NTG Steering Committee Meeting Minutes April 30, 2011

NTG Steering Committee Meeting Minutes April 30, 2011

Group C: Community Supports

Matt Janicki Attending

Larry Force Regret

Nancy Jokinen Attending

Phil McCallion Regret

Group S: Screening

James Acquilano Attending

Lucy Esralew Regret

Diana Burt Attending

Lin Nelson Regret

Barbara Caparulo Regret

Group H: Health Care

Ron Lucchino Attending

Baldev Singh Regret

Julie Moran Attending

Kathie Bishop Regret

Seth Keller Attending

Advocacy

Mary Hogan Regret

Leone Murphy (Secretary) Attending

1. Introductions

2. Matt and Seth shared information regarding their two days in Washington DC. They met with more people than expected.

a. They met with Maggie Nygren & worked out logistics for the June 6th meeting. The meeting Schedule, Agenda and Framework were sent this morning by email. They have the room & food arrangements along with support worked out. AAIDD has been extraordinarily helpful.

b. They met with Stephen B. Corbin, D.D.S., M.P.H., of Special Olympics..Dr. Corbin serves as the Senior Vice President of Constituent Services and Support and Dean of Special Olympics University. Dr Corbin was instrumental in providing names of contacts in Washington DC as well as discussing a possible future screening tool for aging athletes.

c. National Down Syndrome meeting with Madeleine Will, Director, National Policy Center, was very productive. We learned about some possible family issues which will be shared with the Group in a written communication. Madeleine strongly suggested country-wide training to orient families on this issue.

d. Alzheimer Association meeting was also exceptionally productive. They met with Matthew Baumgart, Senior Director of Government Affairs at the Alzheimer’s Association. The Association is very supportive and plans to include NTG materials and events into their structure as they develop their support for the National Alzheimer's Project Act (NAPA). They gave us information regarding the status of the Act. The Whitehouse met with key people from DHHS and assigned that task to the Assistant Secretary of Planning and Evaluation so it will be an interagency effort. The Alzheimer Association is totally supportive of what we are doing.

e. National Association of State Directors of Developmental Disabilities Services (NASDDDS) meeting with Nancy Thaler & Charles Mosley was very helpful & supportive. They are keen to see what we produce and integrate so they can get that information out to the states. Both the Alzheimer Association & the NASDDDS will disseminate a lot of our information. Matt notes he was overwhelmed with the support he and Seth received.

f. They also met with Bob Hornyak the Acting Director of the Center for Policy, Planning and Evaluation within the U.S. Administration on Aging (AOA) They offered to circulate information on the NTG through the aging network as well as to provide additional contact information of other organizations and leaders who may help with the project.

g. The most productive part of the trip was meeting with Sharon Lewis, Commissioner, Administration on Developmental Disabilities (ADD). The goal of the meeting was to insure Intellectual Disabilities are on the table when the NAPA was constructed and deliberated. She has been appointed to the committee at DHHS that is going to design NAPA for DHHS. She is committed to our concerns and will contact us for info and support.

h. George Jesien, AUCD (Association of University Centers on Disabilities) was very supportive and is interested in the potential for training & education as a follow up for what we develop.

i. Matt will send a note shortly to summarize the above comments.

j. Seth notes the issue is “how do we take all this “good will, people and information” and translate it into action nationally?”

k. Matt said the organizations contacted on this trip noted other organizations we should contact/include and Seth has commenced that task. Seth noted networking is a great method to “grow” the Project.

3. Group C: Community Supports – Nancy is still working on a revision of their document. Nancy and Mary had a lengthy discussion while others have given items to be incorporated into document. We have uploaded a pamphlet from Karen Watchman (out of the UK) onto the Group site regarding adapting the home environment. Matt thinks this is moving along nicely. There is a Group C update by Larry Force on Google Doc.

4. Group H: Health Care – Seth notes the Group has several documents on Google Docs which seems to be getting little attention. Individuals need to add to these documents. Kathie Bishop wrote in relation to communication between the care advocacy providers & the health care team. Baldev Singh has created a watch list, i.e., “10 Warning Signs for Care Providers”. There may be some overlap between the Groups so we need to take care of cohesion of effort.

Julie’s draft is underway and was put on to the desktop. Julie notes all Groups are writing the same introduction so we need to compare documents to eliminate redundancy allowing each Group to focus on unique aspects of each Group with respect to the general project. Julie is trying to remain faithful to original outline: introduction; health care access and disparity; prevalence issues; recent references; follow up to get to aging populations in general; and then syndrome specific issues. Individual leaders seem to be doing it on their own. Will all of the Group’s work be on Google docs? Seth notes Google docs go only to the specific Group members, i.e., Group H documents to Group H members, as he was trying to stay faithful to the Group ID. Julie feels some cross talk will be helpful to avoid inconsistency of data.

