PCPID Quarterly Meeting: June 16–17, 2011

Afternoon Session, June 17, 2011

Prospective Focus of 2011 Report to the President

After receiving permission from the Committee Chair, Dr. Dawn Carlson from the National Institute on Disability and Rehabilitation Research (NIDDR), Department of Education, discussed a 2003 report by the American Association of Intellectual and Developmental Disabilities, called Keeping the Promise. Dr. Carlson noted that this report provides a great resource surrounding post-secondary education issues. He also mentioned that NIDDR has a large pool of resources of knowledge of databases, and that if Committee members have information needs, or requests, he would be happy to help the members to gain access to these resources. Dr. Carlson suggested that members concerned with including valid suggestions, should look at that report.

Committee members engaged in an extensive discussion about their transportation, to the hotel and airport, scheduling of the next Committee meeting, FACA requirements for scheduling conference calls, and public meetings.

Chairman Brett returned members’ attention back to the Report to the President. He summarized the previous conversations, explaining how one section of the shorter 2011 report would contain a segment on history, in addition to including a section on current issues and challenges. The Chair also suggested that the Committee dedicate a portion of the historical section to Eunice Shriver. This portion could be taken from excerpts of Dr.Spitalnik’s article, with her permission.

Chairman Brett agreed with Dr. Spitalnik’s suggestion to have a short history in the first report that would reference to a larger one in the second report.

Dr. Spitalnik suggested using the original President’s Panel Report as a starting point, as it provides the beginning of federal funding and because the field of intellectual disabilities has changed drastically in the nearly 50 years since that report was published. She also stressed the importance of expressing clearly the themes of both the smaller and larger reports which she stated was essential to determining challenges. Dr. Spitalnik also suggested that the purpose of this report would be to promote the full community integration of people with intellectual disabilities. Ms. Quirk agreed with this suggestion and added that this purpose could be used as a bridge between reports.

Mr. Berns suggested two elements for the first report: one being a summary of how the state of the state is now, and one being short term or immediately realizable recommendations that would lead into the more in-depth, complicated recommendations of the second report. He noted that the former element should be supported by research from different sources that help to answer the question of how we are doing. The recommendations for the first report are those that are important for the President to hear this year instead of waiting for the following report.

Ms. Hardiman suggested that the Committee use something from the self-advocates in “Keeping the Promise" Report, as a staging area to measure the state of the state. Ms. Ramirez agreed with this and suggested that it be used in place of a whole history, which could be added to the longer second report. In response to Mr. Boatrights’ question on what would come in the later report, Ms. Hardiman offered using data from Braddock, Lakin and other sources to support the data taken from the self-advocates in the first report.

Ms. Hardiman shared that ADD currently has a funding opportunity announcement related to the collection of family support data, and the distinction between individuals who are living in a family home and the services and supports that they receive in-home versus supports to the family. She mentioned that when looking at the gathered data by David Braddock, one could conclude that every individual who lives in a family home and who is receiving supports as family support is counted. Dr. Spitalnik added that the metric under the research conducted by Charlie Lakin on family support includes factors that families might not say was directly family support (training that is open to families).

Mr. Berns expressed opinion that report should speak to where people are living, are employed, and whether they are being included in school. Mr. Boatright responded that he wishes to see something very specific and uniquely tangible adding. “There is a lot of work out there that speaks to the global state of today and which often reiterates the same point over and over.” Chairman Brett expressed concern that often professionals in the field do not know where the data is, and who will get access to it.

Dr. Spitalnik recommended considering a larger economic circumstance, which often has a tremendous impact on services by different States. She added that some of the movement to both managed care for health care and also managed long term care, through Affordable Care Act, is worthy of exploring. Chairman Brett reminded Committee members that the self-advocate presenter (Jill Eglé) encouraged themto take a look at employment for individuals with intellectual disabilities.

Ms. Quirk suggested that the Committee first look at employment, community living, education and then consider health care and some of the information about the providers, the preparation of the educators, lawyers, doctors and other providers, in the larger report. She said that it would be great to write about the 50th anniversary of the Committee and then rally around some of the self- advocate points. Dr. White-Scott suggested that Committee members look at it from a retrospective of what are some of the things that were asked before, what has been accomplished, and if any of that still is pertinent or also ties into some of the self-advocates' work around employment to conceptualize the short-term report. Ms. Edelsohn agreed and added that the short-term report should start with the voice of self-advocates.

