Steering Committee Meeting Minutes Thursday, December 19, 2013
Group C: Community Supports
Matt Janicki Attending
Larry Force Absent
Nancy Jokinen Regret
Phil McCallion Attending
Group S: Screening
Lucy Esralew Regret
Lin Nelson Absent
Melissa DiSipio Absent
Group H: Health Care
Ron Lucchino Absent
Baldev Singh Absent
Kathy Service Attending
Attending
Kathie Bishop Attending
Seth Keller Attending
Dawna Mughal Attending
Nabih Ramadan Absent
Mike Rafii Absent
Group T: Training
Kathryn Pears Attending
Kathie Bishop Attending
Advocacy
Mary Hogan Absent
Leone Murphy Attending
Kathy Srsic-Stoehr Absent
Sara Weir Absent
1. Group T update -
Kathie and Kathryn - Group levels I (has a drop box available with a lot of info) and III (clinical component) have been working a lot. They are also doing a brief introduction on the importance of environment on behavior for Arc/US. Kathie met with Mary Hogan and discussed a list of topics which should be under Level V (the family caregiving piece). Mary has a list of caregivers who can review content for Level 5. Matt, Kathryn, Seth and Kathie met two weeks ago to discuss how this all impacts the annual meeting. Kathie hopes to have parts of Levels I, III and V available for the general meeting. Dawna has a graphic designer working on this to consistently “brand” the module. Kathie suggested calling the whole module “My Thinker’s Not Working: A Training Manual on IDD and Dementia.” Mid-January is the goal for a draft to send to the group. A general status summary will be sent to John for distribution. Matt suggested a general summary to the NTG including Group T.
2. 2014 annual meeting update
This meeting is being done in co-operation with AADMD and Special Olympics. June 16, 17 and 18.
June 16 AM – A Health Symposia will be hosted by Special Olympics. The PM session will probably be a Group T presentation.
June 17 and 18 - The morning sessions will be plenary sessions involving all three groups (NAIDD, NTG, Special Olympics) with the afternoon sessions devoted to Self- advocacy and Family Advocacy and their needs and the problems they have. Matt discussed the panel concept. Leone gave a brief biography of her daughter Michele (who is 40 with Down syndrome) and why Michelle could contribute to a leadership panel (having just lost 2 close friends to Alzheimer’s and witnessed their decline and passing.) The leadership panel could include Maria Shriver as moderator with Sharon Lewis (ACL), Aaron Bishop (AIDD), Harry Johns (Alzheimer’s Association), Peter Berns (Arc/US), Jon Colman (NDSS), Laurel Coleman (NAPA Council).
Seth, Kathy Srsic-Stoehr, Leone Murphy, Mary Hogan, Elizabeth Bodine and Matt will have a teleconference to develop points to cover on the panel.
The budget for the annual meeting is being worked out along with registration fees. $155 is the fee for Hyatt Regency per night.
There will be a reception on Monday night.
Matt noted there are many logistics that need to be worked out including soliciting and vetting submissions, chairing sessions and tracks, moderators.
3. NAPA meeting
Matt reported on the December 2, 2013 meeting. They have replaced some members and reappointed others including IDD advocates.
February 3, 2014 is HHDS Building in Washington. Mary Hogan is hoping to attend the meeting. Matt hopes Tom Buckley will attend to discuss community care. This meeting is key for us to make plans for the next year and to publicize what we are doing. There is money to assist NTG members to attend.
4. Group updates
Group S expects more discussions after the holidays.
Group H - Kathy Bishop is reviewing the editing done by Matt and Dawna. It will be submitted to the Journal of AAIDD. The biomarkers project Mike Rafii is involved in is looking at screening younger individuals. Brain scans, blood tests, etc., will comprise the biomarkers. Mike Rafii has agreed to present at the annual meeting. Matt and Seth discussed the need for NTG to develop plans for NTG participation in the biomarkers program and the need to standardize screening and testing tools so various groups can collaborate. Seth spoke of IDD & Neurology special interest group which will be attending the American Academy of Neurology conference May 3 at which Mike and Seth will be presenting.
Group C - Phil McCallion noted they continue to talk with Sandy Stamp and her group. Discussions are ongoing.
Group A – No comments at this time.
5. Mass Mutual Insurance Company wants to have presentations/workshops around the US relating to age (core issues.) The grant money may be a fair amount (between $10,000 and $50,000). The money could be used to develop the curriculum and product development.
6. NASDDDS/HSRI update – Matt & Seth spoke with Chas Mosley and others. Matt’s feeling is they are funding physical disability rather than developmental. Phil noted the obstacles in making any changes in how data is collected by NASDDDS resulting in zero value for us.
7. MOU, AADMD/NTG – The MOU needs to be dusted off and needs to be signed.
8. Memory Matters Info Blast - We have to be concerned about copyright implications. Graduate students may be able to assist with vetting the information. Seth asked the group if anybody wants to take control of this project.
9. National Quality Forum has been asked by NAPA to look at Alzheimer's disease. Matt will represent the NTG on this group.
10. If anyone has ideas for changes or updating the NTG website, please get the comments to Matt.
11. Next meeting January 23, 2014 at 8 PM EST.
Respectfully submitted,
Leone Murphy