Click here for emergency preparedness and hurricane response information

PCPID Meeting: June 25-27, 2008

Participants

Ex officio Members and Representatives

The Honorable John R. Vaughn
Chair of the Board
National Council on Disability

RoseAnn Ashby
Representing the Honorable Margaret Spellings, Secretary, U.S. Department of Education

Richard Balkus
Representing the Honorable Michael J. Astrue, Commissioner, Social Security Administration

Jewel Bazilio-Bellgarde
Representing the Honorable David Eisner, Chief Executive Officer, Corporation for National and Community Services

Margaret Giannini
Representing the Honorable Michael O. Leavitt, Secretary, U.S. Department of Health and Human Services

Caffin Gordon
Representing the Honorable Mary E. Peters, Secretary, U.S. Department of Transportation

Mark Gross
Representing the Honorable Michael Mukasey, Attorney General, U.S. Department of Justice

Stephen B. Hollingshead
Representing the Office of the Secretary of Housing and Urban Development

Pat Leahy
Representing the Honorable Carlos M. Gutierrez, Secretary of Commerce

Mary Kay Mauren
Representing the Honorable Naomi C. Earp, Chair, Equal Employment Opportunity Commission

Sue Picerno
Representing the Honorable Elaine L. Chao, Secretary, U.S. Department of Labor

Citizen Members

Berthy De La Rosa-Aponte
Sambhu N. Banik, Ph.D.
Riccardo Barraza, Jr.
Jewel Bazilio-Bellegarde
Stephanie Preshong Brown, via audio conference
Ollie D. Cantos, VII
Eric Cole
Sharman Word Dennis
Carmela Vargas Gonzales
Harris Hollin
Casey Patrick O’Halloran, via audio conference
Stephanie Preshong Brown
Steve Rhatigan
Mary Margaret Sharp-Pucci
Linda Hampton Starnes
Stephen H. Suroviec
Dallas (Rob) Sweezy
William (Will) Tienken
Eric Todd Treat
Mary Ellen Zeppuhar, via audio conference
Charles Weis, represented by Sharon Bui Green

Guest Speakers/Presenters

David Michael Mank, Ph.D.
Director, Indiana Institute on Disability and Community
Professor, School of Education Indiana University Bloomington, Indiana

Robert G. Goldstraw
Project Manager and
Diana Zeitner Communications Coordinator DisabilityInfo.gov
U.S. Department of Labor
Office of Disability Employment Policy (ODEP) Washington, DC

Constituency Group Representatives and Other Guests

Annie Acosta
Carmen Cromartie
Christey Tucker
Julia Ward

Special Guests

The Honorable Daniel Schneider
Acting Assistant Secretary
Administration for Children and Families
U.S. Department of Health and Human Services

Allan I. Bergman
Anixter Center
Chicago, Illinois

Dr. Francisco M. Vasquez
The Museum of Disability History
Williamsville, New York

Staff

Sally Atwater, Executive Director
MJ Karimi
Laverdia T. Roach
Kodie Ruzicka
Sheila Whittaker

Minutes: Summary of Proceedings

November 19, 2008

Greetings, Call to Order, and Introduction of Staff

Sally Atwater, Executive Director and Federal Official

The November 19–20, 2008 meeting of the President’s Committee for People with Intellectual Disabilities (PCPID) was called to order by Sally Atwater, Designated Federal Official Representative and PCPID Executive Director, who welcomed meeting participants. Ms. Atwater stated that it was her privilege to work on the New Freedom Initiative (NFI) established by President George W. Bush 10 days after he was sworn-in to tear down barriers to full community inclusion for people with disabilities, including intellectual disabilities. She thanked Committee members for participating in the meeting and expressed, on behalf of the President, appreciation for their service. Ms. Atwater then addressed several housekeeping items, including: 1) location of restrooms; 2) lunch arrangements and location of the cafeteria; 3) availability of a hard copy of 2009 Report to the President…left at the hotel front desk for citizen members upon arrival for check-in, and placed in the Meeting Resource Packets for ex officio members; and 4) arrangements for van transportation to the Newseum. Ms. Atwater turned the meeting agenda over to PCPID Chairman, Steve Rhatigan.

Opening Remarks and Approval of the Minutes and Agenda

Steven C. Rhatigan

Chairman Rhatigan greeted meeting participants and announced that: Stephanie Preshong Brown would be joining the meeting via audience conference; although Tom Reilly arrived at the hotel the evening before for the meeting, illness prevented him from remaining for the meeting; Billy Edwards’ work schedule would prevent his participation; and Casey and Judy O’Halloran would be participating via audio conference. The Chair expressed his excitement about the 2009 Report to the President and stated his appreciation for the amount of input that came from ex officio and citizen members, and the work of the Project Officer, Laverdia Roach, and the writer, Dr. David Mank, and his team. Mr. Rhatigan noted that although Dr. Mank’s morning presentation regarding the report will occur via audio conference, his PowerPoint is available and will be shown during the presentation; and that he will call in again during the afternoon session when members have had an opportunity to discuss the draft report and presentation.

Chairman Rhatigan expressed belief that the issue of refining 34 voices into one is what the writer and Project Officer have achieved on behalf of the Committee.