Matt is not worried about redundancy at this stage, as we will eventually synthesize the data and references. What is important is for each Group to work/focus on its mission. Introduction will demand consistency, i.e. we will collapse comments and format appropriately. The issue is to get the substance of each Groups’ charge down.

Diana Burt suggested email requests for data, references, etc, to avoid excess effort. She has some references that may be helpful to Julie.

Nancy noticed redundancy and therefore decided to focus on Group C only. Julie notes that she would like to see some Group editing particularly before the June Session so all can weigh in.

Ron is looking for each Group to suggest unique issues that we can use practically, i.e., focus on what is unique in their Group that is going to provide the people in the community practical skills.

Seth said to remind yourselves what the other Groups are doing. Matt felt the entire NTG should be able to view all documents on Google.doc and suggests we limit the 3 URL’s to members of the NTG.

Ron asks that each Group submit a one page bullet pointed practical skills list that the Group would like to see for use by community based people.

Nancy says her document was a skeleton but is now somewhat wordy. The points being raised by members are in the document.

Ron notes he sent a framework originally and Seth has framework and will pass along.

Julie asked if Google doc is just for the Group. Seth notes Google docs is “open” if you have the URL. Matt suggests not on the web site but rather allow leaders and Group members to view and add comments. All NTG members should have access. Seth agrees if you are in the NTG, you can see all documents. Matt suggests we give 3 URL’s to NTG members and resend the URL’s often (every 5 days) and keep the documents off the web site.

5. Group S: Screening

Seth showed some of Group S’ materials on the desktop. Diana Burt notes, regarding the Survey Document, screens were gathered from Group members. Group S members are being requested by email to rate each Screening. Group S will rate using the survey detail presented at the webinar. The data will be compiled as to the screens’ advantages, disadvantages, statistics, & validity. In addition, the Group has practical issues for comments on the Google Docs which is a list rather than text. The Group has 3 sub Groups; 1st discussing the experience that one should have to administer the screens; 2nd focusing on validity and reliability issues; & the 3rd focusing on how to reach out to people. One of the assessment weaknesses in the 90’s was lack of focus on how to reach out to all people and how to screen and assess usefully and efficiently. The Group’s document will include what the Group has done so far along with a table summarizing data and answers to the questions asked.

Seth notes this goes to training. John Hood, May 4, 2011 at 8:00 pm EST, is giving a practical GoToMeeting, GoToWebinar and overview of the usage of Google Documents. He will use Diana’s documents for examples. The email announcing the Webinar was sent out primarily to engage our silent members. Seth notes 5 people have signed up so far. Seth listed who has signed up. This training will be archived so it will be available if anyone has a conflict issue. Matt asked that notices be sent every day to increase turn out. Seth described the GoToWebinar frequency attribute. Matt noted the screening issue also came up at the Alzheimer meeting. Using “Screen” as a word raises issues and so we ought to define the parameters of screening and then articulate the Group’s recommendation. This is a political issue which needs to be accommodated. Diana notes Group S has been discussing sensitivity since inception. Screen implies “door to door” while Group S is using screen in terms of a mechanism to ascertain or validate suspicions before referral for diagnostics. Matt raises the issue only as it seems to be a concern and we need to be sensitive.

6. St. Paul

Seth showed two documents to frame out the day. Diana Burt asked if we are having any working Group time as we need time to discuss unresolved issues. We can use lunch time if we note that lunch will be “working Group” session in addition to lunch. Matt suggested accelerating the Reports to 15 minutes each giving an additional hour for break out time. Seth said the introductions by Maggie Nygren and the Overviews by Chas Mosely and Michael Splaine are terrifically important & relevant to what we are doing including integrating our efforts with the broad array of efforts by these other organizations. Matt suggests we can also add additional time by starting earlier than 9:00 am, whatever is needed. Diana suggested 7 to 8:30 working Group meeting or possibly meeting the evening before.

7. Webinar outcome

Seth reported that the Webinar April 27th had 152 people participate. 320 people registered from all around the world. Seth wanted to put poll questions about who they were and how they felt about the issues but the poll function could not be deployed. Feedback from about 40 people regarding dementia interests worked as a pilot and accomplished the mission.

8. Seth said we need to think about the National Task Group in 2012 How, When and Where we want to be involved.

9. Matt suggests we poll the Steering Committee to schedule the next meeting, probably the week before St Paul.

The meeting was adjourned at 11:02 am.

Respectfully submitted,

Leone Murphy