Board of Directors Conference Call, July 16, 2001

Opening

Call to Order

The meeting was called to order at 1:05 p.m. (EDT) on Friday, July 16, 2001, by President Steven Warren.

Attendance

Members present–Steven F. Warren,, president; Ann P. Turnbull, vice president; Joanna L. Pierson, Secretary/Treasurer; Cathy Ficker Terrill, past president; Hank Bersani Jr.; David L. Coulter; Gail Davis; Sharon C. Gomez; Stanley D. Handmaker; Kathryn Jennings; Genevieve D. Pugh; Alison Alya Reeve; David A. Rotholz; Marsha M. Seltzer; Martha E. Snell; Patricia G. Williams. Members absent–Ruth A Luckasson, president-elect; Brian Clukey; Neil J. Ross; Mark Yeager. National staff present: M. Doreen Croser, Maria A. Alfaro

M/S/P (S. Gomez, D. Rotholz): To accept the minutes of the Board of Directors Open Forum in Denver, CO on June 1, 2001.

M/S/P (D. Rotholz, G. Pugh): To accept the minutes of the Board of Directors meeting in Denver on June 1, 2001.

M/S/P (D. Rotholz, H. Bersani): To accept the minutes of the Executive Committee conference call on July 10 with the addition, under attendance, of the list of members absent along with the members present.

Officers' and Executive Director's Reports

President: S. Warren provided a history of what has occurred on the name change issue. After the Denver AAMR Conference, he started a correspondence with The Arc President Karen Staley. She requested that the two organizations move forward together on this issue. The specific request was for AAMR to postpone its activity on this for a few months, at least until after the meeting of Consortium on Language, Image, and Public Education in October. Warren recommended that the AAMR Board hold off on formally moving to change our name until the Board of Directors conference call in November. If the Board moves forward then, this still allows for discussion of the Assembly and Conference in December, not significantly changing the current schedule. The Board responded by brining up several issues. The first was the impact of a name change on the journals and the need to involve the journal editors and others involved in Association publications in the discussion of a name change. The second was the need to communicate to members about what has occurred to date as well as the fact that the delay in the process is based on the desire to work cooperatively with The Arc and the Consortium on Language. The third was the impact of any name change on terminology if the new name of AAMR substitutes another term for mental retardation. The fourth was the importance of a public education effort related to acceptance of and respect for people who have mental retardation, whether or not the term changes. As a result of the discussion, the Board decided what information about this issue will appear in News & Notes. This will include details of the Open Forum at the Denver Conference, how the Board will move forward, and how AAMR is working with The Arc. The straw vote of the Board on the term cognitive developmental disability will be reported with a request for input from members.

S. Warren noted that committee appointments and liaison assignments are completed. He further reported on the Human Genome Initiative—AAMR, The Arc, and AAUAP have a working group on this issue. There will be a speaker on this topic at the December Mid-Winter Meeting.

President-Elect: R. Luckasson was not at the meeting.

Secretary-Treasurer: J. Pierson gave Board members a copy of the May financial report.

M/S/P (D. Coulter, A. Turnbull): To accept the financial report.

The June statement will have projections for the year and most of the finances related to the conference. This will be a more accurate document to use to make decisions on expenditures and possible income sources.

Vice-President: A. Turnbull reported that the convention planning team is looking at a speaker from outside the field who would be an excellent attendance draw. If anyone has any ideas, they are asked to suggest names to R. Luckasson.

Executive Director: D. Croser announced that the Self-Advocacy Committee leadership has resigned. At the September Board meeting we will discuss new members as well as the organization of the committee and topics for their discussion. She also reported that the Surgeon General's office is planning a conference on mental retardation the second weekend in December. They have solicited ideas from AAMR on possible speakers and participants. Although a summary of the Atlas Project was included in Board handouts, in the interest of time it was not reviewed. Finally, she reported that a grant written by C. Ficker Terrill, J. Pierson, C. Helman, and P. Hirt on Resource Coordination was submitted to the Administration on Developmental Disabilities.

Report of the Assembly of Regions

M. Yeager was not on the Board conference call. However, there was a correction to the Assembly of Regions minutes submitted to the Board. R. Schalock is Co-Chair of the Consortium on Language, Image, and Public Education. With this correction,

M/S/P (A. Reeve, S. Gomez): To accept the minutes for both Assembly of Regions and Assembly of Regions and Chapter Presidents Meetings for May 29, 2001.

