PCPID Quarterly Meeting: July 19, 2011

Minutes: Summary of Proceedings

Greetings and Call to Order

Sharon Lewis, ADD Commissioner, PCPID Designated Federal Official
Jim Brett, PCPID Chair

Commissioner Sharon Lewis welcomed Committee members and called the meeting to order. She asked participants to state their name and indicate whether they were members of the Committee or the public. Commissioner Lewis then asked for public comment. No comments were offered.

Chairman Brett requested clarification regarding postponement of the White House event, originally planned for Friday, July 22, 2011, for political appointees. Commissioner Lewis replied that the event was postponed due to weather-related concerns. She explained that members who had a conflict with the July 22^nd date would now have an opportunity to RSVP for the event. In response to a question from Dr. Spitalnik, related to lack of email notification about rescheduling of the event, the Commissioner offered assurance that the RSVPs from members had been received, and the lack of notification was due to a mishap.

Regarding transmittal of the PCPID Report to the President, Commissioner Lewis explained that, because neither the Executive Order nor the Charter state a report must be submitted by the end of each calendar year, members should not feel rushed to submit a report by December 31, 2011 As a result of members being sworn in on June 16, 2011, they will have until June 16, 2012 to submit their first report.

Commissioner Lewis then turned the meeting over to Chairman James Brett. Chairman Brett described the purpose of the meeting and encouraged members to express their opinions regarding preparation of the Report to the President. He then turned the meeting over to Subcommittee Co-Chairs, Dr. Deborah Spitalnik and Mr. Peter Berns.

Report Topic and Planning Discussion re Data Gathering Questions

Dr. Deborah Spitalnik, Peter Berns and PCPID Members

Dr. Spitalnik thanked the Commissioner for clarification on the report deadline, and noted that this will give the Committee an opportunity to produce a quality report. She explained that the environment in which the current Committee members work has changed from that experienced by their predecessors. The Committee no longer has the resources to commission extensive works based on conferences with expert speakers or pull in consultants as done in the past. This means that a considerable amount of the work will be done by the Committee through the expertise of its members and self-advocates. Expressing agreement with Dr. Spitalnik, Mr. Brett added that resources are limited and Committee members will be responsible for retrieving data necessary for the preparation of the report. Mr. Berns suggested that members must begin by deciding the content of the report and the Committee’s goals.

Dr. Spitalnik acknowledged that the Committee has a richness of experience that can contribute to the report. She then asked members to describe how they want to work together before the next face-to-face meeting on September 26–27, 2011.

Ms. Alison Hillman de Velasquez expressed that the Committee should put forth a report with meaningful recommendations on which the President will be able to act. She added that taking a year to write the report would be unwise, as the President would be unable to enact the recommendations in the midst of the upcoming election cycle. She concluded by offering her assistance in researching and drafting a section of the report.

Ms. Micki Edelsohn advised putting together a first year short-term report, and using the 50^th anniversary as the primary focus of the larger report. Dr. Sheryl White-Scott agreed with the suggestion of using the 50^th anniversary as a focus of the second report. She emphasized the use of the report as a tool for public awareness. Dr. Annette McKenzie Anderson agreed with a meaningful short-term report and offered her expertise in researching and drafting the first report.

Commissioner Lewis informed Committee members that they are not restricted to a single report format. She explained that the Committee is allowed to submit a variety of correspondence formats (letters, videos, etc.) to advise the President.

Chairman Brett summarized what had been stated previously about a short-term report, and asked if the goal is to prepare the report by the end of the calendar year. Dr. McKenzie Anderson, Ms. Edelsohn and Ms. Hillman de Velasquez responded in the affirmative. Mr. Carl La Mell stated that the December 31^st deadline should be a flexible goal, and that quality should be the primary concern.

The Chair and Mr. Berns asked for more elaboration on the intended subject matter of the report as well as the timeframe. Ms. Weintraub agreed with the idea of the short-term report with a December 31, 2011 deadline, and requested that the Committee consider employment as the topic of the report, based on expressed concerns of people with ID that she has encountered in her work. She explained how employment is crucial to achieving full community participation.

