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PCPID Meeting: November 14, 2011

Meeting Announcement

Department of Health and Human Services, Administration for Children and Families


President’s Committee for People with Intellectual Disabilities (PCPID)


Notice of Committee Meeting via Conference Call


November 14, 2011, from 1:00 PM to 2:30 PM EST. This meeting, to be held via audio conference call, is open to the public. Details for accessing the full Committee Conference Call, for the public, are cited below:

Toll Free Dial-In Number: 800-779-1627
Pass Code: 7340316

Individuals who will need accommodations in order to participate in the PCPID Meeting via audio conferencing (assistive listening devices, materials in alternative format such as large print or Braille) should notify Genevieve Swift, PCPID Executive Administrative Assistant, at, or by telephone at 202-619-0634, no later than Wednesday, November 9, 2011. PCPID will attempt to meet requests for accommodations made after that date, but cannot guarantee ability to grant requests received after this deadline.


Committee Members will review and approve the 2011 PCPID Report (Letter) to the President.

Additional Information

For further information, please contact Laverdia Taylor Roach, Senior Advisor, President’s Committee for People with Intellectual Disabilities, The Aerospace Center, Second Floor West, 370 L’Enfant Promenade, S.W., Washington, D.C. 20447.

Telephone: 202-619-0634
Fax: 202-205-9519

Supplemental Information

PCPID acts in an advisory capacity to the President and the Secretary of Health and Human Services, through the Administration on Developmental Disabilities, on a broad range of topics relating to programs, services, and supports for persons with intellectual disabilities. The PCPID Executive Order stipulates that the Committee shall:

  1. provide such advice concerning intellectual disabilities as the President or the Secretary of Health and Human Services may request;and
  2. provide advice to the President concerning the following for people with intellectual disabilities:
    1. expansion of educational opportunities;
    2. promotion of homeownership;
    3. assurance of workplace integration;
    4. improvement of transportation options;
    5. expansion of full access to community living; and
    6. increasing access to assistive and universally designed technologies.

Meeting Minutes

November 14, 2011 Committee Conference Call


PCPID Citizen and Ex officio Members and Representatives

James T. Brett, Chair
Annette McKenzie Anderson, Ph.D.
Peter V. Berns
Clay Boatright
Micki Edelsohn
Alison A. Hillman de Velasquez
Carl LaMell
Susana Ramirez
Deborah M. Spitalnik, Ph.D.
Lillian Sugarman
Liz Weintraub
Carol Wheeler
Mark Gross (US Department of Justice)
William D. Falsey (US Department of the Interior)
Michelle Aronowitz (US Department of Housing and Urban Development)
Yvette Rivera (US Department of Transportation)
Jennifer Sheehy (US Department of Education)
Margaret Schaefer (US Department of Homeland Security)
Jewel Bazilio-Bellegarde (Corporation for National and Community Services)
Robert Weathers (US Social Security Administration)
Mary Kay Mauren (Equal Employment Opportunity Commission)
Gary Blumenthal (National Council on Disability)

Special Guests

Julie Ann Petty


Sharon Lewis, Designated Federal Official
Laverdia Taylor Roach
Madjid “MJ” Karimi
Pamela O’Brien
Sheila Whittaker
Genevieve Swift

Summary of Proceedings

Greetings and Call to Order

Sharon Lewis, ADD Commissioner, PCPID Designated Federal Official (DFO)

Sharon Lewis greeted participants and welcomed Julie Ann Petty, future PCPID member and special guest for this conference call.

Genevieve Swift, PCPID Executive Administrative Assistant, conducted the Committee Member roll call.

Sharon Lewis stated that the goal of the conference call was to go through the report, based on the “critical” and “substantive” review comments from the matrix that Committee members received at the end of last week.

Opening Remarks

James Brett, Chair

Chairman Brett welcomed members and expressed his appreciation for the good turnout. He thanked members for their efforts to prepare the report. Many of the comments submitted by the members on the “PCPID Comments Matrix” were related to administrative issues. He suggested that a motion be made to have staff take care of all the administrative comments, rather than spending time on those issues during the conference call. Commissioner Lewis clarified that the report will pass through the Department of Health and Human Services (HHS) clearance process and will be reviewed at multiple staff levels for grammar, punctuation, and factual errors. If anything substantive needs to be changed, the HHS reviewers will return the draft to the Committee. If the Committee chooses to vote the draft forward, there will be time to correct non-substantive errors. Sharon Lewis suggested that any errors the Committee has already discovered should be sent on to MJ Karimi, the PCPID Program Specialist. Dr. Deborah Spitalnik made the motion for the Committee to have staff address the administrative details and to forward any further suggestions to staff. Carl LaMell seconded the motion. The motion was unanimously accepted.

The Committee will go through the draft report item-by-item, limiting each item to five minutes, and vote on items where a resolution cannot be reached. Chairman Brett asked PCPID DFO, Sharon Lewis, to begin the discussion.

Discussion of Substantive and Critical Issues Related to the Draft Report to the President

Sharon Lewis

All Committee members were sent a “Comments Matrix” to make administrative, substantive, and critical changes to the report at the end of last week. Several of the comments were mislabeled. PCPID DFO will go through the final matrix, comment-by-comment, so the members get the opportunity to address each item.