Report of the Conference of Divisions

M/S/P (D. Rotholz, S. Gomez): To accept the Conference of Divisions Meeting minutes for May 29, 2001.

Committee Reports

SIGN Implementation: J. Pierson reported that the committee has a conference call in September to continue its discussions.

Business

Tandem Mass Spectrometry

D. Coulter asked for Board support of tandem mass spectrometry screening. This screening of newborns would detect many conditions, enabling earlier treatment. Several past Guthrie Award winners have asked for support on this issue. The motion is timely since some federal agencies are considering funding for this screening. The support of AAMR would demonstrate interest in this by people in the field.

M/S/P (D. Coulter, M. Seltzer): To declare that AAMR supports universal newborn screening for inborn errors of metabolism utilizing tandem mass spectrometry and recommends that all states include this technology in their screening programs.

Request to Create a Genetics Special Interest Group

S. Handmaker requested Board action on this petition. There are 104 members who have signed the petition to create a Genetics Special Interest Group. Genetics is specifically mentioned as part of the current strategic plan. There is leadership who would move quickly on specific activities for the group.

M/S/P (S. Handmaker, S. Gomez): To create a Genetics Special Interest Group. D. Coulter suggests a special reception in Orlando. Congratulations are issued to the new group.

Add a New Goal to Our 2002 Legislative Goals: D. Croser presented the request from AAMR member C. Gargille to add a goal to the 2002 AAMR Legislative Goals for economic justice for persons with disabilities. The proposal included with this goal discusses the benefits of capital ownership for people with disabilities. The proposal is very detailed, and the Board felt it required more extensive review. The information will be forwarded to the LASI Committee to evaluate.

Adjournment

The meeting was adjourned at 2:14 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary-Treasurer

Executive Committee Conference Call, August 20, 2001

Opening

Call to Order

The meeting was called to order at 1:04 p.m. (EDT) on Monday, August 20, 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; David A. Rotholz, Conference of Divisions, Mark H. Yeager, Assembly of Regions. National staff present: M. Doreen Croser, Paula A. Hirt, Maria A. Alfaro

Officers' and Executive Director's Reports

President: S. Warren discussed the name change, which will be a major topic of discussion at the Executive Committee Retreat in September as well as at the Midwinter Meeting in December. To enable everyone to be fully informed on this, the representatives from both the Assembly of Regions and the Conference of Divisions will be invited to all the Board discussions on the name change at the Midwinter Meeting. A. Turnbull suggested that the discussion of the name change consist of problem-solving on an issue with the particular name selected. The debate should be structured so as to move systematically through each of the important issues. There also was discussion about the importance of selecting a name that leads the Association forward rather than having people feel regret about the selection 6 months after the process is completed. S. Warren then discussed the Winter Board meeting agenda, which will be determined at the Executive Committee Retreat. At the retreat discussion will include the name change, the Midwinter Board meeting agenda, finances of the Association (including possible projects and services), and the “conference of the future” or how the AAMR national conference will look in 5 years. He announced that on October 31 in Washington, DC, there will be an organizational meeting on the human genome initiative.

President-Elect: R. Luckasson announced that the theme for the national conference is “Rich and Resilient Lives.” The Call for Papers is posted on the website and was included with the latest edition of Mental Retardation. Disney Institute has sent her a proposal with various options for presentations. Other presentations are being pursued as well. R. Luckasson reported on a document that was sent to the Executive Committee for this conference call. It details aspects of the meeting that have proposed changes as well as a schedule for the Orlando national conference. In addition, Paula Hirt reported that she has sent a proposal to the Orlando hotel that includes a 35% reduction in the current contract. This would significantly reduce the obligated room block, which in turn would decrease the number of meeting rooms available for sessions. She is awaiting a response from the hotel. In addition, locating sponsorship and support for various events and sessions is important financially to the success of the conference.

Vice-President: A. Turnbull reported that both she and R. Luckasson attended the Region V Conference in San Antonio. It was a very successful meeting.

Secretary–Treasurer: J. Pierson reported that there is a projected deficit for this year of approximately $280,000. At the September Retreat, the Executive Committee will examine what we want to invest in as an Association in terms of products and services that will generate income in the future, what services and activities we see as necessary to break even within a particular year, and how specifically to decrease the current deficits. D. Croser noted that a staff person has left and will not be replaced. Losing her will have a significant impact on the national conference in Orlando. D. Rotholz offered to work with P. Hirt to enable Division presidents to assume more responsibility for work on the conference planning to assist staff during this time. It was noted that other staff positions might be lost in the future, which will impact other activities.