The Chair called for a motion to approve minutes of the September, 2008 quarterly meeting. Mr. Harris Hollin entered the motion, which was seconded by Mr. Eric Treat. Responding to the Chair’s call for comments, Mr. Richard Balkus, ex officio representative from the Social Security Administration (SSA), referring to the statement on page 13 in previous minutes where he discussed the cost of living increase and the publication of the new Ticket to Work Regulations. He stated that he needs further clarification in terms of what he was talking about…adding that there’s a possibility that we can’t do it until October, he did not think the statement is correct. Ms. Kodie Ruzicka of the PCPID staff indicated that she would further check. Chairman Rhatigan asked if there were other comments. Hearing none, he called for and received approval of the minutes. Mr. Rhatigan then called for a motion to approve the meeting agenda. Eric Treat entered the motion that was seconded by Harris Hollin and approved by the full Committee.

Review of the Writer’s Role, Responsibilities and Methodology for Preparing the PCPID 2009 Report to the President

David Michael Mank, Ph.D. Professor, School of Education Indiana University Bloomington, Indiana

The Chair presented Dr. David Mank, who began by stating that it was an honor to work with the Committee and staff to write the Report to the President. He thanked Committee members for their thoughtful ideas, comments and input, noting that it was interesting to work to blend 34 voices [of 21 citizen members and 13 ex officio members] into one voice in the Report. He informed the Committee that Alice Porter, his friend and colleague, had been a great technical writer and that, together, they’ve come a long way in a short period of time. After sharing his pleasure with the title, Report to the President: Dignity Through Employment,” Dr. Mank stated that 99 percent of the suggested edits received from Committee members were reflected in the draft, and proceeded to present several highlights of the Report, including:

  • The photograph of members with the President in the Oval Office;
  • the Table of Contents; and
  • the emphasis on quality, individualized, full-time employment.
  • The major sections of the Report, each with a statement of recommendations that pertains to that section:
  • The Executive Summary, with recommendations all together in one place;
  • the Introduction, setting up the circumstances of why employment is one of the most important things that can happen in any life, including the lives of people with intellectual disabilities;
  • descriptions of the Current Employment Status of People with Intellectual Disabilities, defined by unemployment, under-employment, and segregated rather than community settings;
  • the Evolving Policy and Legal Framework that directs the USA;
  • the Need for Comprehensive Implementation;
  • promising Employment Practices, and research indicating what we clearly know is possible, highlighting a few stories that help to setup recommendations;
  • building an Education, a Resume and Experience highlighting high school transition and through life, highlighting volunteer experience where appropriate, highlighting post-secondary education as an important part, building not only the ability to work, but to invest in a career over time;
  • family and Systemic Supports, acknowledging that there are many, and that government programs have a direct effect on the extent to which individuals are working, have an incentive, or have a disincentive to work;
  • acknowledgments, with Committee’s name, Ex officio and Citizen Members, contributors to the September 8, 2008 PCPID-ODEP Employment; and
  • forum, participants and other contributants.

Dr. Mank acknowledged that the heart of any such Report is the recommendations given by member of the Committee. Thus, he highlighted many of these suggestions:

  • Encourage a Presidential Call to double the number of people with intellectual disabilities who are working in well-paid and integrated jobs in five years, beyond the 150,000 people estimated in community employment now.
  • Create a national public awareness campaign to build on a new wave of employment expectations. Employment should be a part of an adult life.
  • Achieve clarity of legislation and policy that focus on employment outcomes, with both incentives and working particularly with government agencies to make clearer statements about direction and the importance of employment.
  • Build and invest in the President’s New Freedom Initiative, specific to incentives to states, and try to understand how some states achieve greater success in promoting the employment of people with intellectual disabilities.
  • Encourage employers to hire people with intellectual disabilities in good jobs. Invest with employers in recognition of that fact. This investment should involve the business community with incentives for employers. It should also create ways for people with intellectual disabilities and their families to be active and informed about these kinds of initiatives with employers.
  • Promote employment, especially in the public sector where people with intellectual disabilities will have opportunities for quality employment in the same way that every other citizen has opportunities.
  • Promote large-scale demonstrations in states in order to fully implement employment outcomes in larger geographic areas. Many examples of high quality employment outcomes tend to be in pockets rather than wide- spread in a geographic area.
  • Look for opportunities for the federal administration to promote state Employment First agendas. That is, support initiatives or states that want to offer Employment First as a service and a support.
  • Promote national and community service for young people, fully integrating young adults with intellectual disabilities. This would expand community service opportunities and build experience, a resume, and an education required for successfully employed in the future. The Corporation for National Community Service is currently doing this in some ways.
  • Invest in the Education Act and the Rehabilitation Act, aiding the transition from education to future employment.
  • Invest in the Rehabilitation Services Administration in order to feed agencies to promote transition focus.
  • Address areas of incentives for individuals. Currently, because of asset limits and some of the structure of Social Security incentives, success or investment in the intellectually disabled can be made possible.
  • Look at existing resources, Medicaid waivers and Social Security work incentives, and ask how you can emphasize community outcomes.

Note: Dr. Mank then reminded the Committee of a previous engagement that would take him away for a portion of the meeting. He will be leaving at 9:50 a.m. and rejoining the meeting at 2:15 p.m.

