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PCPID Meeting: May 14-15, 2007


Participant List

Sally Atwater
Ricardo Barraza*
Jewel Bazillo-Bellgarde*
Stephen V. Bird*
James M. Boles*
George N. Bouthilet
Stephanie Preshong Brown*
Olegario D. Cantos, VII
Sasha Evans
Margaret Giannini*
Jerold L. Gidner
Robert G. Goldstraw
Carmela Vargas Gonzales*
Caffin Gordon*
Martin Gould*
Mark Gross*
Loretta Harrington
Harris N. Hollin*
Stephen B. Hollingshead*
MJ Karimi
Pat Leahy*
Mary Kay Mauren*
Pamela Mazerski*
Casey Patrick O’Halloran*
Renee Pietrangelo
Thomas J. Reilly*
Steven C. Rhatigan*
Laverdia T. Roach
Neil Romano*
Kodie Ruzicka
Margaret Schaeffer*
Daniel Schneider
MaryMargaret Sharp-Pucci*
Linda Hampton Starnes*
Stephen Suroviec*
William Tienken*
Sheila Whittaker
Donna Wiesner*
Sharman Word Dennis*

* Committee Member

Minutes: Proceedings of May 14, 2007

Executive Director Sally Atwater opened the meeting and welcomed the members. Ms. Atwater recognized the PCPID staff and noted that the purpose of this meeting was to discuss the 2007 Report to the President. Ms. Atwater noted the reappointment of several citizen members and the addition of several new ex-officio members. She then turned the floor over to Chairman Rob Sweezy.

Chairman Sweezy invited the new ex officio members, Caffin Gordon, Pat Leahy and Margaret Schaefer, to give a brief self-introduction. Chairman Sweezy then introduced the meeting’s activities.

Ms. Atwater stated that Dan Schneider, Acting Assistant Secretary of the Administration for Children and Families, was going to be late and suggested that the ex officio members update the Committee on what is going on in their respective agencies regarding people with disabilities. Chairman Sweezy opened the floor for any ex officio members who were prepared.

Martin Gould, ex officio representative from the National Council on Disability, updated the committee on a project that intended to look at three levels of American life and government operations as they affect people with disabilities. Mr. Gould explained that the project put national indicator systems, federal government evaluation programs and systems, and an attempt to develop indicator systems around quality of life, together. Mr. Gould stated that they expect to be able to release it in September of 2007.

Mark Gross, ex officio representative from the Department of Justice, spoke of the Civil Rights Division and their work with mental institutions. Mr. Gross noted that he thought the division was involved with Homeland Security in emergency exigent circumstances.

Margaret Schaefer, ex officio representative from the Department of Homeland Security, stated that they are working with the Department of Justice and many other organizations on emergency response plans for people with disabilities. Ms. Schaefer spoke of the revision of the national response plan and the National Incident Management System so that people with disabilities are included in various response aspects. She then described the ways that they have been working with FEMA on these issues. Ms. Schaefer noted that they are also developing a special needs planning guide that will be available to planners at the state and local level—hopefully by the end of the summer.

Pat Leahy, ex officio representative from the Department of Commerce, addressed three programs he believed would be of interest to the Committee:1) the 2010 census; 2) digital tv transition; and 3) the Technology Administration. He noted that the digital tv transition has included people with disabilities in its outreach plan, and the TA has a draft document on people with cognitive disabilities and technology.  Mr. Leahy also addressed a question regarding disability-specific information on the census, responding that the Commerce Department was taking a close look at the issue.

Chairman Sweezy then introduced Dan Schneider.

Mr. Schneider began by impressing upon the Committee the importance of all life and the importance of the Committee’s role in protecting the lives of people with intellectual disabilities. He then proceeded to swear in the reappointed Committee members.

After a short break, Pamela Mazerski, ex officio representative from the Social Security Administration (SSA), addressed the Committee and noted that the SSA had been focusing on helping young people with disabilities transition into adulthood.

Mr. Sweezy instructed the Committee to break into subcommittees for work on the 2007 Report to the President.

After coming back together as a full Committee, Susan Parker, ex officio representative from the Department of Labor, gave an update. She began with an explanation of the Office of Disability Employment Policy (ODEP) and the five policy divisions: the Youth Bureau, the Adult Policy Team, Employment Supports, Employers, and Evaluation and Research.