Executive Director: D. Croser announced that the new AJMR Editor has now started.

The new functional assessment scale is completed. How to publish this will be a discussion item at the September retreat.

Assembly of Regions

M. Yeager reported that he has received e-mails concerning the name change, which he will share at the retreat.

Conference of Divisions

D. Rotholz reported that each Division and Special Interest Group was sent a copy of the Consumers' Guide to Services asking for their participation. He anticipates a preliminary report completed for the Midwinter Meeting.

Adjournment

The meeting was adjourned at 1:56 p.m. EDT.

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary–Treasurer

Board of Directors Conference Call, September 24, 2001

Opening

Call to Order

The meeting was called to order at 1:05 p.m. (EDT) on Monday, September 24, 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 Bersani Jr.; David L. Coulter; Gail Davis; Sharon C. Gomez; Stanley D. Handmaker; Genevieve D. Pugh; David A. Rotholz; Marsha M. Seltzer; Martha E. Snell; Patricia G. Williams; Mark H. Yeager. Members Absent: Brian Clukey; Sr. Kathryn Jennings; Alison Alya Reeve; Neil J. Ross. National staff present—M. Doreen Croser, Maria A. Alfaro.

Approval of Minutes

M/S/P (C. Ficker Terrill, H. Bersani): To accept the minutes of the Board of Directors conference call on July 16, 2001.

M/S/P (M. Snell, H. Bersani): To accept the minutes of the Executive Committee conference call on August 20, 2001, with the change in V. from Region IV to Region V.

Officers' and Executive Director's Reports

President: S. Warren announced that there will be a conference call with The Arc to coordinate activity on the name change. There is a cast your vote on the web page. The planning group of four organizations, which includes AAMR, AAUAP, The Arc, and MR Research Directors Organization, will meet on October 31 to develop a strategy for this effort. The Executive Committee Retreat has been rescheduled for November 7.

S. Warren reported that Allen Guttmacher, NIH, is a confirmed speaker for the AAMR Midwinter Meeting. Numerous important issues will be discussed at that meeting. A schedule will be sent shortly.

Steve Warren described conference calls he had with chairs and liaisons on their plans for this year. Two nominations have been made for the Health Promotions Committee: Robert Arendt and Judy Levy.

M/S/P (S. Handmaker, D. Coulter): To appoint Robert Arendt and Judy Levy to the committee.

S. Warren reported that an Amicus Curiae Request (Keene v. Brigham & Women's Hospital) has been received. P. Williams presented this case, which is a civil matter, so it would be an unusual case for AAMR to support. The AAMR is not being asked for support related to the amount of money requested in the lawsuit. The lower court ruled that Dylan Keene has no understanding of his quality of life so he would not understand lost pleasures. As a result, the court found that he should receive no monetary compensation for this loss. The issue then is for the value of an individual with disabilities to be recognized by the courts. According to different Board members, this is an issue that has arisen in numerous cases. The usual process is for the Litigation Committee to make a recommendation to the Board of Directors on cases. The initial decision, therefore, was deferred to them. The Board of Directors or the Executive Committee can then support or oppose the decision of this committee.

President-Elect: R. Luckasson gave an Orlando convention update. The deadline for the call for papers was September 21. Paula Hirt is still negotiating with the hotel to decrease the room block.

Secretary–Treasurer: J. Pierson noted that Board members had each received a copy of the August financial report.

M/S/P (A. Turnbull, M. Yeager): To accept the financial report. This report is not significantly different in its bottom line than the last ones. Board members were urged to think about how the Association can generate additional income and income sources.

M/S/P (J. Pierson, C. Ficker-Terrill): To open a bank account at Douglas County Bank in Lawrence, Kansas, for the purpose of managing our journal subscription receipts.

Executive Director: D. Croser reported that the ATLAS Project has been approved but not funded. She noted that the Regional Meetings that she has gone to so far this year have not been well attended. We need to think about how to collaborate with other groups. This downturn does not portend significantly lower numbers for the Orlando Conference. She reported that the staff members are now developing the 2002 budget. Staff have developed a federal indirect rate and submitted it to the federal government. If approved, it would become our automatic rate for federal grants.

