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PCPID Meeting: August 3-4, 2015

Participants

Ex officio Members and Representatives

Susan Aramaki
Representing the Honorable Penny Pritzker, Secretary, U.S. Department of Commerce

Julie Clark
Representing the Honorable Thomas Perez, Secretary, U.S. Department of Labor

Michelle Aronowitz & Charlene Wills
Representing the Honorable Julian Castro, Secretary, U.S. Department of Housing and Urban Development

Yvette Rivera & Howard Caro-Lopez
Representing the Honorable Anthony Foxx, Secretary, U.S. Department of Transportation

Glinda Hill
Representing the Honorable Arne Duncan, Secretary, U.S. Department of Education

Brian Parsons (via telephone)
Representing the Honorable Jeh Johnson, Secretary, U.S. Department of Homeland Security

Stephanie Enyart
Representing the Honorable Wendy Spencer, Chief Executive Officer,
Corporation for National and Community Services

Leola Brooks/ Deborah Engler
Representing the Honorable Carolyn W. Colvin, Acting Commissioner, U.S.
Social Security Administration

Mary Kay Mauren
Representing the Honorable Jacqueline A. Berrien, Chair, Equal Employment
Opportunity Commission

Citizen Members

Julie Ann Petty, Chair
Susan Axelrod
Peter Berns
Jack Martin Brandt
Kenneth Capone
Dan Habib
Zachary W. Holler
Stacey Milbern
Lisa M. Pugh
Michelle Reynolds
Deborah M. Spitalnik, PhD
Ricardo T. Thornton, Sr.
Elizabeth Weintraub
Sheryl White-Scott, M.D.
Betty Williams

The Administration on Intellectual and Developmental Disabilities (AIDD)-PCPID Staff

Aaron Bishop
AIDD Commissioner and PCPID DFO

Madjid “MJ” Karimi, PhD
PCPID Team Lead

Sheila Whittaker
PCPID Program Assistant

The PCPID Virtual Meeting Proceedings

Roll Call

MJ Karimi, PhD, PCPID Team Lead

Dr. MJ Karimi started the April 7, 2015 virtual meeting of the President’s Committee for People with Intellectual Disabilities with taking a roll call, making housekeeping announcements, and providing instructions for a successful webinar. He turned the meeting over to Commissioner Aaron Bishop to provide greetings and welcoming remarks.

Greetings, Welcoming Remarks, and Presentation of PCPID Chair

Aaron Bishop Commissioner, AIDD
Designated Federal Official, PCPID

Commissioner Aaron Bishop welcomed participants and thanked PCPID members for joining the meeting. He stated that, since the last PCPID meeting in February 2015, the Committee has made a good stride in moving forward on the 2015 Report to the President (RTP), focusing on technology for people with Intellectual and Developmental Disabilities (I/DD). Commissioner Bishop added that the members will not vote on any particular subject during the virtual meeting; they will, rather, receive a presentation that explains the progress being made on the RTP. He stated that the purpose of the meeting was to set the right path and journey forward in completing the 2015 RTP before May 11, 2015, at which time seven PCPID members are scheduled to exit the Committee. After May 11, 2015, remaining Committee members will continue efforts to finalize the Report.

Commissioner Bishop turned the meeting over to the PCPID Chair, Ms. Julie Petty.

Welcoming Remarks, Introduction of the New Ex officio Representatives and Meeting Overview

Julie Petty, PCPID Chair

The PCPID Chair, Ms. Julie Petty, welcomed participants and called the meeting to order. She, particularly, thanked PCPID Workgroup Members for working around the clock to collect information on technology for people with I/DD in the following focus areas: Education, Community Living, Health and Wellness, and Economic Well-Being.

Chairwoman Petty also welcomed new Ex officio representative members from the U.S. Department of the Interior, Ms. Mary Pletcher, and the U.S. Department of Transportation, Ms. Stephanie Jones.

Approval of Agenda and Minutes (February 19-20, 2015)

PCPID Chair

Chairwoman Petty requested a motion to approve minutes of February 19-20, 2015 Committee Meeting. Ms. Liz Weintraub made the motion to approve the minutes and Ms. Lisa Pugh seconded the motion. The Committee voted, unanimously, to accept the minutes.

Progress on the 2015 PCPID Report to the President

Definition of Technology (SurveyMonkey)

Ms. Lisa Pugh, PCPID Member

Chairwoman Petty asked Ms. Lisa Pugh to provide a briefing on the result of surveymonkey completed by the members, aimed to define technology for the purpose of 2015 RTP. Ms. Pugh reported that a Workgroup (consists of: Ms. Lisa Pugh, Mr. Micah Fialka-Feldman, Mr. Dan Habib, Mr. Jack Brandt, and Mr. Mike Strautmanis) hold several conference calls and communicated through e-mails, to articulate and finalize a definition for “technology” to be used in the Report. She stated that a total of 17 members participated in the survey and some of them also provided separate comments on ways to re-word the definition of technology. Ms. Pugh mentioned some of the key words that keep coming up through the Workgroup discussions were: accessible, everyday life, reduce barriers, support, advances in science, and scientific applications. After developing a “Wordle,” the Workgroup defined technology as “the use of advances in science to support people and society, to reduce barriers, and to make everyday world more accessible.” Mr. Jack Brandt confirmed the accuracy of this information, on behalf of the Workgroup.

