on without any changes. A letter will be sent by D. Croser on this issue. We will keep framing what we believe and we will work with the group in situations where it is appropriate to our position.

Name Change

V Bradley will form an action group to discuss the name change. As Presidential Advisor, L. Obermayer will be a member of the action group. H. Bersani and N. Kirchner will ask Chapters and Regions to discuss this at their next meetings and conferences. This will be discussed further during the April Board of Directors conference call.

Adjournment

The meeting was adjourned at 2:12 p.m. (EST).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer

Board of Directors Conference Call April 18, 2005

Opening

The meeting was called to order at 1:06 p.m. (EDT) on Monday, April 18, 2005, by President D. Coulter.

Acceptance of Minutes

Joanna Pierson presented the minutes.

M/S/P (N. Kirchner, W. Nehring): To accept the March 21, 2005, Board of Directors conference call minutes.

Attendance

Members present—David Coulter, president; Hank Bersani, vice president; Joanna Pierson, secretary/treasurer; Joan Nyala Cooper; Susan Foley; Richard Garnett; William Gaventa; Susan Havercamp; Robert Horner; Nancy Kirchner; Yves Lachapelle; Wendy Nehring: Wayne Silverman; Mark Yeager. Members absent—Valerie Bradley, president-elect; Ann Turnbull, past president; Sharon Coutryer; Liz Obermayer; Neil Ross; Timothy Shriver. National staff present—M. Doreen Croser, Maria Alfaro, Ana Montoulieu. Guests—Sharon Gomez, Diane Morin. David Rotholz.

Business

Financial report

The March financial figures were reviewed. The monies shown for conference registrations are related to the Policy Forum. This money does not belong to AAMR.

M/S/P (J. Pierson, J. Cooper): To support $150,000 from the reserve funds to be set aside to fund the business plan for the Supports Intensity Scale.

Sexuality Fact Sheet

D. Coulter asked for comments on the draft that was revised to reflect changes requested by the Board. There was much discussion about including information on: sexuality as part of being a human, responsibility of sexual decisions, and the complicated issues around moral procreation. It was decided to ask Leslie Walker Hirsch what she thinks of adding this additional information. The Board also wanted to acknowledge what an excellent job she has done so far.

Strategic Planning Committee Retreat

H. Bersani reported on the Retreat. The Strategic Plan was discussed. The group looked at the mission statement to see whether it reflects what AAMR now does. In discussing this based on the MidWinter Meeting ideas, the fact that our constituents typically have a much broader base, that of developmental disabilities, became apparent. Within this, it is important that people with mental retardation/intellectual disabilities not be neglected in our work. The broader focus of developmental disabilities is one that the group recommends be explored with a wider group of AAMR members to see if this better addresses the question of whom we serve.

Terms of Office of Board Members

J. Pierson explained that with the changes to the Constitution and Bylaws, there will only be four at-large Board members starting July 2005. The Executive Committee discussed various options at the Retreat. The group recommends that all elected at-large Board members stay for their full current term with only one voting member representing each year (there are currently more than one representative per year). In addition, one of the members with 3 years on his/her term will have a year added; this person will have a vote. A lottery will be used to make these determinations.

M/S/P (H. Bersani, W. Silverman): To have a lottery to determine which at-large Board members continue to vote during their terms and to extend the term of one Board member with a 3-year term to a 4-year term.

May 16 Conference Call

This conference call with be held from 12:30 to 2:30 p.m. EDT.

Adjournment

The meeting was adjourned at 2:18 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer

Board of Directors Conference Call May 16, 2005

Opening

The meeting was called to order at 12:39 p.m. (EDT) on Monday, May 16, 2005, by President David Coulter.