Mr. Berns admonished that the Committee should be careful not to overplay putting out the voice of self-advocates when it holds just one self-advocate member. Ms. de Velasquez replied that we do not have to say we are speaking for self-advocates. The state has an obligation in promoting the active role of people with disabilities. In the case of “helping develop peer support”, it would be people with intellectual disabilities in developing policy, monitoring the implementation of that policy, and delivering services that they are receiving.

Ms. Wheeler mentioned that some post-secondary programs are related to the employment issues, because they give an opportunity for young people to continue to get the skills that they need. She added that the topic of independent living has also had an impact on residences. With regard to the post-secondary education, Commissioner Lewis informed the members that ADD has funded one of its university centers with a project called “Think College.” The ThinkCollege.net website has listed approximately 150 programs designed for students with intellectual disabilities. The Commissioner added that the challenge is about how do we bring students with intellectual disabilities into higher education and have their needs met. She added, the question is, what would the Committee be adding to the current conversation around post- secondary options, she said.

Mr. Falsey asked if there is a consensus about how Committee measures the state of the state, and if there are metrics or indicators that are acceptable. Mr. Boatright stated that using metrics could be a good starting point. On the issue of the post-secondary analysis, he suggested that the report span across developmental levels and levels of significance of disabilities to address what different programs are available. Ms. Quirk suggested developing a four-part report. The introduction referencing the 50th anniversary, Eunice Kennedy Shriver’s contribution, and the state of initial reports. The second section can include progress of where individuals with intellectual disabilities live, go to school, and how they spend their time as adults (work). The third section can cover the current hot spots. For instance, we talked about technology as a vehicle for communication; skills and attitude of service providers. The last section should include recommendations and progress.

Chairman Brett encouraged members to make a decision before the end of the day.

Ms. Hardiman emphasized the importance of full participation of individuals with intellectual disabilities in the community. She also mentioned the isolation and loneliness experienced by people with intellectual disabilities.

Ms. Edelsohn asked if conversation about housing, employment, and post-secondary education is geared towards individuals post age-21. Ms. Sugarman responded that to her personally, it is about prenatal care, birth, as postsecondary education to her does not solely mean education in the formal sense of college.

Mr. Berns asked if the Committee could come up with three to five trends that are changing the face of life for people with intellectual and developmental disabilities, and talk about the history and purpose of each trend in the report. For example, people are living in their own homes and apartments, we can give a little history around how housing and residential options have evolved in this field and why that is important and then talk what is known about how people live today, he suggested. He also stated that it would be helpful if PCPID staff could take on the task of compiling into a single document perhaps a list of all the recommendations from the past reports and indicate whether or not they were implemented.

Mr. Berns recommended the formation of a small volunteer group, in preparation of the next meeting, to gather the Committee members’ ideas and propose an outline for what this report should introduce. Chairman Brett asked for volunteers and four members agreed to complete this task (Burns, McKenzie Anderson, Spitalnik, and Quirk). Dr. Spitalnik suggested sending a framework to each member asking them to identify the most important trends. Ms. de Velasquez asked if it is possible to streamline the process through a survey monkey. Commissioner Lewis responded that this is not a possible option, because it would be considered being a vote.

The volunteer group will develop the framework questionnaire and share that with Laverdia by Friday, June 24, 2011 for dissemination among the members. Upon receipt of the three priority trends from all members, PCPID staff will organize them in a single template. Mr. Berns defined a “trend” as developments in the field that are changing life for people with intellectual and developmental disabilities.

Ms. Quirk asked Laverdia Roach if the Committee members could receive a copy of the notes taken by PCPID staff. Laverdia replied that members could have a copy of the informal notes taken by PCPID staff prior to preparation of the meeting minutes from the official meeting transcript. She added that PCPD staff will receive the transcript in 10 business days and start converting it into minutes, immediately. Ms. Quirk then asked the Chairman if there is someone to chair the workgroup. Chairman Brett took a prerogative and made the appointment of Dr. Spitalnik and Mr. Berns as the co-chairs of the workgroup. They both responded positively.

Ms. de Velasquez suggested that after compiling all the recommendations from previous Reports to the President, the single document be shared with various ex officio agencies and national organizations for identification of implementation.

Committee members decided to hold two conference calls; one for July 19, 2011 and one August 17, 2011. They also suggested convening a face-to-face meeting before the end of Fiscal Year 2011 (September 23–24, 2011 or September 26–27, 2011).

Chairman Brett thanked all the members for their support, and added that he values the members’ knowledge and passion in the field of Intellectual Disabilities.

Chairman Brett had a motion to adjourn the meeting. Meeting adjourned.