Discussion of Comments from Dr. Annette McKenzie Anderson

Dr. McKenzie Anderson’s comments about the format of the President’s address and the title for Chairman Brett were determined to be administrative issues.

The suggestion to change the second “underemployed” to “unemployed” has already been addressed.

In the Employment section of the report, on page 3, the month and year will be added to the sentence talking about the clarifications issued by the Centers for Medicare and Medicaid Services (CMS): “One of the brightest spots on the horizon is a series of clarifications issued in September of 2011 by the Centers for Medicare and Medicaid Services (CMS) …”

The following suggestion, in the Employment Section, was determined to be administrative: “Change to: ‘The PCPID recognizes …’”

The year of The Arc FIND survey was already included in the updated draft.

The suggestion to “Include: ‘Disabilities Education Act’” was determined to be administrative. In the updated draft, the word “improvement” was included and needs to be removed.

Earned titles, academic prefixes or suffixes will be added in accordance with the protocols established by HHS.

The term “related supports” has already been replaced with “related services” in the most recent copy of the draft Report to the President.

Discussion of Clay Boatright’s Comments will be put on hold until Peter Berns joins the call because Mr. Berns expressed an interest in discussing those proposed changes.

Discussion of Comments from Micki Edelsohn

Micki Edelsohn’s first comment involved the addition of “be it a group home or individual or shared apartment with support staff” after “supported living supports” in the Long-Term Services and Supports section of the report. Committee members discussed this comment, focusing on diversity of options versus the desire that some individuals with intellectual disabilities have to live outside of a group setting. Gary Blumenthal suggested that the Committee needs to be aligned with the position that the Administration on Developmental Disabilities (ADD) and HHS have taken on this issue. Less specific language might be a good way to accomplish this goal. Committee members decided to adopt the wording suggested by Mark Gross: “personal care assistance, respite services, employment supports, and a variety of supported living services.” Several Committee members expressed a desire to discuss this point further in the future.

A simple sentence will be added to the Letter and the Introduction sections, addressing the idea that many individuals with disabilities are engaged citizens who vote. Chairman Brett will craft a sentence for the em>Letter section, and Dr. Spitalnik will craft a sentence for the second paragraph of the Introduction. The intent is to represent that people with intellectual disabilities are important citizens who engage in voting, and that voting is a basic civil right that people with intellectual disabilities are afforded.

Peter Berns joined the call.

Discussion of Comments from Clay Boatright

Clay Boatright suggested that the following sentence be deleted: “In addition, the Medicaid program must not be converted to block grants which would most certainly have the effect of reducing available services and increasing health care disparities and out of pocket costs.” Mr. Boatright believes the sentence is a non sequitur. The document outlines the importance of various programs and services to people with intellectual disabilities. This report is more strategic in nature and does not seem like the right context to bring in such a tactical issue. Additionally, there is a great deal of politicization around the concept of block grants, which may not benefit the reception of the report.

Peter Berns replied that block grants are on the table, and the disability community has been fairly united in considering the idea of block grants as negative for the disability community. The direction would create financial incentives for states to cut spending for services to people with intellectual disabilities. The issue is not a tactical one, but rather a major structural change in the Medicaid system. No analysis has indicated that this change would be good for people with intellectual disabilities. James Brett stated that he is very comfortable having the language remain the same. Deborah Spitalnik expressed her opinion that the Committee can address this issue because it is not a political statement, but rather a statement about the structure of Medicaid. The fact that this has become politicized does not diminish the importance of the Committee speaking out about it.

Clay Boatright suggested that this sentence be reworded to address what block grants “must not do” if they are implemented (implementation will likely take place). Deborah Spitalnik asked Clay Boatright to explain his concern. Ample evidence exists, from programs converted to block grants, that individuals with disabilities suffer as a result of the change. Clay Boatright explained that his concern was largely political. He was happy to have the Committee leave this sentence in the draft, but he was much more concerned about the other sentence that Peter Berns identified. The Committee decided to leave the sentence under discussion in the report.

Mr. Boatright’s second suggestion, which Mr. Berns wanted to discuss, is as follows: “Supporting full implementation of the Affordable Care Act (ACA), including all the provisions relating to planning, programming and monitoring, should be an important part of any deficit reduction strategy.” Peter Berns suggested that PCPID should speak in favor of the ACA because it is widely seen in the disability community as the single most important piece of legislation affecting people with intellectual and developmental disabilities since the enactment of the ADA. The ACA needs to remain intact in its entirety because it is constructed in such a way that it will fall apart if any of the components are removed.

Clay Boatright emphasized the political sensitivities surrounding the ACA. Supporting full implementation of the ACA, including aspects that may not relate to individuals with disabilities, may offend the portion of the report’s potential readers who do not favor the ACA. This may cause those individuals to disregard the report as a whole and view the entire document as more politicized than the Committee intends. Several Committee members recommended removing the sentence entirely. Peter Berns insisted that specific portions of the ACA, which related to people with intellectual disabilities, should still be mentioned. The Committee decided to replace the current sentence with one that delineates specific benefits that the ACA affords to individuals with intellectual disabilities. There are a number of provisions under the ACA that improve opportunities for quality healthcare for people with intellectual disabilities, including the elimination of preexisting conditions, the opportunity for youth to stay on their parent’s insurance, and the elimination of annual and lifetime caps.

