PCPID Quarterly Meeting: June 25–27, 2008

Minutes

Proceedings of June 25, 2008

Executive Director Sally Atwater welcomed the Committee members and guests to the quarterly meeting of the President’s Committee for People with Intellectual Disabilities.

She asked the PCPID staff to introduce themselves to the Committee. Following the staff introductions, Ms. Atwater introduced newly appointed Chairman Steven Rhatigan and presented him with the Presidential Order for his appointment. Ms. Atwater then turned the meeting over to Chairman Rhatigan.

Chairman Rhatigan welcomed the Committee members and expressed pride in working with such a group of proven advocates to combat the “soft bigotry of low expectations” that faced people with intellectual disabilities. Chairman Rhatigan stated his intent to work with each Committee member to provide a forum for the insight and experience each member brought to the table. He stressed the importance of openness, honesty, patience and respect. He also stressed the importance of placing the ultimate collective goal above individual desires in order to positively influence the increasingly challenging issues facing people with intellectual disabilities.

Chairman Rhatigan introduced Charles Keckler, Acting Deputy Assistant Secretary for Policy with the Administration for Children and Families (ACF), US Department of Health and Human Services.

Mr. Keckler began by expressing the Administration’s pleasure to have PCPID within ACF. He provided a brief overview of the mission of ACF, including some background on the Administration’s move from a traditional welfare agency to an agency that provides national leadership to providers of human services throughout the country so that they may better serve populations in need. He stressed that many of the challenges addressed by the Committee are at the state level and that the Committee must provide leadership for those on the front lines providing services.

Mr. Keckler spoke of the importance of the Federal Government being perceived as a government of citizens. He noted the importance of George Washington’s voluntary resignation from the presidency to return to the life of a private citizen, and its signal to the world that America would be a single body of citizens, some of whom would go into public service for a time and then return to the citizenry.

Mr. Keckler noted three particular areas in which the Committee’s work integrated with the mission of ACF: the New Freedom Initiative, emergency preparedness and prevention.

Following his remarks, Mr. Keckler officiated the swearing-in ceremony of the new members of the Committee.

The Committee then took a short recess for the members to sign their affidavits. The Committee reconvened and approved the minutes of the April, 2008 quarterly meeting. The Committee members introduced themselves and spoke briefly of their interests and motivation for serving on the Committee. The Committee then took a brief recess.

The Committee reconvened and the representatives from the various ex officio agencies introduced themselves and presented a brief description of the programs and services within their respective agencies that impact people with intellectual disabilities.

Chairman Rhatigan introduced Patricia Mantoan, Senior Attorney with the General Law Division of the Office of the General Counsel, US Department of Health and Human Services.

Ms. Mantoan explained to the Committee the Federal Advisory Committee Act (FACA), the statute governing Federal and Presidential advisory committees. She explained the purpose of FACA is to bring transparency to the advisory committee process and to allow public participation. She highlighted some of the statutory requirements of FACA and explained that the burden for compliance rested with the agency, not the Committee members. Ms. Mantoan explained that the Committee’s annual report is filed with the Library of Congress to allow researchers access to past reports. Ms. Mantoan closed her presentation by stressing the importance of FACA compliance and then indicated her willingness to answer any questions.

In response to Committee members’ questions, Ms. Mantoan explained that the scope of the Committee is provided in the Executive order and that the Committee’s reports are ultimately to be made available to the public, but that there are clearance and vetting processes that may need to be completed before a report may be disseminated to the public.

Chairman Rhatigan thanked Ms. Mantoan for her presentation and introduced Naomi Miske, Associate Counsel for Ethics Education, Office of the General Counsel, US Department of Health and Human Services.

Ms. Miske began by defining a special government employee (SGE) and noting that SGEs have relaxed ethics rules when compared to full time Federal employees. She encouraged the members to take a look at the ethics rules and regulations and noted that the most important thing to come away with is the name of the ethics official responsible for the Committee—Curtis Coy.

