PCPID Quarterly Meeting: November 19–20, 2008

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)