Ms. Laverdia Roach invited Members of the Committee who suggested edits, questions, or concerns to share those with Dr. Mank. Specifically, Mr. Harris Hollin was invited to share his observation. Mr. Hollin sent a message the previous Friday afternoon regarding accuracy in the first line of the second paragraph on page 7 of the most recent draft of the Report. Dr. Mank had already made the change based on this comment and apologized for the mistake.

Mr. Eric Cole suggested that another bullet be added to recommendation ten. This bullet would develop dissemination strategies to remind the public sector of the information, communication, and physical access standards in Section 255 of the Telecommunications Act and Section 508 of the Rehabilitation Act. Because it was not submitted in writing, Dr. Mank asked Ms. Roach to e-mail this suggestion to him. He said that he would see how he could incorporate it.

Mr. Eric Treat suggested self-advocacy as the best option for transition. He also discussed the “Reach Beyond Greatness” program used in Wisconsin, asserting that this program should be brought into school districts. The curriculum was created by people with disabilities to become their advocate. Ms. Roach requested that Mr. Cole email that information to her as soon as possible, and she will make sure that Dr. Mank gets it in writing.

Dr. Sambhu Banik complimented Dr. Mank on his report, and had only one comment to make regarding the content. He could not see anything in the Report about the importance of assessment for employment; although, he did remember recommending that an emphasis be placed on the importance of assessment in Title II for appropriate adequate employment opportunities for people with intellectual disabilities. Dr. Mank pointed out that on page 24 under the rubric of discovering abilities is a process being called "Discovery" that includes a sentence on this topic. However, Dr. Mank agreed to see what could be done to clarify the issue. Ms. Roach suggested that Dr. Mank refer to the Forum papers in considering what can be done at this point. Dr. Banik’s paper on Assessment of People with Intellectual Disabilities for Vocational, Rehabilitative, and Employment Purposes was a part of the Forum papers. So he should have that in his record. Ms. Roach offered to forward it again, if he did not.

Ms. Berthy De La Rosa-Aponte thanked Dr. Mank for his work on the report. She also posed the following question: in the letter, when we talk about being the final Report, is this the final Report, or is this the final Report under this President’s Administration? Ms. Roach clarified that it will be the final report under this President’s Administration. Ms. De La Rosa-Aponte asked if that should be stated more specifically in the report, and Ms. Roach thought such a statement might add clarity.

Ms. De La Rosa-Aponte also suggested a change to the letter to the President. In the third paragraph, when “the issue of real employment with compensation” is addressed, she proposed a substitution of the word compensation for something more like “equal pay.” Compensation may not have the intended meaning. Chairman Rhatigan said they would discuss the letter later, during their session.

Next, Ms. De La Rosa-Aponte asked that, in the Executive Summary, the self-pity discussed by the President be added to the sentence that says “when people cannot work, they receive personal indignity, poverty and isolation.” Dr. Mank thanked her for the input, but expressed concern that there was not sufficient time to completely rewrite the report. Chairman Rhatigan said that he would handle the rewrite on the issue. Ms. Roach deemed it unnecessary to add another statement. Ms. De La Rosa- Aponte acknowledged that the report she had was probably not the most recent version, and may not be up-to-date.

Chairman Rhatigan invited any comments from members regarding the outline, and none chose to do so. Dr. Mank then was excused from the audio conference by the Chairman to attend his other meeting and return at 2:15 p.m.

After Dr. Mank left, Ms. Zeppuhar informed the committee that she had been having some technical difficulties and was unable to get through in time to speak with Dr. Mank. The Chairman assured her that she would have the opportunity that afternoon, and she said that would be fine.

Chariman Rhatigan invited Ms. Roach to continue with the proceedings.

Review and Status of Activities to Prepare PCPID 2009 Report to the President

Laverdia T Roach, Project Officer, PCPID

Ms. Roach reviewed the status of activities to prepare the 2009 Report to the President. She began by thanking Dr. Mank and the members for respecting the process put in place to prepare the Report.

All members attended an ODEP (Office of Disability Employment Policy) and the PCPID Forum. The papers from that forum provided the basis for the 2009 Report to the President. Ms. Roach specifically thanked the ex officio representatives and Neil Romano, the Assistant Secretary of ODEP at the U.S. Department of Labor, for providing the fiscal support for the Forum. She also acknowledged the concern of Dr. Banik about the inclusion of his paper and assured him that material from that paper would be used by Dr. Mank.

Members received an opportunity for face-to-face dialogue with the writer on September 10th. Dr. Mank found the meeting very helpful.

All of the information sent to Ms. Roach last year by members of the committee on the topic of employment was packaged and sent on to Dr. Mank. As members view the report, they will see much of that information reflected in the draft.

Ms. Roach also emphasized Dr. Mank’s exceptional work on the Report. She also thanked those who reviewed his documents and submitted comments in a timely fashion. Their timeliness allowed comments to be reflected in subsequent drafts. Increased attention will need to be devoted to the next draft since it will probably be the final draft. Members will want to review their comments, consider the comments made in this meeting, look at the report and begin thinking about voting approval. The sooner the Members are ready to approve the Report, the sooner the PCPID staff can submit the Report for review. Ms. Roach expressed the hope that this would be done in the next week or two. If that could be done, the Committee could have the final draft of the 2009 Report to the President by November 28, 2008.