Ms. Miske indicated that the central ethics rule that the Committee members should concern themselves with is that they are prohibited from participating in a matter that would have a direct and predictable effect on their own financial interests. She noted that these rules are codified in a criminal statute and that violation of the rules could come with fines and possibly prison terms. She also noted that the interests of a spouse, minor child, employer, general business partner or affiliated organization may also have interests which can be imputed to the members. Ms. Miske advised the Committee members to immediately contact their ethics official if they feel that they may have a possible conflict.

Ms. Miske discussed some of the scenarios in which a conflict may arise and related some examples. She described the requirement and process for filing the OGE form 450 (financial disclosure form), noting that Committee members are required to fill them out annually. Ms. Miske related the various options for working around identified conflicts such as filing a waiver.

Upon Ms. Miske’s discussion of the ethics guidelines relating to Committee member activities during and after their terms of service expire, several Committee members raised questions regarding the lifetime ban on certain activities, and the definition of “personally and substantially” as it relates to government ethics for SGEs. The Committee members asked for additional clarification on several issues and Ms. Miske suggested that the Committee members notify her office with any questions about particular activities that may potentially be in conflict with the ethics statutes and guidelines.

Ms. Miske concluded her remarks and Chairman Rhatigan thanked her for her presentation.

Chairman Rhatigan introduced former chairman Rob Sweezy to give the Committee a historical view of the Committee’s activities and his reflections on the work of the previous Committee.

Mr. Sweezy acknowledged the work begun by the previous Committee and expressed the hope that the new Committee might pick up and continue to move forward with some of their work. He reiterated the charge to the Committee from then Assistant Secretary Wade Horn to be bold. He noted that not only does the Committee have the opportunity to share its collective knowledge with policy makers, but that each Committee member can take back to their communities what they learn from each other. He urged the members to take advantage of the ex officio members serving on the Committee.

Mr. Sweezy concluded his remarks and Chairman Rhatigan thanked him for his leadership in the prior work of the Committee.

The meeting then recessed for lunch.

The meeting reconvened with two additional ex officio agency presentations. Chairman Rhatigan noted that in regards to the presentation on ethics given earlier that morning, Ms. Miske, agreed to put together a new handout for the Committee members that would be more specific to the ethics regulations and guidelines as they applied to SGE’s. He then introduced the film, Life in the Shadows.

At the conclusion of the film, Dr. Giannini provided the Committee with some additional background information regarding the University Centers of Excellence discussed in the film, and Ms. Roach provided additional background information regarding the history of the Blue Ribbon Panel discussed in the film.

Chairman Rhatigan began a discussion on the 2009 Annual Report to the President by noting that for those who had particular areas of interest that may not be included as part of the 2009 report, the opportunity may be available to partner with one or more of the ex officio agencies to host a roundtable on the issue.

Chairman Rhatigan urged the Committee to be cognizant of the limited number of PCPID staff and urged the Committee to be sensitive to that fact as they developed their approach for the 2009 report. He discussed his desire to recruit two vice-chairs and named Ollie Cantos and Linda Starnes to serve in that capacity.

Chairman Rhatigan turned the time over to Ms. Atwater to discuss the PCPID Procedures Manual.

Ms. Atwater began by explaining that the Executive order and charter of the Committee provide the Committee’s marching orders. She particularly noted that the most recent Executive order and charter reflected the language of the New Freedom Initiative, and that in 2003 President Bush changed the name of the Committee to reflect people-first language. Ms. Atwater explained some of the housekeeping logistics of the Committee and that the Committee membership was pulled, in part, from several Federal agencies and that each had an equal vote on the Committee.

Ms. Atwater reminded the Committee that they—and she—serve at the pleasure of the President. She noted that the status of the current Committee may or may not change during the upcoming transition to a new Administration.

Ms. Atwater reviewed the procedure for communicating with the PCPID chair, executive director and staff. She explained that she is the Designated Federal Official (DFO) and that her role as such is defined by FACA.

