PCPID Quarterly Meeting: June 16–17, 2011

Discussion Regarding PCPID 2011–2012 Agenda

All Members

Chairman Brett reconvened the meeting with housekeeping notes which included: time management; transportation; and lunch accommodations. He then introduced discussion of the 2011–2012 agenda. The Chair recommended that members keep in mind the timeframe for preparing to the President, as presented earlier by Ms. Lewis and Ms. Roach, and the resources currently available to the Committee. He explained that, if data collection plays a role in the subject matter recommended by a member, it will be that member’s duty to collect the data as there is no staff available to do this.

Committee members shared input about the writing and framework of the report. Laverdia Roach explained that there are options available to put the report on the Internet, and publish a limited number of printed copies. She mentioned the past precedent for the recruitment of a writer, and noted that the cost to print fewer hard copies would be significantly less if basic dissemination through the Internet. Ms. Lewis spoke on the current trend of submitting reports electronically to the President and Congress, instead of through printed media. She also stated that, although there would likely be a writer, the majority of the report’s content would still need to come from the Committee members.

Dr. Spitalnik suggested that the Committee think about the report in an 18-month framework, with consideration of the 2011 and 2012 report in the framework of a larger mission/goal. This is to help the Committee think broadly, expansively, and constructively as a single unit.

Ms. de Velasquez suggested that members whose interests lie in areas outside of the focus of the 2011 report could take the time to research material for what will be submitted 18 months from now.

Ms. Quirk stated that, based on conversations from the previous day, the history of PCPID portrays people with ID as being disrespected and devalued and that these individuals have expressed their desire to own homes of their own, make their own choices and be included in life in the same way as everyone else. They also wish for a means of communicating their thoughts to the community. Secondly, she stated that the focus of today’s Committee discussion appears to be on service providers such as medicine, legal advice, education, etc. Ms. Quirk speculated, therefore, that the 2011 report should address the presumption of confidence, communication issues and, overall, be more conceptual. And, for the 2012 report, the notion of competence and providing everyone with an opportunity to communicate could be its basis with an overlapping focus being the lack of respectful and content-heavy preparation of professionals in providing service to people with ID.

Ms. Sugarman emphasized the importance of respect, knowledge sharing, and community acceptance. She expressed a desire to take a broad sweep across the significance of presumption of competence and balancing the intellectual abilities with the realities of the situation.

Mr. Berns presented the idea of making a descriptive piece on what the world looks like for the people who are not served by the system, or making a comparison of what the situation is like for people who are served versus those who are not. Ms. Roach asked how the Committee would get the data for those individuals who are outside of the system. Mr. Berns recommended starting with a literature review, then trying to bring together information from other sources in a way that can tell a story. He noted that there is a fair amount out there, yet information is piecemeal, and has not been pulled together to make it into a story. Mr. Berns supported Dr. Spitalnik’s idea of thinking of the report in terms of an 18 month framework and developing something in 2011 that is just a step towards the greater piece. In terms of discrete topics, he suggested saying something specific about people waiting for services as well as on those who are not served in the system. He thought the Committee could develop a report focused on the state of self-advocacy in the country and the issue of family support.

Mr. La Mell advocated for the Committee focus to be a little broader, especially under time constraints and with limited resources. He suggested the education has to be beyond our field. He recommended talking to the public, and stressed getting support from them and reaching out to them in their terms realizing what people with intellectual disabilities need. Ms. Lewis commented that, on the autism front, there is a separate Committee specifically focused on autism issues.

Mr. Falsey announced that he would defer to all the other experts on what the substance of the report should be. He agreed with Dr. Spitalnik’s point of using the Committee’s anniversary as addressing the issues such as communications and use of technology.

Ms. Ramirez stated she is driven by what was heard from self-advocates, and recommended their participation on the Committee. She suggested, if there are initiatives that are in place already, we have some movements that PCPID might tag onto and give more emphasis to, such as community, because that encompasses employment and transportation. Ms. Ramirez offered that is something that we could really focus on.

Ms. Hardiman described her input from perspective managed care, noting that there is a dwindling pool of workers to support people in managed care happening all around the country. She said that she loved the idea of the voice of self-advocates, but felt there are some huge and extreme challenges that she did not know how to incorporate into the report.