Ms. Roach then asked if there were any questions. Mr. Stephen Hollingshead asked Ms. Roach if she was saying that she planned to vote on the Report before the final words were in it. Ms. Roach responded that members should see the next draft as very close to the one on which they will vote. Any concerns with the drafts should be voiced at that time.

Mr. Hollingshead also asked Ms. Roach if she anticipated any problem for the different departments. Did she see anything controversial or should it get quick approval? Ms. Roach saw no real concerns. She expected that Richard Balkus would work with the members and writers to make the language more palatable to the Social Security Administration policies.

Ms. Linda Starnes asked Ms. Roach if “Official Declaration of Understanding” to Approve the 2009 PCPID Report to the President” on the schedule was the current discussion. If so, was that just a revisit? Ms. Roach explained that it was indeed the current discussion and that the Chairperson would speak more about that later.

For clarification, Mr. Balkus asked if November 28, 2008 was the date that the final draft of the document would be submitted to the Ex Officio Members for voting purposes. Ms. Roach confirmed that it was. She expressed hope that members will be talking to their policy people all along and will expedite the report to the best of their ability. The goal is to get the report out to the current administration by mid-December, although this is late. Otherwise, the White House may not have an opportunity to review it.

Mr. Balkus stated that he had already submitted a prior draft to some of the key components that will be involved in the review process. Thus, he did not expect difficulties. However, the voting may take a week to ten days to get through the components once there is a final draft to work with.

Ms. Roach acknowledged Mr. Balkus’ comments, stating that she appreciates the system within which they are working. When comments come from ex officio members, she immediately forwards them to the writer. If ex officio representatives will begin informally passing statements, issues, concerns, and recommendations by their policy persons, there will be nothing in the final draft that will surprise them or their policy persons.

Mr. Casey O’Halloran joined the meeting via telephone call.

Chairman Rhatigan invited the ex officio members to update the Committee on the developments in each area starting with Mr. John Vaughn from the National Council on Disability (NCD).

Mr. Vaughn introduced himself and explained that he looks forward to working with the Committee as the usual representative reached the end of his term. He felt that the Report was nicely done. The recommendation on transition service, getting more money and beginning at an earlier age, is similar to one of his organization’s recommendations. At NCD, they put out an annual progress Report to the President and Congress. This year, it focused on current critical and emerging issues. This Report will come out in March at the Quarterly Meeting so there will be time for the new Administration to setup, and they will be able to hit the President and new Congress. The Committee may want to compose another letter to the incoming Administration as well. Mr. Vaughn also discussed the need for public awareness of intellectual disabilities and stated that the biggest issue today is societal attitudes.

Chairman Rhatigan thanked Mr. Vaughn for his contributions. The letter, which he recommended, will be discussed in the afternoon session. Mr. O’Holloran requested the chance to be part of that conversation since he was planning on writing a letter to the President as well. Ms. Atwater confirmed that the question would be taken up in the afternoon.

Following up with the comments of Mr. Vaughn, Mr. Richard Balkus mentioned his opportunity to attend the last quarterly meeting of NCD. This gave him the opportunity to discuss the research priorities of the SSA. The SSA staff are looking at the return-to- work issues and work incentives policy. The meeting gave helpful feedback.

Mr. Balkus then noted the following points:

  • The agency has issued a new strategic plan which is by far the best plan put out so far. It contains objectives for the disability programs. In the update, some highlights of those objectives are included.
  • Mr. Balkus expressed the hope of his group that legislation from the incoming Administration will help simplify the work incentive program for the public. Currently, the primary focus of work is the Disability  Insurance Program.
  • The Supplemental Security Program needs improvement. This includes doing a better job with reporting and recording earnings in a timely fashion.
  • The agency’s strategic plan calls for updating the medical listings.
  • An Occupational Information System needs to be developed to replace the
  • Dictionary of Occupational Titles which is now outdated.
  • The Ticket-to-Work program has made some progress so far.
  • In the Benefit Offset National Demonstration One-for-Two Project, the final design has been accepted, and they are moving into the implementation stage. Mr. Balkus talked about why this program is important and eliminates the cliff effect.

Mr. Rob Sweezy arrived at the meeting and his presence was recognized by the Chairman.

Ms. Bellegarde gave updates from the Corporation for National Community Service (CNCS). The work continues to include an increasing number of individuals with intellectual disabilities. Their most recent large event was the National Conference on Disability Inclusion in National Service that was held last October in Alexandria, Virginia. Prior to that meeting, there was a Benefit Summit where administrators of their disability programs in states across the country were brought together. The purpose of the conference was to talk about the HEART Act and what it means for the future. The conference attendees discussed how should workers in Social Security and National Service be educated to work together and include people with disabilities in national community services?

The conference included the Spirit of Inclusion Awards. The award for distinguished leadership in disability inclusion across the country was received by Ollie Cantos. There was also an outreach to veterans with disabilities at the conference. The conference was very successful, beginning a dialogue that they hope to continue.