Past President: C. Ficker Terrill reported that many excellent candidates were nominated by Nominations and Elections Committee. The election ballot will be mailed October 1. She also discussed the Arc/AAMR Position Statement Project, which has been a wonderful opportunity for the two national organizations to collaborate on joint policy statements. It is currently approximately 90% complete. All statements not yet completed are in final draft form. C. Ficker Terrill is hoping for a final version in the next 14 days. Then the approval process will start within each organization.

Business

The Board of Directors noted in sorrow the deaths of Gunnar Dybwad and Stan Herr. The Board gratefully acknowledges their contributions to the field. There will be an article in News & Notes for both Stan Herr and Gunnar Dybwad.

M/S/P (C. Ficker Terrill, D. Coulter): To express our regrets and condolences to the families.

Adjournment

The meeting was adjourned at 1:57 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary–Treasurer

Executive Committee Conference Call, October 15, 2001

Opening

Call to Order

The meeting was called to order at 1:03 p.m. (EDT) on Monday, October 15, 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. Members absent—David A. Rotholz, Mark Yeager. National staff present — M. Doreen Croser; Maria A. Alfaro.

Reports

President: S. Warren reviewed his News & Notes column on the name change. He believes AAMR needs to move forward on the name change with other national organizations, with the change being connected to a larger agenda. He proposed a discussion with the leadership at the Midwinter Meeting to discuss and explain this. The rest of the Executive Committee agreed. Because of the importance of the impact on federal entitlements and legislation, the media, and the criminal justice system, the need to move forward carefully was cited. All officers did agree that the Association is overdue for a name change and that there are missed chances or opportunity costs if we do not change the term, including the fact that there are people who do not join AAMR because of the use of mental retardation in the name.

President-elect: R. Luckasson reported that the number of submissions of papers for the conference is significantly higher than the previous couple of years. P. Hirt has reduced the room block at the hotel. This will decrease the number of meeting rooms available for sessions.

Vice-President: A. Turnbull suggested that each objective in the strategic plan have one person or committee responsible to enable more progress to be made. She is focusing on tasks that need attention now with the idea that amendments can be made to the plan at the Executive Committee Retreat.

Secretary–Treasurer: J. Pierson stated that the bottom line of the financial report sent prior to the meeting is not significantly different than before. She asked Executive Committee members to think about income sources for the retreat (such as corporate sponsors, institutes, and grants). It was agreed that we need a financial action plan.

Executive Director: D. Croser reviewed the retreat agenda. The morning will consist of information on all of AAMR's initiatives. The accountant will talk about the state of the Association and what he believes we need to do. The afternoon will be a discussion of what we need to do for the next 2 years to be successful.

Adjournment

The meeting was adjourned at 2:02 p.m.

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary–Treasurer

Board of Directors Conference Call, November 19, 2001

Opening

Call to Order

The meeting was called to order at 1:05 p.m. (EDT) on Monday, November 19, 2001, by President Steven Warren.

Attendance

Members present—Steven F. Warren, president; Ruth A Luckasson, president-elect; Joanna L. Pierson, secretary–treasurer; Hank Bersani, Jr.; 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. Members absent: Ann P. Turnbull, vice-president; Cathy Ficker Terrill, past president; Brian Clukey; Neil J. Ross. National staff present: M. Doreen Croser, Maria A. Alfaro.

M/S/P (S. Gomez, S. Handmaker): To accept the minutes of the Board of Directors conference call on September 24, 2001.

M/S/P (M. Snell, A. Reeve): To accept the minutes of the Executive Committee conference call on October 15, 2001.

Officers' and Executive Director's Reports

President: S. Warren reported on the Executive Committee Retreat held on November 7, 2001. Issues discussed included the conference and training, publications, membership, finances, and other AAMR initiatives. The future of the convention was an issue because of the declining attendance. He has appointed an ad hoc committee to report by June on how to have a highly effective conference that is cost-effective. The development of an e-membership for a cost slightly lower than the current full membership cost was discussed. A consultant looked at our book publishing, designing an excellent report that elaborates ways to increase the revenues and the impact of the publishing program. Bruce Appelgren will be putting together a specific proposal by the end of January. The group decided to eliminate the Career Connections program for now because it is not generating sufficient revenues. The contract will be terminated when it comes up for renewal on February 1. Next year's finances appear brighter than this year's.

