Steering Committee Meeting Minutes Tuesday, October 18, 2011
Group C: Community Supports
Matt Janicki Attending
Larry Force Attending
Nancy Jokinen Attending
Phil McCallion Absent
Group S: Screening
James Acquilano Absent
Lucy Esralew Attending
Lin Nelson Absent
Melissa DiSipio Attending
Group H: Health Care
Ron Lucchino Regret
Baldev Singh Attending
Kathy Service Regret
Julie Moran Attending
Kathie Bishop Attending
Seth Keller Attending
Dawna Mughal Attending
Advocacy
Mary Hogan Attending
Leone Murphy (Secretary) Attending
Meeting, Tuesday, October 18, 2011 at 8:00 PM Eastern Daylight Time.
The meeting was called to order at 8:08 pm.
1) Thinker Document update – The Document should be available for access tomorrow. It hasn’t changed but some information has been added. They would appreciate feedback especially on recommendations. The substance is still the same.
The Thinker Document will be shared with all those attending November 8, 2011. We hope to get feedback from key participants and then update it. Hopefully, then we can go to press. Matt hopes to release in final form in January, 2012.
Currently, Janicki, Keller, Bishop, Jokinen, Esralew, Hogan, Ramadon, DiSipio, Syrisc, Staley (Kathleen) are planning to attend. Larry Force is planning to attend as well from NTG Membership.
2) Group S update – Lucy is using Thinker Document at the November 3rd presentation at NADD’s Annual Conference. She is scheduled to present in Nashville regarding NTG. She will send some slides for all to review (by next week).
NADD Bulletin – Lucy will be co-editor starting January, 2012. She invited members to submit information regarding the NTG. Matt offered several suggestions, including information on the website.
Group S met last month via webinar. The Group wants to meet on a regular basis either every month or every other month to share information and keep the momentum going. They are at a point where they need to develop instructions to administer the DSQUID and for scoring the results.
Seth asked “How do all the variations affect the final outcome or understanding of screening tools?” Lucy notes the variations are items for discussion. The Deb version is the only one that has a scoring mechanism. DSQIID is really for diagnosis whereas the DST version is for caregivers to give information to physicians and professionals when they have concerns. Lucy noted we need to get a handle on severity and functional decline.
Mary Hogan clarified that the “Dementia Screening Tool” (notes changes – new symptoms or worsening symptoms) should not be confused with the DSQIID (diagnostic tool). Melissa will send out a corrected version.
3) Group H update –Kathie Bishop commented on her “Position Paper”. From here the Group wants to take this and put it up for a journal article. It does need to be re-written and peer-reviewed. It will be reformatted into a journal style format. Also, each member will be submitting outcomes (for Group H) they would like to see happen. Julie has also said one of hers is to have a peer-reviewed article. Seth said the group needs specific goals and next steps so we can move to the next level (training and workshops).
Julie Moran is currently on maternity leave. Julie had her baby girl, both doing well. She also has a position paper and is a key participant in Group H. Julie’s position paper is from the physician’s perspective. Kathie’s perspective is from the family, caregiver, perspective. The two papers may overlap in some areas.
Mary said National Down Syndrome Association is making an effort on publishing materials on aging.
4) Group C update – Nancy said John is helping set up a Wiki Page. They want people to use the site to participate and confirm “best practice” information.
Larry said he has been experiencing this on a personal level with a family member who has dementia. He asked if others are having issues getting feedback from other members in their groups. Nancy notes 4 active out of 30, Lucy notes 8 active out of 20. Several members offered suggestions on getting improved communication. Matt said we need to personalize the email communication and ask the person to respond to a specific area. Larry said some form of recognition and acknowledgement needs to be made. Perhaps this could be discussed further on November 8th as part of strategic planning.
Nancy shared an example of a case in the DC area where the person with Down Syndrome is sitting in acute care because he has dementia and there is no appropriate placement. Mary said that asking for feedback for an entire document is overwhelming. Nancy said they would try using sections and bullet points.
5) Nov meeting update/NAPA – We have gotten a significant number of replies of intent to attend (nine organizations). The morning will be a dialog portion and see what suggestions they may have and to what they might commit.
The afternoon will give the work groups time to discuss their issues.
Matt reviewed those who will be attending from the national organizations. Mike Splaine was having a meeting today with Helen Lamont to get updated scoop on NAPA and on who we should invite that could attend.
The next NAPA meeting is January 17, 2012 and NAPA is under pressure to have a document ready to satisfy legal requirements.
6) 2012 plans – There are two national meetings:
a. AAMDD – May 17-20, 2012, Mesa AZ
b. AAIDD – June 18-21, 2012, Charlotte, NC – Melissa will send out an email.
NTG could organize presentations to share information and do trainings.
Seth spoke of the AADMD Conference. The Arizona DD Council (Larry Clauson) is very excited about NTG being part of the Conference and may offer support (financial and admin). Plans and exact day for the workshop, screening, care issues will be topics as well as best practice.
Matt spoke of having 3-4 NTG members do the presentations at each conference across all of our groups (C, S and H).
Melissa spoke of AAIDD Annual Meeting. She is on the planning committee. Deadline for submitting a proposal to do a workshop is December 2, 2011. Seth asked Melissa how she sees financial support for workshops. She suggested Seth speak with Maggie Nygren.
AAIC (Alzheimer's Association International Conference) 2012 will held in Vancouver, British Columbia, Canada, July 14-19, 2012.
YAI – Matt and Larry will be presenting at YAI in New York
IASSID World Congress, July 9 - 14, 2012 Halifax, Nova Scotia
7) Schedule next meeting – to be scheduled after the November 8, 2011 meeting.
Meeting adjourned at 9:45 pm.
Respectfully submitted,
Leone Murphy