Ms. Margaret Schaefer came on behalf of Dan Sullivan, the Office on Civil Rights and Civil Liberties, and Claudia Gordon. Ms. Schaefer talked about the continuation of work in the area of individuals with disabilities and other special needs pertaining to emergency management. A publication in this area, Emergency Management Planning for Special Needs Populations, is now available on the Federal Emergency Management Agency (FEMA) website and has been well-received so far. They are still actively working to publicize this guide, especially through conference involvement and presentations to state and local governments.

Ms. Schaefer also discussed disaster services that her organization provides and gave examples of their involvement in preparation for hurricane Ike. Feedback was so positive after the storm that the organization was given a mission assignment by FEMA to be part of the Emergency Support Function or ESF—14 Group. This will be a good opportunity to make sure that special need individuals are considered in recovery plans and communities are rebuilt to be accessible and inclusive.

Ms. Caffin Gordon, from the Department of Transportation (DOT), has been working closely with the Department of Homeland Security (DHS)/ Margaret Schaefer on emergency transportation for individuals with disabilities and special needs populations. DOT is responsible to ensure that all states, local governments, and tribal governments include persons with disabilities in emergency evacuations. The large number of entities responsible for this initiative has been a problem. It created confusion about which members should finance the actions of the group, causing delays in decisions which needed to be made quickly. Thus, they are now working on a policy initiative to ensure that, whenever issues arise, there will not be a question of financial backing. The most important thing will be getting the job done first and taking care of financial issues afterwards. DOT has also signed the Memorandum of Understanding (MOU) with the Department of Labor to make sure that they continue to update the DisabilityInfo.gov website.

Ms. Mary Kay Mauren from Equal Employment Opportunity Commission (EEOC) informed the group that the Commission continues to update its Americans with Disability Acts ADA regulations and supporting guidance documents in light of the recent ADA amendments. They are still working on their initiative to increase employment for people with disabilities in the Federal Government as well. She referred to the presentation by Ms. Jo Linda Johnson back in September for more information on that initiative.

Mr. Stephen B. Hollingshead stated that there was nothing new in his area.

Mr. Ollie Cantos stated for the record that he was speaking as a Citizen Member who happens to work at the Department of Justice (DOJ) and happens to know what’s going on there within the context of disability implementation. He was not speaking on behalf of Mark, since Mark did not give him authorization to do so.

Mr. Cantos talked about how the DOJ had recently incorporated the DOT’s internal website on emergency preparedness for people with disabilities into its own emergency management efforts. They are working to incorporate efforts from the DHS in the area of emergency preparedness as well. The Civil Rights Division of the Justice Department also puts out articles focused on employment of individuals with disabilities. This will be coming out shortly.

Chairman Rhatigan asked any ex officios on the phone line to identify themselves, and there were no affirmative responses.

Ms. Starnes asked Mr. Cantos if he knew the date when the article would be coming out and whether there would be public access to it online. Mr. Cantos responded by saying that the article would be out by mid-January 2009. Past versions can be obtained in Microsoft word format by emailing roxsand.c.devese@usdoj.gov. Individuals receiving the article may post, distribute, or send it.

(Morning Recess)

Chairman Rhatigan reconvened the meeting by introducing Mr. Bob Goldstraw to speak about the progress of disabilityinfo.gov.

Disabilityinfo.gov Update

Robert G. Goldstraw and Diana Zeitzer, U.S. Department of Labor, ODEP

Mr. Goldstraw talked about the bestowal of the Outstanding Partnership Award to the President’s Committee because of the precise and helpful input which it has provided. That same input has made for rapid advancement and improvement of the DisabilityInfo.gov website.

First, Mr. Goldstraw looked at a few statistics:

  • The number of visitors to the site was stuck at a little over 5,000 per day for a while. It has recently increased by 33 percent to more than 6,000 visitors daily or almost
  • 200,000 per month.
  • In 2007, the site had about 1.8 million visitors.
  • This calendar year it will likely have more than 2 million visitors.
  • The number of subscriptions has also increased dramatically to about 52,000.

This disabilityinfo.gov site should be used as a method for communicating. Contact Mr. Bob Goldstraw or Ms. Diana Zeitzer, directly, to add content to the webpage.

Presentation by Diana Zeitzer

Mr. Goldstraw then turned the time over to Ms. Diana Zeitzer to go through the outline forDisabilityInfo.gov. The website organized by categories which are listed across the top of the page. In addition, there are resources at the state, local, and national levels. They would be happy to post any resources applicable to the site. Ms. Zeitzer encouraged anyone who had not previously done so to subscribe to the site in order to know what type of information it includes. Then, she gave some additional information about the resources on the website. In the near future, DisabilityInfo.gov plans to improve the search function on its site, making it easier to locate the intended materials.

Mr. Vaughn asked if they had reached out to organizations for the aging population. They had spoken with people from the American Association for Retired Persons (AARP) and gotten the link to DisabilityInfo.gov on the AARP Resource page; however, Ms. Zeitzer is still working on getting the link placed more prominently. They have spoken to a few other aging organizations like HHS, ALA and the CMS Caregiver Initiative as well.