Attendance

Members present—David Coulter, president; Valerie Bradley, president-elect; Hank Bersani, vice president; Joanna Pierson, secretary/treasurer; Ann Turnbull, past president; Joan Nyala Cooper; Sharon Coutryer; Richard Garnett; William Gaventa; Susan Havercamp; Nancy Kirchner; Yves Lachapelle; Wendy Nehring; Liz Obermayer; Wayne Silverman; Mark Yeager. Members absent—Susan Foley, Robert Horner, Neil Ross, Timothy Shriver. National staff present—M. Doreen Croser, Maria Alfaro. Guests—Stuart Goldman, Sharon Gomez, Diane Morin, David Rotholz, Steve Taylor, Rud Turnbull.

Acceptance of Minutes

J. Pierson presented the minutes.

M/S/P (V. Bradley, R. Turnbull): To accept the April 18, 2005, Board of Directors conference call minutes.

Business

Membership Committee Report

S. Gomez reported that various subcommittees are looking at young professionals, students, useful and practical information for practitioners to post on the website, and customizing membership packages.

Executive Committee Retreat

H. Bersani discussed the Retreat. Some of the conversation centered around acknowledging that the mission of the organization has shifted to developmental disabilities with an emphasis on mental retardation. From conversations with members, there appears to be a strong sense of support for this change. For these purposes, we will need to define developmental disabilities so that people understand that this is different from the United States government definitions. This will also be discussed at the Fall Summit. There will be a letter to the membership about this change and steps to move forward.

M/S/P (H. Bersani, N. Kirchner): To add “and related developmental disabilities” to “intellectual disabilities” in the mission statement and to better reflect this change in the strategic plan.

Auditor Report

Stuart Goldman presented the audit for 2004. He noted that AAMR has moved as it said it would these past 2 years, having surpluses to enhance the organization. This is particularly impressive considering the world of membership organizations these past few years. It is important that AAMR continues to move on this path in upcoming years. He advised that the Board needs to ensure that it continues to catch any problems early. The Board expressed thanks to D. Croser for her leadership.

M/S/P (J. Pierson, V. Bradley): To accept the 2004 Audit Report.

Terms of Office of Board Members Report

J. Pierson reported that the results of the lottery are as follows: 1 year voting member, Wendy Nehring; 1-year nonvoting member, Timothy Shriver; 2-year voting member, Wayne Silverman; 2-year nonvoting member, Susan Havercamp; 3-year voting member, Mark Yeager; 3-year nonvoting member, Diane Morin; and 4-year voting member, Sharon Gomez.

End-of-Life Issues

R. Turnbull talked to the Board about end-of-life issues related to people who have developmental disabilities. He commented that the proposed AAMR statement is a courageous and valiant effort to address this issue. He particularly likes the emphasis on spirituality as part of making these decisions. He believes that principles that are hidden in the proposed statement that need to be elaborated and highlighted are the concept of dignity; principle of equality or anti-discrimination, that is that people with disabilities should be treated the same as people without disabilities; principle of autonomy. Although self-determination is the concept used by AAMR, autonomy has greater use in the broader community; principle of “do no harm” and the principle protection from harm; principle of due process. In addition, the position statement should address: the issues of what is a persistent vegetative state, situational competence, and the need to include within circle of decision-making all the people who should be there (e.g., circle of friends). D. Coulter will revise the position statement for an e-mail vote by the Board of Directors. The AAMR will think about training related to these issues to enable people to make decisions effectively and organizations to support people through these issues of consent. A fact sheet as a companion piece to the position statement will be pursued. The idea of a national symposium on this issue will be explored. A special issue of Mental Retardation on this topic will be explored. A committee to facilitate these will be formed.

Mental Retardation Journal Name Change Discussion

S. Taylor presented a request to change the name of the journal Mental Retardation. He detailed the reasons for this change. He noted that, increasingly, these concerns are being raised. There was much discussion about potential names. The Board referred this to an appointed committee to include the two editors for a final recommendation to the Board of Directors.

Adjournment

The meeting was adjourned at 2:29 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary/Treasurer