Mr. Mark Gross noted that public awareness has been on the Committee’s agenda for many years and remains a difficult topic to address. He agreed with the suggestion of considering employment, as it is the key to the independence of people with ID. In response to concerns expressed by Mark Gross, Dr. Spitalnik suggested using public awareness as a component of the final strategy to accomplish the Committee’s goals. She explained how the Committee had agreed, during the full Committee meeting of June 16–17, 2011, that full community participation should be considered the overarching goal of the Committee. Dr. Spitalnik added that employment could be used as a more salient aspect, with support coming from resources including: self-advocates; work of the prior Committees; recommendations from the Alliance for Full Participation in November; and, ADD’s funding of Projects of National Significance. Dr. Spitalnik concluded that other areas, outside of employment, could be considered in the larger second report. Ms. Edelsohn agreed with these suggestions and explained that the Committee should call on companies and corporations such as Marriott, MBNA/Bank of America, and Project SEARCH at Cincinnati Children’s Hospital, all of which have been recognized and won awards for employing people with ID. Dr. Spitalnik replied that this could be an interesting component of a multi-dimensional approach to employment. She then expressed concern about what is happening with the Affordable Care Act (ACA) and the inclusion of people with ID, especially as it relates to long-term care.

Mr. Berns requested that, before delving into the specific topics, the Committee clarify exactly what success will look like. He asked that members speak on why the 50^th anniversary is significant to them. Ms. Susana Ramirez stated that the 50^th anniversary could be a great tool for advocating for increased public awareness. She also reemphasized having flexibility with the timing of the report, as suggested by Mr. La Mell. Mr. Gross agreed with conducting a comparison of the lives of people over the past 50 years. He explained how his experience has shown him that the lives of children have been hugely enhanced as a result of the American with Disabilities Act (ADA). However, this advancement is significantly less in adults once they leave the world of education, and the anniversary gives a great opportunity to call attention to this fact. Dr. White-Scott agreed with this observation and considered the 50^th anniversary to be a wonderful milestone. She stated that the anniversary could be considered a vehicle for not only public awareness and reflection but also to look at the issues of transition, employment, and the ACA. The report should highlight some key issues and show how the nation needs to move forward in regards to the lives of people with ID. She also explained how this could be accomplished through different types of media, such as a letter or a video. Dr. McKenzie Anderson considered the anniversary as a great opportunity to show the past, present, and future of ID and increase public awareness in pursuit of full community participation. She also highlighted some areas where people with ID are now included, such as post-secondary education and fine arts programs.

Mr. Berns stated that, from his perspective, the 50^th Anniversary is significant for two reasons:

1. the anniversary presents an opportunity to reflect on what has been accomplished, and what remains to be done; and
2. it provides the chance to produce something that is of great significance, similar to what was done by the first Presidential Panel.

Ms. Hillman de Velasquez proposed that the Committee construct a well-written, focused report with recommendations on employment first; then, focus on the 50^th anniversary in the second report. She also suggested connecting the issue of transition to employment. She then asked Commissioner Lewis or Ms. Laverdia Roach about whether the Committee can only submit one report each year. Commissioner Lewis emphasized that limited resources may serve as a restraint to the production of numerous correspondences but the Committee does have the freedom to submit several reports, letters, etc. Mr. Clay Boatright agreed with the idea of having two reports and stated that the Committee could compose a report on employment, which would be of minimal expense by consolidating reports already available. This approach would also have a greater potential to impact the budget process that begins in March. Simultaneously, the Committee could begin work on a long-term report that takes into consideration the 50^th anniversary but also seeks to make a substantial impact. In order to have this impact, the Committee would need to determine a report theme that is innovative. In response, Dr. Spitalnik highlighted the accomplishment of the Blue Ribbon Panel’s report, which suggested the need for federal and state governments to make public policy on behalf of people with ID. She suggested that the Committee could illustrate how to make public policy work for this population in a wide range of areas. Dr. Spitalnik explained how, in the history of the Committee, there were multiple reports produced in one year. She suggested that the Committee should place the deadline of a report on employment at a point in time where it could have an impact on the federal budget, and asked Commissioner Lewis what about the best time to submit this kind of report. Ms. Lewis replied that the President announces his plan for the federal budget for the following fiscal year in February. The deadline for influencing the budget for FY13 has passed. The next proposal cycle will begin in March 2012, which will create the budget for FY14, and the best time to have a report available is during the spring.