It is more difficult to reach this target population since the term “disability” carries some stigma. Consequently, the aging population has not wanted to be part of the disability community and has not recognized themselves as part of that population in the past. This thinking has not necessarily changed in individuals, but organizations that represent the population have been more open to connections.

Mr. Cantos asked if information is already posted or prepared for posting on the disability related policies of the President-Elect as well as other disability related information having to do with transition. Although it may not be posted on the website, they are preparing a transition Report for DisabilityInfo.gov which should include where we have been and where we hope to go.

The website still needs some work. It needs to be simplified and more user-friendly if the average person is supposed to be able to find what he or she is searching for. Currently, users find different information when using the categories to search and using the navigator. However, a tagging process is currently underway which should make the navigator more effective.

Since the staff of the website is small, they cannot keep up with every new development. Thus, they count heavily on contributors to bring them information and make sure the latest material gets on the site. Mr. Goldstraw requested that, as soon as the Report to the President for 2009 comes out, someone inform him. New information can usually be added within one day.

Ms. De La Rosa-Aponte suggested that a link be added to success stories about individuals with intellectual disabilities who have been self-employed. This would allow website viewers who want more information about the featured story to have easy access to that information. Mr. Goldstraw thought he could accomplish this by making a sub-folder under Self-Employment. This could turn into a “share your own stories” section where people can submit stories. He thought he would be able to add this section immediately.

The site will be redesigned soon with the intention of making it more interactive and consistent with big interactive sites and social networking sites. Recent changes with government websites are allowing movement in that direction. Eventually, they want the site to be more customizable, so that individuals will not have to see anything that does not interest them.

Mr. Goldstraw expressed some brief concerns about Web 2.3 since he is familiar with Web 2.0. Mr. Eric Cole proposed a solution and volunteered to assist Mr. Goldstraw in setting everything up. Mr. Cole thought they could connect to other search engines and pull from those search engines as well. He also felt that the ODEP publication was fabulous and should be available online if it was not already available. Ms. Sue Picerno said she would check into that. There is an electronic version being put together, but she did not think there was one available online. As soon as that becomes available, Ms. Zeitzer will put it up, and Mr. Cole will disseminate it to their constituencies.

Ms. Linda Starnes asked about the parameters in place for the content on the website: what is allowed to be put onto the site? Are the guidelines the same for the local level? Has anything evolved since this was last discussed? The parameters have not evolved. About half of the sources come from .gov websites. The rest were .org, .edu, and .us. This does include some faith- and community-based resources. When it gets down to local governments, most of the resources for those with disabilities do not come from the Federal Government or even state government. The only restriction is the exclusion of profit-making entities.

Because the website excludes profit-making entities, Ms. Starnes questioned the previously discussed section regarding self-employment. The featured individuals would be making a profit. Up to this point, the problem has been dealt with by having a warning pop up that tells the person that the site they are about to visit is not necessarily supported or endorsed by the government. The exact rules, however, are still being figured out. They should be able to put up success stories that do not link to a particular company or business. They still have not been told whether they can link to .coms.

Ms. Starnes added the suggestion that anyone who has a chance to speak in public might spread the word about DisabilityInfo.gov, letting groups know what a great resource the website can be.

Mr. Casey O’Holloran suggested employment coaches as a possible addition to the site.

In critique of the website, Ms. Mary Ellen Zeppuhar added that the links could be a bit more general and user-friendly. She also presented some ideas for the redesign of the website. Mr. Goldstraw expanded on her ideas, explaining that the website needs to be easy to navigate. Eliminate anything about the site that impedes, among other people, people with intellectual disabilities from finding what they’re looking for. If it takes a long time for a person to find what he or she is looking for, the site is useless.

There are many things that they have planned for the redesign that they expect to implement in the first quarter of next year. This will include the removal of irrelevant text. A quick link section will be added to the home page. Stories of individuals with disabilities with great achievements will be featured.

Mr. Eric Cole brought up a product called Work World (workworld.org) with a number of features and a health feature available at no cost. It quickly tailors results to your geographic region. He suggested that they might want to add something like this to DisabilityInfo.gov. Mr. Goldstraw agreed to bring the idea to the information technology team.

Ms. Mary Ellen Zeppuhar asked if the website was also accessible for people who use screen readers and if it filled all those requirements. Mr. Goldstraw assured her that they are. However, since the site is a web portal, the connecting sites may not be accessible. In order to help this problem, they could make an effort to lead the user only to sites that meet the requirements for accessibility. However, that type of restriction would eliminate a lot of the content. They can make the website completely accessible, but not all the sources from which the website pulls. Ms. Sharman Word Dennis inquired whether the site talked yet. Unfortunately, the site does not talk. Mr. Goldstraw did speak with the information people about it.

Mr. Ollie Cantos asked if there is information on the website about how to write accessibly for people with developmental disabilities? He knew that such a guide existed. Ms. Zeitzer said she would check online to see if she could find the publication. If it’s available online, it will be up. Mr. Cantos will email the link for the guide he talked about.

There is an excess of material on the website. One goal right now, as mentioned by Mr. Goldstraw, is to go through everything on the website and dump what may not be of the greatest use.