Ms. de Velasquez expressed if there is a way to make every targeted recommendation to people who develop disability curriculum that they have to mainstream disability in all their curriculum development; whether lawyers, doctors, or educators to come out with some strong recommendation and implementation having that be a part of something that talks about the right to live independently, linking that to Obama’s “Year on Community Living,” trying to pick up threads within the Administration, but having something that we do now a piece of something larger that highlights the right to be included meaningfully in the community.

Mr. Boatright hoped the Committee would introduce something new and that is something tangible. He liked Dr. Spitalnik’s idea of something, which starts in 2011, which is a precursor to a stronger body of work for 2012, there is a process flow. He was also impressed by Mr. Berns’ suggestion of looking outside the system because most of the work that is done looks at the system and the system right now is largely the government-orchestrated system. He suggested exploring what is going on outside the system is worth identifying and bringing forward, leading to the next step. He shared Carol’s concern for people who do not communicate in a traditional style, citing the example of what a difference technology can make for people with autism and intellectual disabilities. When equipped his children with an iPad, he saw new talents and behaviors emerge.

Ms. Edelsohn expressed support for the inclusion of self -advocates. She also noted that employment is a very important theme.

Dr. White-Scott talked about the importance of addressing public service, education, and awareness.

Dr. McKenzie Anderson stated that after she watched the video, Life in the Shadows, she decided that the country has made great advancements. She suggested that the Committee might be remiss if it did not recognize the 50 years of advancement with a report to the President as it relates to where we have been, where we are now, where we are going.

Dr. Spitalnik recommended the topic of the full participation of people with intellectual disabilities in their community as the long version of the report. She also talked about the funding challenges for other topic/themes/trends. She encouraged the members to create the blueprint for themselves and raise awareness of what the challenges are.

Ms. Wheeler applauded Dr. Spitalnik’s idea for bringing it all together. She advised that the goal was to review the challenge list and focus on a few priorities.

Laverdia Roach reminded members that they have an audience of one. She stated the purpose of the report is to inform the President. Mr. Balkus concurred with Laverdia. He stated it is an opportunity to not only speak to the President but the rest of the Administration. He noted that it comes down in terms of identifying it as the challenge and then providing information there that would help get attention to the issue. Mr. Balkus continued it is very important in providing advice in terms of finding a way to get the attention of policy makers, which translates into some type of change.

Mr. La Mell raised the question whether the focus areas are going to be determined by consensus or by vote?

Commissioner Lewis directed the members to go back to their mission as stated in the charter. That is, promoting full participation through the development of advice and recommendations. She encouraged the Chair to determine the approach before determining the focus, and suggested that a decision on process first be made, and what the Committee would like to accomplish for the December 31, 2011 deadline; and then consider process for the end of 2012, and the relationship between the two.

Ms. Quirk recommended framing it as a 50th anniversary state of the state for people with intellectual disabilities. She suggested the challenges could become the national priorities that must be addressed which converts to our advice. Then the 2012 report could be the Committee’s decision after it has worked together and gotten to know each other, as individuals; then select of those priorities that, as a group, they want to address.

Dr. Spitalnik reminded members that there is a lot of work going on now within DHHS on the long-term care provisions of the Affordable Care Act. She stated that the committee should want to make sure, the money follows the person, not only addresses nursing homes for people who are older but really takes into account the needs of people of all ages with developmental disabilities.

Chairman Brett stated that what the Committee is going to do is two reports: one for the end of this year, much smaller, much more compact, and the longer one would be the 18-month where the Committee will address challenges and recommendations. Chairman Brett asked the members to develop the issues before attempting to create recommendations. Ms. Roach reminded members to advise the Chair about any role that he might take to ensure that the recommendations are addressed.

Mr. Berns asked his fellow members to think of the short-report in terms of the retrospective of the statement of the current—the current state of affairs and some immediate opportunities. Dr. Spitalnik responded that she would not suggest this approach because it is labor intensive.

A motion to develop a 2011 report that will serve as the basis or the framework for the 2012 report that includes strong recommendations was approved.