Ms. Pugh further explained that, in addition to the definition of technology, the Workgroup added to the conversation definitions that were brought forward by presenters in the last meeting regarding “cognitive design” and “cognitive accessibility” as well as some existing statutory definitions of technology that Workgroup wanted to clarity and provide context to on top of other definitions being used in the Report, such as “assistive technologies” and “universally designed technologies.”

Ms. Liz Weintraub raised concerned that individuals with I/DD may need an easy definition for the word “science” itself. Ms. Pugh responded that although the Workgroup members started with a technical definition first, they decided to breakout the words and also develop an easy-to-understand Wordle. Mr. Dan Habib added that the Workgroup made the language in the definition straightforward. He said that the idea of having the Report prepared in a format that has built-in support and access points for people with all abilities was discussed within the Workgroup several times.

Completion of the Workgroups Projects

Ms. Sheli Reynolds, PhD, PCPID Member

Chairwoman Petty asked Dr. Sheli Reynolds to provide information regarding lessons learned when identifying recommendations in each focus area. Dr. Reynolds started her presentation by stating that there are some major questions the Committee should think about. The first thing is that the concept of technology is very broad and complex, requiring a comprehensive and, perhaps, lengthy report to explain it. Dr. Reynolds asked members to consider what the Committee is ultimately trying to achieve with this Report. She added that the Workgroups, tasked to develop recommendations, were not aware of one or two overall aims of the Report. For example, the following questions kept being asked during the process: 1) Does the Report help readers understand how important technology is in the everyday life of all Americans? and 2) Does the Report tend to address cognitive support technologies that are specific to people with I/DD?

Dr. Deborah Spitalnik added that members also need to keep in mind the Committee‘s mission, which is to make recommendations to the President in improving the lives of people with I/DD. In other words, the Committee needs to have a narrow focus on how technology can improve the lives of people with I/DD. Dr. Reynolds responded that the Committee‘s Executive Order (E.O.) is intended to ensure the rights of people with intellectual disabilities and for them to enjoy quality of life that promotes independence, self-determination and full participation as it related to: a) expanding educational opportunities, b) assuring workplace integration, and c) expanding access to community living. She added that, if the Committee wishes to insert technology in this Charge, the E.O. can say, “We believe increasing access to technology, including cognitive technology, will ensure access to the aforementioned rights.” Mr. Ken Capone commented that “this is a true statement as technology continues to assist people with disabilities.”

Dr. Reynolds continued her presentation by posing the following question to the members. Is the point of the Report to bring attention to cognitive technologies or the general technologies? For example, society and long-term services do not recognize technology in the medical waivers. The Committee, therefore, needs to decide if the Report should address both of the aforementioned aims, or increase awareness around cognitive support technologies. She shared with the members that the 2007 PCPID RTP had a section about the cognitive support technologies.

Mr. Habib expressed belief that the Committee should reinforce the importance of technology in the lives of everyone as well as its particular benefits in the lives of people with disabilities. He added that, unfortunately, there is a lack of public awareness when it comes to what is possible through technology and what is available around cognitive support technologies. Therefore, the general awareness should be the major focus of the PCPID 2015 RTP. Ms. Leola Brooks agreed and added that this is clearly powered in the Developmental Disabilities Act (DD Act), especially with regards to the assistive technology services. Ms. Yvette Rivera reiterated that the Committee should explore both aims discussed by Dr. Reynolds. Mr. Zack Holler agreed and added that the Committee should focus on the importance of technology; but one problem is that in most cases technology is available, and is not being used due to its cost. Ms. Weintraub express belief that another problem is that people may think that an individual with I/DD is not capable of using technology.

Ms. Pugh stated that the Report has to be broader than just addressing definitions for cognitive support and cognitive design and technologies. She added that the discussions around cognitive support and cognitive design technologies get some of the access issues and help to promote better access to technology, specifically for people with I/DD. Ms. Stacy Milbern pointed out that she clearly understands the argument for both of these aims, and asked members of the Committee if they were leaning toward one way versus another. Ms. Betty Williams responded that she believes the Report should address both of the aims proposed by Dr. Reynolds; and added that, when talking about education, it is important to mention how people with I/DD can utilize technologies at a very early age.

Commissioner Bishop encouraged the Workgroups to keep in mind technology and how it improves the lives of people with I/DD and as a subset to have a focus on cognitive support technologies and, finally, develop recommendations in both of these areas. Ms. Rivera added that the Committee can also develop a toolkit of the technological resources to be included in the Report. Dr. Reynolds stated two things members have consensus on from the last meeting are: 1) technology as a topic, and 2) cognitive design principles as the format of the Report. She also added that some of the potential recommendations addressed by the Committee were general, and some were very specific. In addition, the Committee has gathered technology innovations that should be communicated with the public. Dr. Reynolds encouraged the members to consider looking at federal policies (versus practice and implementations and/or listing resources) and make specific recommendations in the Report.