Mr. Hollingshead discussed a strategy to get the websites which link into DisabilityInfo.gov to become accessible. Since DisabilityInfo.gov generates hits for the sites, they can control which sites get more hits to some extent. The content providers can then be pushed, once they realize that this website is effecting how many hits they receive, to invest in accessibility.

Members discussed various ways that the website might be improved. For example, the website’s search engine could scroll other connected search engines and return those results as well.

Mr. Goldstraw closed the presentation with an invitation for continuing comments to improveDisabilityInfo.gov. Chairman Rhatigan dismissed the participants for lunch, to reconvene at 12:45 p.m.

(Recess for Lunch)

Afternoon Session

Chairman Rhatigan reconvened the meeting and introduced the itinerary for the following hour. The meeting was instructed to split into four Focus Groups and discuss thoughts on what they heard from Dr. David Mank. The Chairman informed members that, after an hour, there would be a break and Dr. Mank would rejoin the group.

The Focus Groups met and reconvened to Report out.

Focus Group Report on Preparation for Employment

Ms. Linda Starnes reported for the sub-group dealing with Section 4, ability and education, a resume, and experience. The sub-group members began by making a record of all the typos that were found in the draft. Then, they looked more globally for comments regarding content or larger pieces of formatting. Following are some of the review comments and suggested corrections:

  • A problem was found with the use of the acronym “ID” in place of “intellectual disability” without specifying the meaning of the acronym.
  • There needs to be a disclaimer on the usage of “mental retardation” and “MR,” explaining that the two are synonymous with intellectual disabilities. The older term is being used in that particular instance.
  • The vignettes used need disclaimers. Many of the individuals in the vignettes have other conditions, which are mentioned, in addition to their intellectual disabilities. For example, autism and traumatic brain injury are both discussed. Unfortunately, the text does not clarify that these conditions are not synonymous with intellectual disabilities. Since the vignettes came prewritten, a disclaimer is necessary to clarify the message.
  • On page 28, there is need for rewording of the last sentence of the first paragraph. The sentence should read, “individuals with intellectual disabilities are ready to work when appropriate technological and other supports are provided as needed, to facilitate ongoing employment career success, and economic self-sufficiency.” The intent is not to give the impression that people with intellectual disabilities could only work when provisions were made for them.
  • On page 28, under “Transition From School to Employment,” at the start of the second paragraph where it says “leaving high school,” the final part of that sentence is left out. This will exclude, “up to age 21 where graduating from special education programs.” Not everybody with an intellectual disability graduates with a special education diploma. Instead, state that “no less so for young people with intellectual disabilities.”
  • On page 29, there is need for a small piece of data to go with the text about post- secondary education.
  • On page 30, there is need to use wording that will strengthen the sentence that talks about the Higher Education Opportunity Act.
  • Under “Recommendation” on page 30, the wording needs to be changed under the bullet. The phrase “of all race and ethnicity,” will become “of all ages and backgrounds” since even very young people, with or without a disability, can be involved in volunteerism.
  • Finally, they need to do some formatting in the section by moving the summary up before the “Recommendations” as it is in the other sections.

Focus Group Report on Public Awareness

Ms. Mary Ellen Zeppuhar discussed this group’s review of the section:

  • They discovered a problem with redundancy between the first paragraph on page 5 and the first paragraph at the top of page 7.
  • On page 9, Recommendation 3, sub-bullet 2 when it talks about developing a unified statement for employment for people with intellectual disabilities, it should probably be the Department of Education (ED.Gov) versus the Department of Energy (DOE).
  • The stress needs to be on Reports of public awareness in general, going beyond the issue of employment.
  • They would like to look into cross-referencing the recent NCD Report on transition with recommendation 11.
  • Another correction needs to be made on page 22, in the last sentence of the last paragraph, under the section heading “Coming Into the Mainstream.” The report talked about technology solutions and assistive technology. This needs to include a sentence that says something about services provided by programs, such as the Job Accommodation Network (JAN). This organization helps employers to determine practical, low-cost, and sometimes no cost accommodations to help support workers with intellectual and other disabilities. A toll-free number and a website should also be included. Accommodations do not necessarily have to be technology-based or expensive.

Ms. Zeppuhar agreed to email corrections to Dr. Mank immediately.

Focus Group Report on Employment Supports and Benefits

Focus group members also suggest that the Report reference and acknowledge the existence of the new strategic plan of the Social Security Administration in a way that was not offensive.

Highlight one of the stories from the report. It would be left exactly where it is, but also printed on the inside of the front page of the Report. As the Report opens, that story sort of sizes it up. The Microsoft story and the Starbucks story were both recommended as possible options.

Since the Report may be read after the 20th of January, 2009, use the words "the intent of the New Freedom Initiative" or refer to the New Freedom Initiative as an Executive Order, better known as the New Freedom Initiative. This should give it a more neutral standing.

Focus Group Report on Research

Mr. Harris Hollin started by commenting on the success of the procedure used to produce the Report and how easy it was to work with. He also thanked the Committee for cooperation and help received. Mr. Hollin then made two immediate suggestions:

  • In the future, the drafts of meetings or the Report should be dated so that recipients know which is the most recent.
  • Drafts should be tracked so that the entire document does not need rereading for every change.

