PCPID Quarterly Meeting: September 26–27, 2011

Greetings, Call to Order, and Presentation of PCPID Chair

Sharon Lewis, ADD Commissioner and PCPID Designated Federal Official

The September 26–27, 2011 meeting of the President’s Committee for People with Intellectual Disabilities (PCPID) was called to order by Sharon Lewis, Designated Federal Official, and Commissioner of the Administration on Developmental Disabilities (ADD). Commissioner Lewis reviewed the agenda and highlighted issues to be discussed, including the Budget Control Act and Congressional funding decisions.

Welcoming Remarks and Introduction of Special Guests

James Brett, PCPID Chair

The PCPID Chair, Jim Brett, thanked Carol Wheeler for hosting a reception for Committee members at her home. Mr. Brett also acknowledged several meeting attendees, including Dawn Carlson of NIDRR and Gary Blumenthal, ex officio representative from NCD and former PCPID Executive Director.

Approval of Agenda and Minutes (June 16–17, 2011; July 19, 2011; and August l6, 2011)

James Brett, PCPID Chair

Chairman Brett requested a motion to approve minutes for the June 16–17, 2011, July 19, 2011, and August l6, 2011 Committee meetings. A motion was made. Mr. Brett gave the Committee the opportunity to discuss issues pertaining to the content of the minutes. No discussion was raised. The Committee voted, unanimously, to accept all three minutes of the three meetings.

Meeting Overview and Orientation

James Brett, PCPID Chair

Mr. Brett thanked Sharon Lewis and the PCPID staff for developing the agenda and arranging presentations. He noted that Committee members would hear from experts regarding the five focus areas (Employment, Income Support, Long-term Services and Supports/Community Living, Education, and Healthcare/Medicaid) of the Report to the President. He added that, following these presentations, a panel of self-advocates and family members of individuals with intellectual disabilities (ID) would address the Committee.

The Chair reminded members that during the August 16, 2011 conference call, several decisions were made by members regarding the content of the report and the process for preparing the document. It was decided that Committee members should compose a brief report to the President for 2011, based on the Budget Control Act and its impact on discretionary funding to people with ID. The Committee decided to focus on the impact of potential cuts or elimination of funding to programs in five identified areas, listed on the agenda. Experts would be asked to help Committee members gather knowledge in the specified areas. On the second day of the meeting, a facilitator would assist members in putting together the report. In order to have an impact on the decisions to be made by the Joint Selection Committee on Deficit Reduction (JSC), “Super Committee”, the report would need to be completed by the end of October.

Sharon Lewis suggested the Committee take time to dialogue and give ex officio members the opportunity to ask questions. Mr. Brett listed the five focus areas (Employment, Income Support, Long-term Services and Supports/Community Living, Education, and Healthcare/Medicaid) and four key questions submitted to presenters:

1. What are the core fundamental values that PCPID should consider about the importance of this priority issue for people with ID?
2. What are the risks in the current economic and political environment related to programs, services, and policies supporting people with ID under this priority issue?
3. What are the opportunities in the current economic and political environment related to programs, services, and policies supporting people with ID under this priority issue?
4. What is the potential economic impact of changes in policy and funding related to this priority issue?

Members expressed hope that some of the subject matter experts would be available to provide expert advice to help working groups put together priorities.

Deborah Spitalnik provided an explanation of how the Committee decided to focus on the Budget Control Act and discretionary funding and how these programs are crucial to the lives, well-being, and productivity of people with ID. She emphasized that ensuring the protection of current programs is necessary for full community inclusion.

Alison Hillman de Velàsquez mentioned that during the last ACA/Medicaid call, the speaker suggested that the Committee members focus on essential principles to underlie necessary supports, rather than dissecting policies. As follow-up to that speaker, PCPID staff sent out a document with principles identified in previous Committee meetings. This idea is something the Committee expressed interest in considering. The Chair liked this idea, and suggested that it be discussed on the second day of the meeting.

Peter Berns pointed out a number of possible budget outcomes. He asked Sharon Lewis to share her understanding of the government’s plan for these outcomes. Commissioner Lewis explained that preparation strategies vary by agency. She stated that, fortunately, most contingency plans are already in place, due to the anticipated government shutdown last spring, and added that offices are planning FY12 expenditures using the President’s budget.

Gary Blumenthal voiced concern that the solution to the budget issue might be worse than the problem. He suggested that the Committee may wish to raise its profile and work with constituency groups to alert people to the impact that cuts would have at the ground level.

Carol Wheeler asked Sharon Lewis how Super Committee discussions have progressed. Ms. Lewis replied that there has not been much progress, but that speakers could provide more complete information on that point.

Deborah Spitalnik suggested that Committee members consider how success would be constituted. She expressed belief that if the Super Committee reaches an agreement, current proposals will have a significant impact on people with ID. Government supports will most likely change dramatically and the kinds of supports that Committee members consider essential will receive considerably less resources. Dr. Spitalnik admonished that Committee members need to be optimistic and proactive, regardless. Commissioner Lewis added that the variability among states will become more pronounced, since states set their own priorities related to waivers and optional services based on state budgets. As a result, more responsibility and advocacy are necessary at the state level.

Mark Gross emphasized how important state issues can be. He noted that the Committee’s tone will be picked up by the states. Mr. Gross shared his belief that this meeting needs to focus on what to send out in the short-term.

Gary Blumenthal suggested that the Committee focus on how maintaining community services for people with ID can be efficient. Sharon Lewis noted that aligning efficiency with values and advice is part of the Committee’s role. Carol Quirk agreed. There is a notion that the current structures, including day programs and other programs, are the most cost efficient but other, more cost-efficient possibilities exist, which advance our values in the community. Clay Boatright agreed. He also suggested that the Committee focus on how to move the discussion beyond government resources. Mr. Boatright added that a large percentage of support for people with disabilities has come out of federal and state budgets, and that people with ID should not be subject to political whims for support because that is unsustainable long-term. He expressed belief that the Committee should look to other avenues of support, such as faith-based or commercial organizations. Liz Weintraub advised that this could be accomplished by helping individuals with ID get jobs.