A planning committee on the Human Genome Project met on October 31. The groups involved are: AAMR, MR/DD Research Centers Directors, AUCD, and The Arc. A work plan was completed. The working group will include scientists, ethicists, and consumers. This effort will take 2 years and be funded by groups other than the associations involved. Travis Thompson will chair this group, and the Genetics SIG will be involved.

An Annual Giving Letter will be received by Fellows and Life members shortly. S. Warren hopes everyone will respond to this letter by giving a gift to AAMR.

The Litigation Decision Committee had a conference call about the Amicus Curiae request (Keene v. Brigham & Women's Hospital) that P. Williams presented at the September Board of Directors conference call and referred to this committee. The committee recommends that P. Williams continue with this case on behalf of the Association. If other groups sign on to this, the committee will recommend, after a review of the final brief, that this brief be supported by the Board.

The Midwinter Board Meeting will focus on updating the strategic plan and discussing the proposed name change.

President-Elect: R. Luckasson provided an update on the 2002 convention, noting that it is progressing well. She gave a report from the Classification Committee. They will deliver their manuscript on January 15, and she will unveil the definition at the Midwinter meeting. There were many comments from Board members on how much this committee has contributed to AAMR with the development of the new manual.

Secretary/Treasurer: J. Pierson reported that the financial statements for October have a similar bottom line to previous months.

M/S/P (M. Yeager, H. Bersani): To accept the October financial report.

The 2002 budget is different from the 2001 budget primarily in the training and publications areas. It projects higher revenues and expenses here because of the anticipated publication of the 10th Edition of the Classification Manual and the new Supports Needs and Intensity Scales and training related to these publications. There was discussion of some additional budget cuts recommended by the Financial Committee, and Executive Committee. Board members felt that it was important that budget cuts not harm our responsiveness to members.

M/S/P (S. Handmaker, M. Seltzer): To accept the 2002 budget.

M/S/P (D. Rotholz, M. Seltzer): To accept the following changes from the Finance Committee:

  1. Cost Cutting Actions:

    1. Study how effectively the 800 number is serving members by noting the number of calls per month and review with the Board prior to taking any action to eliminate this service

    2. Ask regions/chapters/divisions to consider sponsoring activities and events such as publications and national conference sessions

    3. Reduce conference calls

    4. Eliminate the mailing of the legislative goals document to members because it is available on the website

    5. Publish four issues of News & Notes instead of the current six

    6. Eliminate Career Connections

    7. Investigate reducing support for the Midwinter meeting for volunteer leadership.

  2. Revenues Enhancements:

    1. Increase ads in all publications

    2. Increase sponsorships: forums, journal issues, other publications, conference sessions, and events

    3. Think of ways to reach outside of the membership and sell additional products to them

    4. Pay incentives to regions and chapters for selling AAMR books, etc., at their conferences

    5. Ask individual members to look at ways to include AAMR in their national grants, training grants, etc.

M/S/P (S. Gomez, M. Yeager): To withdraw the proceeds ($50,000) from the Zero Coupon Bonds that matured on November 15, 2001, and use the money for operating cash.

Executive Director: D. Croser reported that she has finished the fall circuit of Regional and other meetings. All have felt the impact of state budget shortfalls. Nevertheless, the quality of the meetings has been very high. For the 2001 conference, staff have reached a settlement with the Denver Adams Mark Hotel, reducing the penalty to $5,000 from a high of $39,000. The Board expressed its appreciation for the hard work involved in this success.

Conference of Divisions

D. Rotholz stated that the Conference will be addressing the status of the OT/PT Division, which is currently inactive. The AAMR Consumer's Guide to Services booklet will be reviewed by the Conference, based on the recommendations for AAMR's publications program.

Other Business

SIGN Implementation Committee Report

J. Pierson presented the final report of the committee, noting that only one item is new since June. This is a recommendation that members pay for each Division and Special Interest Group (SIG) they choose to join, with this money split between the national office and the Division or SIG. Because it will be a more active choice to join a Division or SIG, the committee believes this will increase the involvement of members who join Divisions and SIGs, resulting in more effective Divisions and SIGs. The specifics of the committee report will be discussed at the Conference of Divisions and Assembly of Regions at the Midwinter meeting prior to being presented for a vote of the Board of Directors.

M/S/P (A. Reeve, G. Pugh): To accept the report of the SIGN Implementation Committee.

Adjournment

The meeting was adjourned at 2:51 p.m. (EDT).

Respectfully submitted,

Joanna Pierson, PhD, FAAMR

Secretary–Treasurer