In the em>Healthcare section of the PCPID 2011 Report to the President, under Mr. Berns’ sentence, Dr. Spitalnik suggested referencing the fact that ACA also affects acute care healthcare and long-term supports, which are essential to health and well-being. She volunteered to review the sentences once they are written.

Discussion of Comments from Carol Wheeler

Carol Wheeler’s first comment had to do with sentence structure and is administrative in nature. The word “disregards” may be confusing to some readers. The language will be modified in the following way to make it more understandable: “The Supplemental Security Income (SSI) program $20 general income exclusion and the $65 earned income exclusion have not changed since the program was implemented in 1974.”

A different testimony will be used in the Income Support section, or the Committee will go back to the Wang family (testimonial section) and gather more information about the particular support that they receive, especially SSI benefits.

On page 11 of the Long-Term Services and Supports section, the last sentence of the first paragraph will be modified to read as follows: “Unfortunately, too many adults with intellectually disability continue to live in state institutions, nursing homes, and similar congregate facilities.”

Discussion of Comments from the U.S. Department of Education

The first suggestion from the U.S. Department of Education (DoED) has already been addressed. Committee members will check the document to make sure there is no reference to the Individuals with Disabilities Education Act (IDEA).

The second comment from DoEd was moved to the administrative category. Additionally, HHS staff will check the facts stated in the report. DoED provided data for the writing of the report and is willing to provide any further data that is needed.

Discussion of Additional Comments (Not on the Comments Matrix)

Micki Edelsohn requested that, for clarification, the phrase “married in 2001” be added before the first sentence in the testimonial under Employment section.

Under the testimonial for the Education section, the age will be added for Oliver Dynes, in the same format as the other testimonials. The name of Oliver Dynes’ mother, “Jane Luke,” will be removed from the testimonial because he signed off on the use of the story himself.

PCPID needs permission to use all testimonials. PCPID staff will follow-up to make sure that permission is received for each testimonial.

Gary Blumenthal asked whether the report should make a reference to preserving, not repealing the Community Living Assistance Services and Supports (CLASS) Act. Clay Boatright suggested that the members not bring this issue in. This is a volatile issue and would take significant time to debate. Liz Weintraub stated that the CLASS Act is important to people with disabilities, but she agrees with Clay that the Committee does not have time to discuss it at present. The issue will be addressed later.

Michelle Aronowitz commented that em>Olmstead Decision is mentioned in the introduction as federal policy, but is a court decision. This issue will be fixed at the staff level. Additionally, she suggested revising the first sentence in the fourth paragraph of the introduction. The current sentence makes it sound like the only important issues are the ones mentioned. Sharon Lewis suggested the following language: “In the current context of the deficit reduction debate, PCPID has identified issues of particular importance to people with intellectual disabilities…”

Final Comments and Role Call

James Brett, Chair

James Brett called for a motion to approve the minutes of the last PCPID Meeting in September 26–27, 2011. The motion was made by Carl LaMell. Liz Weintraub seconded the motion. The minutes were unanimously adopted.

James Brett called for a motion to have a roll call vote for the report to move forward as currently drafted, with the technical and administrative corrections as identified by members and staff. Liz Weintraub made the motion. Micki Edelsohn seconded the motion.

A roll call vote was conducted, resulting in the following votes: 12 approval, 0 non-approval, 10 abstention, and 6 votes not received.

Sharon Lewis and Laverdia Roach discussed the question of whether a simple majority would suffice to approve the report as long as a quorum participated in the meeting. They will discuss the issue further after the conference call and determine who needs to contact the HHS Office of General Counsel at that time.

Liz Weintraub made a motion to conclude the meeting. The motion was seconded by Susana Ramirez. The motion was unanimously accepted.

Chairman Brett adjourned the meeting.

Action Items

Committee Members

  1. Chairman Brett will craft a sentence for the Letter section, and Dr. Spitalnik will craft a sentence for the second paragraph of the Introduction, addressing the idea that many individuals with disabilities are engaged citizens who vote. The intent is to represent that people with intellectual disabilities are important citizens who engage in voting, and that voting is a basic civil right that people with intellectual disabilities are afforded.
  2. Chariman Brett will craft a sentence about how people with disabilities are citizens and voters.
  3. Once the sentences regarding the benefits of the ACA have been written (currently on page 22 of the report, in the Healthcare section), Dr. Spitalnik will review the language.
  4. Committee members will check the document to make sure there is no reference to IDEA.


  1. Staff will address all administrative and grammatical comments to the draft report.
  2. Sharon Lewis and Laverdia Roach will determine whether a simple majority would suffice to approve the report as long as a quorum participated in the meeting. One of them will contact the HHS Office of General Counsel.
  3. PCPID staff will follow up to make sure that permission is received for each testimonial.

Last modified on 03/08/2017

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