Ms. Atwater discussed the Committee’s responsibility to provide an annual report to the

President. She addressed the Committee’s previous questions regarding publication and public dissemination of the report and explained that PCPID has a constituency of one—the President. She noted the process outlined in the Procedures Manual for identifying national issues for consideration in the report and the importance of being creative and working together. She also explained the process for voting on the final draft of the report.

Ms. Atwater affirmed Chairman Rhatigan’s admonition to be cognizant of the number of staff available to the Committee and noted that the ex officio members also served as a source of information and guidance in the preparation of the report.

Ms. Atwater related the process for holding quarterly and subcommittee meetings and the different options for putting together a report. She mentioned the possibility of partnering with other agencies to fund roundtables or conferences.

Ms. Atwater then took questions from the Committee members and addressed the clearance process and the status of the previous years’ reports.

In response to a question, Ms. Roach explained that prior to 2000, all reports to the President were delivered to the White House in a published format, but that since that time, PCPID has been advised that it may not publish any report without express permission from the White House. The Committee discussed the issue further and Chairman Rhatigan noted that this had been an ongoing conversation for several meetings. He acknowledged the frustration of not printing the reports, but stated his belief that just the dialogue taking place at Committee member meetings has an impact on people with intellectual disabilities because of the movement it generates.

Several members expressed their belief that advocacy organizations, private citizens and Committee members should contact the White House and urge them to release the reports for publication—including an official letter from PCPID. A discussion followed of the appropriateness of quasi-dissemination through the Freedom of Information Act (FOIA) provision that allows for the public to request a copy of the draft.

Mr. Hollingshead noted that one of the action items from the last meeting included writing two letters to the White House; one to request that the White House release the previous reports for publication, and one to request that the Committee receive a line- item in the budget.

Mr. Boles expressed his concern with the short timeline for the last report and suggested that the Committee allow for more time to complete the 2009 report. Mr. Weis recommended that the Committee not rush the report based on the upcoming change in Administration. Mr. Balkus noted that the ex officio agencies needed an appropriate amount of time to send the report through the clearance process.

Chairman Rhatigan turned the conversation to potential topics for the 2009 report and Harris Hollin implored the Committee to continue supporting the research applications subcommittee which could then contribute the research aspect to any topic chosen as the focus of the 2009 report.

There was a discussion of the role of ex officio members in choosing the topic for the annual report and their general role on the Committee.

The Committee discussed potential topics for the report including:

• Employment for people with intellectual disabilities—addressing the supports and barriers including transportation, benefits, institutional barriers, housing, education and transition from education to employment;
• Replacing the term mental retardation with intellectual disabilities in all Federal legislation and statutes;
• Research;
• Inclusion and the faith community (Ms. Starnes volunteered to draft an additional report on the topic); and
• Public awareness.

Mr. Hollingshead noted the importance of developing a well-defined structure for the report with a very precise list of action items in order to ensure that the report does not become too big for the Committee to adequately address in the appointed time.

The Committee then debated the use of the terms work and employment with some Committee members preferring the more broad term of work—encompassing all work activities, paid or unpaid—and others preferring the more narrow term of employment—encompassing only paid work. Suggestions were made for potential titles that would encompass all of the topics discussed during the session and a debate of those suggested titles ensued.

Several members noted that the topic of employment had not yet been officially voted as the topic of the 2009 report, but Chairman Rhatigan did note that employment/work

had received the most votes on the preference sheets distributed via email and at the meeting. Mr. Cole and Mr. Weis suggested that employment/work could be one topic under a larger umbrella of topics, but that it should not be considered the only topic.

Mr. Weis further noted that people should be allowed to participate where they feel they would be the most useful.

Mr. Rhatigan announced that the vans for transportation back to the hotel would be arriving shortly and that the Committee could pick up the discussion the following day. The Committee then discussed logistics for the following morning’s swearing-in ceremony and the meeting recessed.