Next, Ms. Mary Margaret Sharp-Pucci expressed pleasure with the way the research fit into the Report on employment as a whole. Most of the contribution of the Research Focus Group can be found on page 14. Emphasis is placed on the genetic and syndrome-specific intellectual disabilities which make up 30 percent of intellectual disability populations as a whole. This section was also able to highlight individually tailored supports and strategies. The adaptation of environments came out of that research section.

Research permeated the rest of the report also. Programs, recommendations, or strategies that are effective are primarily based on research. In addition, they were able to form a task force based on a research question: what factors differentiate between the top states and the bottom states?

After Ms. Sharp-Pucci finished, the Chairman proposed a ten minute break. Before the break, Ms. Laverdia Roach requested that each of the Focus Group Chairs email their to her, so that she could be sure that all suggestions are received and communicated to the writer as soon as possible. She then reminded members that the date was theNovember 19, 2008 and they get the final the November 28, 2008.

(Afternoon Recess)

Chairman Rhatigan reopened the session and pointed out that Dr. Mank was back on the phone. He then briefly discussed the proceedings that took place during Dr. Mank’s absence.

Dr. Mank was told that Ms. Roach would have comments coordinated with the sections in the existing draft by Monday. Dr. Mank requested that he have the comments by Friday instead. Ms. Roach said that she would send the rewordings as soon as she received them from members no later than Monday. Ms. Linda Starnes’ corrections will definitely not be in until Monday. However, he should receive some corrections Friday with which to start the rewording. Ms. Roach would not be sending anything after Monday.

Dr. Mank expressed a concern about the deadline. Ms. Roach assured him that she would get him the information in the area of Employment Support the next morning. She would have the information on Preparation to him as soon as Ms. Starnes got in front of a computer, which they would try to make that happen that day.

Mr. Cole thought he would be able to get his report to Ms. Roach by that evening. Ms. Roach thought she would be able to get the information out to Dr. Mank by no later than noon the next day.

For the benefit of Dr. Mank, the sub-committees briefly presented their conclusions again:

  • Ms. Starnes asked if “through,” in the title of the Report, was meant to be capitalized. Ms. Roach said that she would look into the question and get that information to Dr. Mank the next day. The consensus of the Focus Group Members was that they wanted the word capitalized.
  • Instead of putting “ID” in the report, Dr. Mank suggested that “intellectual disability” seems to follow better.
  • A disclaimer needs to be copied from the 2008 PCPID Report and inserted into this draft of the report, explaining the usage of the term “mental retardation” or “MR.” Ms. Roach will email the 2008 Report to Dr. Mank so that he can make this correction. There is already a brief explanation of this usage at the beginning of the draft, where it talks about definitions used in the report, but that explanation is not believed by most of the Focus Group members to be sufficient.
  • Disclaimers are also to be attached to each of the vignettes, so readers can understand that each of the featured individuals does have an intellectual disorder even if there are additional conditions mentioned. The Starbucks story may need to be excluded in this case because the individuals involved would prefer not to be identified as intellectually disabled. Dr. Mank will check with the people that know her family.
  • Ms. Starnes observed that a formatting error should be corrected. In Section 4, the Summary section was listed at the end on page 31 after recommendations. However, in other sections of the Report, the summarizing came just prior to the Recommendations.
  • Ms. Starnes brought up the previously mentioned issue on page 28 in the last sentence of the first paragraph that discusses the readiness of those with intellectual disabilities to work. She presented her rewording, and Dr. Mank said that he would have to look at it in the context of the paragraph. Ms. Roach and Dr. Mank will be in touch regarding this rewrite.
  • Another issue on page 28 can be found under the “transition from school to employment” at the beginning of the second paragraph. They would prefer to simplify the sentence by saying “no less so for young people with intellectual disability” because not everyone goes all the way to age 21.
  • Mr. Hollingshead also made another suggestion on the same page, a few sentences up. He felt that the word “all” should be deleted from the sentence that reads, “all individuals with intellectual disabilities are ready to work.” Ms. Starnes informed him that it had already been deleted.
  • Ms. Starnes asked if anyone had researched whether youth with intellectual disabilities who receive post-secondary education are more likely to be competitively employed. Along the same lines, they might highlight the fact that youth with intellectual disability are perhaps even less likely to make it into post- secondary education than others. Dr. Mank informed her that youth with intellectual disabilities are included in broader studies, but are not disaggregated. Thus, they cannot yet be examined separately.
  • The sentence on page 30 about the Higher Education Opportunity Act needed rewording. They might want to stress the limited amount of data available because the Higher Education Opportunity Act and the research data are both so new. In the next report, they may want to look at whether or not it made a difference to have these opportunities. Dr. Mank thought that the current point was to just get attention to the issue.
  • Under Volunteering, in the middle of the first paragraph, there is a sentence talking about how volunteering can confer social, emotional, and even physical benefits consequently “being.” The word being needs to be removed.

Titles and organizations were listed for the presenters in some of the draft, but were excluded in the latest draft. Since not all the presenters were mentioned in the reference section, they should list the name, the title, organization, and city/state of the presenters. Ms. Roach informed Dr. Mank that this information was available on the Open Forum


Last modified on 03/08/2017


Back to Top