The Committee then recessed for lunch.

Upon the Committee’s return, Ms. Atwater introduced Bob Goldstraw, Project Manager of at the U. S. Department of Labor, Office of Disability Employment Policy (ODEP). Mr. Goldstraw presented a demonstration of and highlighted the recent improvements to the site. He mentioned his previous meeting with the Subcommittee on Public Affairs and noted that many of the recommendations from that meeting had already been implemented. Mr. Goldstraw briefly discussed their outreach efforts and the impact they had had on site users.

Mr. Goldstraw then turned the time over to Loretta Harrington from ODEP to explain the funding source for After her presentation, Mr. Goldstraw continued with the demonstration of, particularly noting the need for increased agency involvement, a maintainable thesaurus for search terms, a review of how and for whom the program descriptions are written, and an active effort from each partnering agency to raise public awareness of the site. He then took questions and suggestions regarding the site from Committee members, including a tour of the soon-to-be-live state resources guide.

Upon the completion of Mr. Goldstraw’s remarks, the Committee recessed until Tuesday, May 15 at 8:30 AM.

The meeting began with a statement by Rene Pietrangelo, Executive Director of the American Network of Community Rights (ANCOR), regarding the organization’s interest in collaborating with the Committee.

Stephen Hollingshead, Senior Advisor to the Secretary of the Department of Housing and Urban Development, then provided an agency update. He discussed Secretary Alphonso Jackson’s involvement and continued support of the Money Follows the Person Initiative. Mr. Hollingshead also commented on the progress of the Section 811 demonstration program and HUD’s efforts to make the program more efficient and expansive. He related that 2006 saw a record number of disability discrimination complaints to the Office of Fair Housing, but noted that the increase was most likely due to more efficient collection methods, and that the Assistant Secretary for Fair Housing, Kim Kendrick, is proactive about the problem. He also mentioned “Freddie the Fair Housing Fox”— the new mascot for fair housing. Mr. Hollingshead then answered questions from the Committee.

Chairman Sweezy called for the chairs of each PCPID subcommittee to give a report on their contributions to the 2007 Report to the President.

Harris Hollin, Chair of the Subcommittee on Research Application, began his report by noting the importance of the presentation from the day before, but also noted that the terms used on the site were often confusing as it referred to “children with cognitive, intellectual and developmental disabilities.” He stated that by definition, children have intellectual disabilities, adults who are diagnosed as a child can have intellectual disabilities, but only adults, diagnosed after childhood, have cognitive disabilities. Donna Wiesner, ex officio representative from the Department of Education, noted that often, the definitions used by an agency or program reflect the definition used in the authorizing legislation and, therefore, care must be taken to recognize the definition used by Congress. Mr. Hollin suggested that perhaps a Committee recommendation should be unifying or codifying the definitions across all agencies.

Mr. Hollin reported that the Subcommittee on Research Application had finalized their contribution to the 2007 Report to the President. He outlined the subcommittee’s document structure and briefly detailed the it’s recommendations.

Linda Starnes, Chair of the Subcommittee on People with Intellectual Disabilities and the New Freedom Initiative, began by making editorial notes and discussing the possibility of including a glossary of terms and a list of acronyms in the 2007 Report to the President. Ms. Starnes then made a brief presentation on the status of the four sub-sections of her subcommittee’s report.

There was a brief discussion of the timeline for the 2007 Report to the President, as well as some additional instructions regarding document structure and editing. Chairman Sweezy recommended that the overarching theme of the value of people with intellectual disabilities be woven into the text of all of the sections and subsections in order to make the document more cohesive and firm in its purpose. There was a discussion regarding the use of appropriate and value-affirming language when discussing research into the causes, treatment and cure of intellectual disabilities.

Neil Romano, Chair of the Subcommittee on Public Awareness, began his report by stating the goal of the subcommittee is to strengthen the language regarding the value or worth of people with intellectual disabilities. He then gave an update on the subcommittee’s efforts to strengthen their recommendations—particularly in reference to the section on and criminal justice.

