PCPID Quarterly Meeting: November 19–20, 2008

Final Discussion of Pre-printed PCPID 2009 Report to the President

PCPID Ex Officio Representatives and Citizen Members

Mr. Tienken pointed out that they had all of the Secretaries as ex officio. He wondered if they were going to put in any of the representatives, thank you notes, or acknowledgment in the Report since the version he received just had the ex officio representatives. Ms. Roach informed him that the representatives have never been included in the past. Mr. Tienken wondered if they should include a special thank you in the Report. Ms. Roach thought they might be able to begin the acknowledgment section by recognizing the service of ex officio representatives.

Ms. Roach will send the names of the representatives to Dr. Mank for inclusion.

These names will be put in as they are featured on the roster: “Ex Officio Member represented by.” Dr. Mank will set it up stylistically however he would like.

Chairman Rhatigan thanked Dr. Mank for his contributions. Dr. Mank requested that everyone have their information to him in a timely manner, and Chairman Rhatigan assured him that they would.

Official “Declaration of Understanding” to Approve PCPID 2009 Report to the President

PCPID Ex Officio and Citizen Members

Chairman Rhatigan took a few minutes to discuss the unique situation the Committee was in with a new administration. They ought to be presumptuous and prepare this Report to go to the new Administration as well. This would mean new transmittal letters as of January 21st. The Chairman assumed the responsibility for writing the new letters. The style would need to be changed and then transmitted from the new Secretary of Health and Human Services. This topic is important to others besides the members of the Committee.

Mr. Eric Cole explained that, in the Public Awareness Focus Group, members discussed sending a letter to the Secretary and on to the President as a final push to have previous Reports released. They would specifically inquire about the 2000 Report on dental care, the 2007 Report on asset development, and the 2008 Report on FAS and FASD in addition to this current Report. He felt that it would be appropriate to mention the time and cost invested to produce these reports. This letter would be in addition to the letter transmitting the Report.

Mr. Cantos felt that they work really needs to be done to get these Reports released under this Administration by emphasizing that this is literally the last chance. They need to respectfully and strongly ask the President or the White House to allow them to publish these Reports. At least $2.4 million in time, staff, resources, and other assets has been invested in these reports.

If they are still unable to get the Reports published, they may be able to release the documents as findings of the Committee or something in that vein. This can be done under the charter which allows them to release other documents as they deem it necessary. Ideally, however, they would want to do it under the seal of the President as it has been done in the past. If they cannot get it published as it has been before, they should still release it under this Administration by January 20th so that it is on record that this Administration made recommendations. President Obama can look through the work that has been released and move forward with suggestion.

Chairman Rhatigan approved of the effort to get the Reports published. He will work with Sally, Laverdia, and Ollie to write the appropriate letter. However, he was not sure about the alternative plan which Mr. Cantos proposed.

Mr. Tienken questioned whether they should discuss the New Freedom Initiative if they wanted the Report to go to the new Administration. He thought that mentioning the New Freedom Initiative would neutralize any political interpretation of this Report for the new Administration. Chairman Rhatigan will work with Ms. Roach, Sally, and Ollie to come up with a letter that would transmit it properly. Ms. Roach asked that Will email her the basics of how it should be worded and set up.

Chairman Rhatigan and Mr. Balkus discussed the CMS issue and whether it was clarified. Mr. Balkus was not quite sure how Social Security would fit into that recommendation.

Ms. Roach asked if Mr. Balkus would find it helpful to do some bullets indicating how he thought the rewording ought to be. However, he stated his preference that someone from HHS and CMS pick up on that. Chairman Rhatigan felt it clarified the situation when informed that it refers to 1915 and not just broadly.

Information Sharing

Committee Members, Constituency Group Representatives and Citizen Members

Chairman Rhatigan invited members to talk about Information Sharing.

Mr. Eric Cole informed the group about some of the things that have been going on in the Public Awareness arena. He thanked the staff of the Committee which has been working on getting past publications in an electronic format that can be posted on the website. He also thanked Mr. Cantos.

Ms. Starnes brought up a discussion about remaining in contact via friends of the PCPID. She talked about Fred Krause, former PCPID Executive Director, providing that kind of activity, but she has not tapped into that yet. She asked Laverdia to shed some light on the kinds of things that are done through his volunteer service.

Ms. Roach explained the background of Fred Krause. He is a former director of the President’s Committee on Mental Retardation (PCMR) who established the Friends of PCMR Group. Ms. Roach will contact him to learn about the status of the group and their recent activities. The group is very supportive of the PCPID in a non-financial way. In order to carry out projects, they depended on co-sponsorships, usually from sister agencies. The PCPID is not allowed to raise money and they cannot accept money because they do not have gift authority.

Ms. Starnes said that she would be interested in receiving information from Laverdia. She would like to see the new National Council on Disability (NCD) Reports or anything like that which might be missed.

Ms. Starnes also reminded the group that the Annual Access Ministry Summit at McLean Bible Church, the large national conference on faith and disability, will be held on March 20th and 21st. She and Mr. Sharman Dennis will both be speaking. Lewis Solomon, the pastor of the church, was a former Member of the PCPID. These are the types of things that she would like to be informed about, if that no longer happens through the Friends of PCMR.

Mr. Hollingshead suggested that Eric Cole could setup a simple association using a tool like Linked In. Then, people can ask to be invited to the group. Mr. Cole or Ms. Roach could be the administrator. The group will pop up when people search intellectual disabilities. There could be discussions between group members. They could expand the network from current the Administration to earlier administrations, parents, and others.

Mr. Cole inquired whether Linked In was the best platform to use. Ms. Zeppuhar thought that a link on DisabilityInfo.gov might also be helpful. It might make things easier for parents.

Chairman Rhatigan expressed certainty that the group would think of a way for members to keep up with one another.

Mr. Cole said that he would work with the staff on that project. If anyone has questions, they can e-mail him.

Ms. Atwater reviewed a few housekeeping items for the next day. The Awards Ceremony given to recipients in memory of Dr. George Bouthilet was the following day. The ceremony would be starting at 8:30 a.m. Individuals were asked to report to the same room as the present meeting around that time. At about 9:30 a.m., they will leave for the Newseum. They will be there for a few hours. Those on the phone may call in from 8:30 a.m. to 9:30 a.m. if they wish to participate. However, participation in the ceremony is not mandatory.

Ms. Atwater took a minute to recognized the staff of the PCPID and thank Ms. Kodie Ruzicka who would be leaving the staff shortly.

Chairman Rhatigan called for any final comments. When no one responded affirmatively, he thanked Ms. Sally Atwater for her work with the committee. She served for seven and a half years.

With that, Chairman Rhatigan recessed the PCPID quarterly meeting and stated that it would reconvene on November 20, 2008, at the Herbert H. Humphrey Building, Room 705A, at 8:30 a.m.