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PCPID Meeting: November 15, 2007

Participant List

Dallas “Rob” Sweezy

Sally Atwater

Richard Balkus

Ricardo Barraza

Jewel Bazilio-Bellegarde

Valerie Billmire

James Boles

Stephanie Preshong Brown

Carmela Vargas Gonzales

Caffin Gordon

Mark Gross

Stephen B. Hollingshead

Harris N. Hollin

MJ Karimi

Pat Leahy

Casey Patrick O’Halloran

Billy Parker

Thomas J. Reilly

Steven C. Rhatigan

Laverdia Roach

Neil Romano

Kodie Ruzicka

MaryMargaret Sharp-Pucci

Linda Hampton Starnes

Steven Suroviec

John R. Vaughn

Donna Wiesner

Sharman Word Dennis


Sally Atwater began the meeting by asking the Committee members if they had all received their FedEx packages sent out by the PCPID staff. She explained that the copy of the new Executive Order will be in effect until September 30, 2009. Ms. Atwater also recognized Dr. John Vaughn from the National Council on Disabilities.

Ms. Atwater stated that the objective of the meeting was to select a topic for the 2008 Report to the President. Ms. Atwater then turned the meeting over the Committee Chairman, Rob Sweezy.

Mr. Sweezy began by noting the Committee’s desire to do something for the family of Dr. George N. Bouthilet. Ms. Atwater noted that PCPID requested permission from the department to hold a memorial service and stated that she would keep the Committee informed of any developments. Ms. Roach also noted that the Committee had decided to dedicate the 2007 report to the memory of Dr. Bouthilet.

The Committee voted approval of the minutes for the September 2007 Quarterly Meeting. They also voted to approve the agenda.

Laverdia Roach gave a summary of progress on the 2007 Report to the President noting that she anticipated sending it through official channels early the following week.

Mr. Sweezy addressed some housekeeping issues regarding the decision making process for choosing a theme for the 2008 report.

Kodie Ruzicka read from the minutes of the September quarterly meeting the discussion of potential topics for the 2008 report.

Chairman Sweezy suggested that the Committee begin by discussion the continuation of some of the themes from the 2007 report into 2008. He also suggested that the Committee may want to consider choosing the themes for the 2008 report, but not necessarily finishing the report by May of 2008 as was previously planned, but instead pass the report on to the next Committee for completion.

In answer to a question, Ms. Atwater noted that the next Committee would be under no obligation to continue with the themes set by the previous Committee. Ms. Roach also mentioned that in her experience, a new Committee had never embraced the work of a previous Committee in determining their direction for the coming years. It was also noted by a Committee member that it could be several months before the new Committee was able to meet which would add additional pressure to complete a 2008 report.

Ms. Atwater interjected that the Committee also needed to take into consideration that PCPID is currently operating without a full staff and that she had no control over whether or not she would be able to fill the position left vacant by Dr. Bouthilet. Harris Hollin noted that the Subcommittee on Research Application was prepared to continue its work without a PCPID staff member.

Ms. Roach answered the Committee’s procedural questions regarding preparation of the report by the May deadline, particularly noting the experiences of past Committees in a similar situation.

The Committee then began discussion of potential topics for the 2008 report and it was suggested that employment serve as the main theme with a subtopic of translational research. Other issues suggested included people with intellectual disabilities and issues of aging, fetal alcohol syndrome or alcohol spectrum disorder and their impact on the criminal justice system, consistency in definitions of people with intellectual disabilities and streamlining programs for caregivers.

Chairman Sweezy called on Mr. Hollin to address the potential topic of translational research. There was also discussion of a Department of Education conference being held in January, but not enough information was available during the meeting to warrant further discussion.

Chairman Sweezy then invited Billy Edwards to discuss fetal alcohol spectrum disorder and its effects on the criminal justice system. A discussion ensued amongst the Committee members, and Mr. Edwards agreed to put together more information and statistics on the issue and suggested that the Committee hear a speaker on the subject during their next meeting to determine whether to include it as a topic in the 2008 report.

Chairman Sweezy invited Donna Wiesner to present to the Committee on streamlining definitions of intellectual disabilities among Federal programs. Ms. Wiesner noted that she did not believe that the Committee should take up the job of forming the definition, but could write a report that focuses on the consequences of using inconsistent definitions throughout Federal programs. Several Committee members concurred with this observation and suggested the formation of a small subcommittee to address the issue.

Chairman Sweezy then invited Neil Romano and Steven Rhatigan to begin the discussion of employment as a potential theme for the 2008 report.

Mr. Romano began by noting the employment is fundamental to a person’s character and personality development. He acknowledged that there are many experts in the field who would be willing to lend their expertise a roundtable.

There was a discussion on the difference between employment and volunteerism and its potential use as a pathway to paid employment. Mr. Romano, in answer to a question, also clarified that his presentation was not geared only to employment with the Federal government.

The Social Security Administration indicated its support of and interest in using employment of people with intellectual disabilities as a theme for the report.

Mr. Hollingshead suggested that the Committee keep its basic structure from the previous year and also invest some time in coming up with a general outline for the 2008 report before beginning the writing process.

Chairman Sweezy concurred and noted that an outline would be particularly important in the case of employment in order to keep the Committee focused.

John Vaughn stated that the National Council on Disability recently released a study on employment and suggested that attitudinal barrier also be included in the report. Chairman Sweezy noted that the Committee had highlighted the theme of attitudinal barriers in the 2007 report and agreed that it should be carried into the 2008 report as well.

Chairman Sweezy then asked the previous subcommittee chairs about their interest in remaining chairs for the upcoming report, noting that Mr. Hollin had already expressed his desire to continue in his work with the Subcommittee on Research Application. Linda Starnes expressed her intention to step down as chair of the Subcommittee on People with Intellectual Disabilities and the New Freedom Initiative.

Chairman Sweezy invited Mr. Rhatigan to weigh in on the discussion of employment as the theme for the 2008 report. Mr. Rhatigan stated that his area of focus was on Federal and state disability programs and how they are often a barrier to employment for people with intellectual disabilities. Chairman Sweezy noted that Mr. Rhatigan’s area of focus would fit nicely into the overarching theme of employment.

Chairman Sweezy requested volunteers to help Mr. Romano and Mr. Rhatigan in formulating the outline for the employment theme. Mr. Hollin volunteered. Ms. Wiesner volunteered. Jewel Bazillio-Bellegarde volunteered. Stephanie Preshong Brown volunteered.

The Committee members discussed the process for producing an outline—including how to determine which issues the Committee would address – noting that both Steve Rhatigan and Billy Edwards had agreed to provide for the Committee additional information regarding their respective interests.

Chairman Sweezy asked the Committee if there was a consensus on using the theme of employment for the 2008 report. A motion was made and seconded to accept employment (work—including volunteerism) as the theme for the 2008 report and the motion carried.

A discussion followed regarding subcommittee and work group structure and it was noted that there may not be a need of three distinct subcommittees as the Committee had previously established for the 2007 report. It was suggested that smaller workgroups be formed to work on the various pieces of the employment theme.

Ms. Atwater asked the Committee if they were interested in holding a roundtable on employment issues and it was decided that the issue of the roundtable would be addressed at a later time. The Committee also discussed using the employment report from the National Council on Disability to inform their discussion as well. It was decided that the NCD report would be sent out to the Committee members for review.

The Committee charged those who previously volunteered to provide an outline of the employment theme.

The meeting adjourned.

Last modified on 03/08/2017

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