PCPID Quarterly Meeting: September 9–10, 2008

Chairman Rhatigan called the meeting back to order and began a discussion of the 2009 report. He stressed the importance of responding to the coming drafts within the requested timeline. He then turned the time over to Dr. David Mank.

Dr. Mank began by expressing his belief that something special was happening and that it is an honor to be a part of it. He reiterated that his role in the process is to write a document that reflects the desires of the Committee and is appropriate for Executive action.

Dr. Mank presented the Committee with a suggested outline of the report and recommended that he and the Committee go through line by line. He briefly discussed his suggestions for the report’s format. He also stressed the importance of telling the story of the report up front—that people with intellectual disabilities are capable of working and that the majority of people with intellectual disabilities currently are not working.

Dr. Mank led a discussion of how to craft the report’s message that will highlight the capabilities and contributions of people with intellectual disabilities. The discussion focused on the 60% gap between employment among the general population and people with developmental disabilities. He noted the importance of the voice of self-advocates to dispel the long-held myths regarding the ability of people with intellectual disabilities to contribute to and participate in the workforce.

Dr. Mank suggested including the costs (to the taxbase) of people not working. He also noted the role of employment in self-esteem and feelings of contribution. He stressed the importance of finding a way to ensure that the stakes are very clear.

Dr. Mank stressed the need to think of a lot of new ideas about how to get people with intellectual disabilities jobs. He also noted the need to work into the larger report the work of the subcommittees. He asked for questions or comments from the Committee members who offered suggestions of ideas and topics for the report.

In addition to discussing losses to the tax base, the Committee discussed pilot programs within the Federal Government (SSA) to make employment more plausible for people with intellectual disabilities that fear the effect that employment may have on their benefits.

The Committee discussed ways to demonstrate potential and value. Ms. Roach reminded the Committee of previous reports done by the Committee on the same topics and suggested that the Committee use a similar approach outlined in those reports. Ms. Roach also suggested that it should be stated clearly at the front of the report that the goal should be competitive and qualitative employment.

Ms. Roach noted that the report should address the Committee’s acknowledgment of the fact that while there are many issues important to successful employment, the report cannot address them all, but recognizes their importance. Chairman Rhatigan echoed the sentiment and suggested that companion pieces be developed at a later date for those issues that needed to be excluded from the report. Ms. Roach noted the success of such a strategy in the past.

Chairman Rhatigan called upon Harris Hollin to discuss how the work of the public awareness and research subcommittees can cut across all of the issues addressed in the report. Mr. Hollin announced that the research applications subcommittee has been looking at components that will strengthen the preparation for work of people with intellectual disabilities and that the subcommittee’s suggestion is to work subservient to Ms. Starnes’ subcommittee and, where deemed appropriate by the subcommittees, to integrate their work for inclusion in the 2009 report.

The Committee discussed the potential issues to be included and excluded and to what depth the included issues should be addressed. The Committee also briefly discussed international access and supports such as transportation and job coaching. Dr. Mank noted that all were important issues and, for the ones that were to be included, the question remained of where in the report they should be located.

Mr. Hollin suggested that the Committee not use the language of myths and facts, but to deal only in truths as such language is more positive.

A suggestion was made to place the “meat” of the report up front so that the report’s central thesis is made clear early on in the report. It was also suggested that the report be organized under the umbrella of the New Freedom Initiative. Ms. Roach noted that Secretary Romano at the Department of Labor volunteered the services of ODEP to collect into one document the practices and policies throughout the Federal Government that currently support the message of the 2009 report.

Dr. Mank discussed his impressions of the ODEP forum, the themes that he saw emerge and how he saw those themes fitting into the 2009 report. He discussed the format he believed would best serve the areas of research and public awareness and suggested that those issues be outlined early in the report, followed by success stories and then finished with recommendations. Dr. Mank also noted his belief that the term “readiness” should not be used lest it imply that the issue preventing people with intellectual disabilities from finding gainful employment is that they are unready for the workforce.

A Committee member proposed a potential outline for the report and Ms. Zeppuhar stressed the need for the term “competitive” employment. The Committee then discussed the need to come up with a definition of employment and noted that there may have been one agreed upon at the previous meeting; Ms. Roach promised to supply Dr. Mank with that definition.

Dr. Mank continued to discuss potential topics and formats for the report, noting the perhaps the heart of what the Committee intends to improve through their recommendations includes building experience and promoting employment. He also noted that while disability services tend to be good at starting things, including transition from school to work—post-secondary education, customized employment, etc.—they have not been as successful at fully implementing those ideas that are known to work.

Dr. Mank discussed the importance of presenting a balanced message, including the suggestions from Chairman Rhatigan to include systemic issues that influence decisions to work—such as work incentives, asset development and benefits management.

Dr. Mank then concluded his discussion of his potential outline with the note that he would be listening to the Committee’s discussions throughout the day to determine how he would proceed with completion of the 2009 report.

Chairman Rhatigan suggested the Committee go back to the beginning of the outline and discuss potential titles, and go over each of the sections. He noted that this report should be different from previous reports and that he wanted to hear suggestions from people with various perspectives. He noted the President’s use of the terms “light” and “dark” and invited the Committee members to suggest impactful language to include in the report. Suggestions were made including phrases such as “all men are created equal” and “employment: pursuit of work, pursuit of happiness.” Mr. Carradini and Ms. O’Halloran provided suggested text for inclusion in the report (see attached for complete text). It was suggested that the terms “meaningful” and “integrated” be included in the report. It was also suggested that the terms “achieve” and “dreams” be included together. It was also suggested that the term “contributive” be used in the correct context.

It was suggested that members of the Committee that had children engaged in competitive employment and micro-enterprises provide “blurbs” for the success stories to be included in the report. It was also suggested that the success stories reflect various stages throughout the lifespan. It was noted that implementation is the most difficult part of the equation, but that it is central to solving the problems addressed in the report. Several members discussed the difficulties facing parents of children with intellectual disabilities and highlighting their successes in the success stories section of the report. Mr. Cantos suggested that the success stories be included in a sidebar format.

Dr. Mank noted that while he would do his best to represent all of the thoughts and suggestions of the Committee members, he could not guarantee that all of the suggested language would become part of the report.

The Committee briefly discussed the need for mothers of children with intellectual disabilities to “let go” and allow their children to become integrated into and participate in the community.

Harris Hollin offered a resolution to provide a procedure for choosing a recipient of the George N. Bouthilet Award that would allow the Chair to decide upon a recipient from amongst nominations provided by the Committee members within a given timetable. The Chair would ideally seek unanimous approval of a recipient during a face to face meeting, but in the event that such a process is not possible due to time constraints, the Chair would be empowered to make the decision from the submitted nominations.

The Committee voted to approve the resolution.

Chairman Rhatigan expressed the gratitude of the Committee for Dr. Mank’s time and discussion.