Chairman Sweezy charged the subcommittees to look for ways, throughout their respective documents, to use positive language, and suggested that the recommendations appear at the beginning of the report. He also suggested that the subcommittee discuss the title of their respective sections and work to include the word “value” or “valuable.”

The Committee then broke to work in subcommittees.

The Committee reconvened and Chairman Sweezy began by noting the vast differences in the perspectives and experiences of individuals on the Committee. He urged the Committee to take full advantage of that fact and asked Committee members to share their thoughts on the value of people with intellectual disabilities and the impact they made on their lives. A list of responses was developed. Some of the items included on the list were: Joy, texture, unrestrained love, perspective, strength, inspiration, flexibility, leadership and humility. Chairman Sweezy explained that members of the public who do not understand what the Committee understands about people with intellectual disabilities can learn about people with intellectual disabilities through the Committee’s efforts to communicate the items on the list. Chairman Sweezy indicated that he would like the introduction of the 2007 Report to the President to reflect the values and feelings included on the list they had just made. Mr. Hollin suggested that the list be included on the inside front cover of the 2007 Report to the President.

The Committee discussed the importance of communicating to the population at large, the value, impact and importance of people with intellectual disabilities in our society. Members also discussed the need to stress that, like people without disabilities, people with intellectual disabilities have needs, ambitions and the potential to grow.

Chairman Sweezy called for new business. Ms. Atwater asked the Committee to approve the minutes from the previous meeting. It was noted that, due to scheduling difficulties shortly after the meeting was called to order, this agenda item was initially overlooked. The minutes were approved.

Chairman Sweezy called for a brainstorming session to discuss potential themes for the 2008 Report to the President.

Will Tienken recommended that a representative from be invited to every meeting scheduled for the next year as a means of taking a proactive approach to improving site content and usability.

Stephen Suroviec suggested emergency and disaster preparedness as a potential future topic, citing the experiences of people with disabilities in the aftermath of 9/11 and Huricane Katrina. He noted that local emergency management personnel are ill prepared, and expressed his belief that this was an important issue for the Committee to address. Mr. Gross noted that the Committee had included, in a previous report, a section on emergency preparedness.

Steven Rhatigan acknowledged Mr. Hollins’ efforts on behalf of returning soldiers with cognitive disabilities. He suggested that for the next report, the Committee should address overall reform of the service delivery system to better coordinate (unify) programs and benefits.

Mr. Gross—noting that these were his own opinions and not those of the Justice Department—recommended that the Committee address the expansion of employment opportunities for people with intellectual disabilities. He also suggested the topic of genetic testing. Mr. Hollin noted that the Subcommittee on Research Application had discussed the possibility of addressing the topic of genetic testing, but ultimately decided against it because of the highly controversial nature of the issue.

Mr. Romano reiterated the need to emphasize employment, noting that it is pivotal to who we are as a people. He recommended that the Committee stay with the value theme and focus on the economic value of people with intellectual disabilities. Mr. Romano also mentioned transitional programs as a means of moving people with intellectual disabilities from educational environments to work opportunities.

Jewel Bazillo-Bellgarde recommended a community service theme, and both Mr. Reilly and Mr. Sweezy commented on possible tie-ins to that theme.

Ms. Starnes recommended looking at higher educational opportunities for people with intellectual disabilities and the opportunity for transition to work through such programs. She also recommended a theme of religion and disabilities as another component to fulfilling the promise of full community access outlined in the New Freedom Initiative and the ADA. Ole Cantos of the Justice Department commented on the importance of the faith community integrating people with disabilities into their practices—not just as someone who needs healing, or prayer, but as participants in the activities of the congregation.

Mr. Hollin expressed the desire of the Subcommittee on Research Application to expand on its current work to focus on the accelerated transfer and application of research.

Mr. Suroviec suggested a review of the Federal government’s efforts to enforce the Supreme Court decision that people with disabilities should not be unnecessarily institutionalized. He also recommended that the Committee be bold in its selection of the 2008 topic, choosing something that has not been addressed in the past.

The Committee discussed the possibility of an in-person meeting in July, August or September.

Chairman Sweezy then thanked the staff and subcommittee chairs for their work in putting together the draft of the 2007 Report to the President, and adjourned the meeting.


Last modified on 03/08/2017

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