Ms. Pugh advocated for the core and main topic of the Report to be on federal policy recommendations. Mr. Peter Burns suggested going beyond federal policies and discussing what the federal government can do in terms of programs, funding, and administration. Commissioner Bishop encouraged the Committee to consider federal policy recommendations inclusive of laws, administration, programs and funding and as a subtheme highlight technologies to help the reader understand what is possible through technology and explain what this might look like in terms of practice and implementation, using clear examples.

Ms. Pugh suggested that the PCPID staff develop a chart to illustrate federal policies and statutes, where technology is mentioned, and funding streams in support of technology for the use in each focus area of the Report. Ms. Susan Axelrod and Commissioner Bishop agreed, and added that staff should develop this chart in collaborations with PCPID Ex officio representatives. For example, at the Administration for Community Living, staff can look at the Medicaid Program, Assistive Technology Act, Vocational Rehabilitation Act, etc. and communicate that with the Committee later.

Commissioner Bishop suggested that the PCPID Workgroups meet on a weekly basis (April 13th, April 20th, and April 27th), recognizing that the process of developing recommendations may go beyond May 2015. He also suggested that the Workgroups finalize their recommendations by the week of May 4th and send their projects to Drs. Reynolds and Karimi. PCPID staff will compile this information and schedule a meeting in consultation with the PCPID Chair. Ms. Pugh suggested to have limited number of recommendations in each section of the Report. Dr. Reynolds stated that each subtheme needs to have at least three to five recommendations. Mr. Berns raised concerns that the suggested timeframe (May 4th) might not be realistic, considering the fact that the focus areas should be researched very well.

Related Questions, Announcements, and Next Steps

All Members

Commissioner Bishop suggested that the Workgroups continue with their projects every week as the chart for federal policies and statute is being prepared. Mr. Dan Habib, through the webinar comment box, suggested that the first draft of the Report be completed by the end of May 2015. Chairwoman Petty announced that the date for a face-to-face meeting will be determined based on the progress reported by the PCPID Workgroups. Commissioner Bishop shared with the members that PCPID will hire a support person to help the Committee and staff with writing the policy recommendations in the Report.

Ms. Pugh encouraged the Workgroup in charge of researching Economic Well-Being to contact the Department of Labor‘s Advisory Committee on Increasing Competitive Integrated Employment, when developing their recommendations. Ms. Rivera also encouraged the Committee to invite the Department of Transportation‘s team on Accessible Transportation Technologies Research Initiative (ATTRI) to PCPID meetings in the future. Commissioner Bishop suggested helping build awareness in the area of technology for people with I/DD by inviting various presenters and by posting their presentations on the PCPID website.

Dr. Reynolds stated that she will be delighted to organize the current recommendations and develop a template for each Workgroup as a guide to help with the next steps in the process. At this time, members had no further questions, comments, or announcements.

Meeting Adjournment

PCPID Chair

Chairwoman Petty made the motion to adjourn the meeting. Mr. Thornton made the motion to adjourn the meeting and Ms. Williams seconded the motion. The meeting was adjourned.

Action Items

Volunteer PCPID Workgroups

Meet to develop federal policy recommendations (re: technology for people with I/DD) during the weeks of April 13th, April 20th, and April 27th.

  • Education: Mr. Dan Habib (Workgroup Lead), Ms. Glinda Hall, Ms. Liz Weintraub, Mr. Zach Holler, & Mr. Ricardo Thornton
  • Community Living: Mr. Ken Capone (Workgroup Lead), Ms. Susan Axelrod, Ms. Yvette Rivera, Ms. Liz Weintraub, Mr. Ricardo Thornton, & Mr. Gary Blumenthal
  • Health and Wellness:Dr. Deborah Spitalnik and Dr. Sheryl White-Scott (Workgroup Leads), Ms. Susan Axelrod, Ms. Betty Williams, & Mr. Jim Brett
  • Economic Well Being:Mr. Jack Brandt (Workgroup), Ms. Leola Brooks, Ms. Julie Petty, Ms. Yvette Rivera, & Ms. Julie Clark

Volunteer Coordinator

Organize the recommendations and develop a template for each Workgroup as a guide to help with the next steps in the process. (Dr. Sheli Reynolds)

PCPID Staff

  1. Summarize the webinar discussions and send an e-mail update to the members byWednesday, April 8, 2015. (Completed)
  2. Convert the meeting recording into minutes by Thursday, April 30, 2015. (Completed)
  3. Schedule the Workgroups conference calls for the weeks of April 13th, April 20th, and April 27th. (Ongoing)
  4. Collaborate with federal agencies to develop a chart of federal policies and statutes in support of technology programs for individuals with I/DD by Thursday, April 30, 2015. (In Progress)

Last modified on 03/08/2017


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