Steering Committee Meeting Minutes Thursday, January 23, 2014

Steering Committee Meeting Minutes Thursday, January 23, 2014

Group C: Community Supports

Matt Janicki ttending

Larry Force bsent

Nancy Jokinen Attending

Phil McCallion Absent

Group S: Screening

Lucy Esralew Attending

Lin Nelson bsent

Melissa ttending

Group H: Health Care

Ron Lucchino Regret

Baldev Singh Attending

Kathy Service egret

gret

Kathie ttending

Seth Attending

Dawna ttending

Nabih bsent

Mike bsent

Group T: Training

Kathryn ttending

Kathie ttending

Group A: Advocacy

Mary Absent

Leone Attending

Kathy bsent

Sara Absent

Agenda

1)2014 AADMD Meeting Update–The Save the Date Info Blast went out today which includes very basic information – dates, location and hotel. Registration starts February 1, 2014. Hotel room rates are included. Additional detail and conference content will be out shortly.

Family and Advocacy Panel expected to be on Tuesday. We expect Monday morning to be Special Olympics holding a Health Curriculum and CareWorkshop.

Tuesday after the Family Panel, the Leaders Panel will take place and will include Sharon Lewis, ACL,and Donna Meltzer, Executive Director of the National DD Council. Senior leaders from Arc of NJ, NDSS, Alzheimer's Association, NAPA AC, AAIDD, all of whom will discuss what their groups can deliver after hearing form the Family and Advocacy Panel. We are close to having Maria Shriver locked in. If she can not attend, probably Tim Shriver is expected to fill in.

Three tracks on Wednesday. The NTG will be reviewing the papers that are submitted.

John McKinley who played Dr. Cox on Scrubs has a son with Down syndrome. John has become a spokesman for the Respect Campaign.

Seth discussed the uses of a $5000 grant from DD Council and what can we use it for. Lucy suggested we look at what we asked for and what stipulations were attached.

Matt discussed funds recently allocated for Alzheimer’s Caregivers on the federal level and why we need to think about this strategically. Seth suggested he and Matt get on the phone with Sharon. Matt will be in Washington Tuesday and will see if he can round up some individuals to discuss.

2)Curriculum update - Kathie said they are making significant progress with the templates. Some of the sessions and a beginning package for Levels one and three will be in draft form in a few weeks. Meetingswill be held with co-chairs every few weeks. February 27, 2014 at 8 PM is the next meeting date. They will meet every three weeks. This will allow for sharing of progress in each level by chairs and facilitate faster progress. There also may be some trading off of materials that may end up being more appropriate for another level. By the end of day they will be ready to plan for the conference in June. They are looking at having regional training teams consisting of NTG members with sessions running around three days.

Kathie said they have discussed possible funding opportunities throughMassMutual to obtain funding for honorariums, distribution, etc. More contact and discussion will be conducted by Matt Holder with MassMutual.

Kathie said they had a very productive meeting (Kathryn, Kathie and Ron Lucchino) with Amy of Hospice of America. It was very productive and they are meeting again in February. They are looking at Level 3 and End of Life as well as co-sponsored webinars.

They are working on a marketing presentation.

Kathie noted Helen Stefanway at Pathfinders has offered to have a regional meeting May 15th. Kathie is meeting with her Monday. Kathie does not have attendee list. Nancy and Kathie discussed that it is important to develop regional groups to maintain the excitement.

UNBC - Nancy spoke about NTG and continuing studies. Troy Lee is our contact. They seem to be motivated to do training with the curriculum. UNBC certify it and market it.

3)CARF - Matt sent around drafts (from CARF) for comments. However, they were not drafts but finalized standards. The standard should be out by June. Seth asked what part isTom Buckley going to play?

4)NAPA – Matt is presenting next Tuesday, February 3, 2014. Of note is there will be a special workgroup on severe dementia. Tom Buckley is coming from Florida to present what they are doing at Nova University. Nova has the only dementia assessment facility in the state of Florida (they are located in Hollywood, FL). Seth noted to Matt that if Harry Johns is there, mention the invitation to our meeting.

5)Leaders update – Seth discussed the letter from James Thompson, President of AAIDD and suggested we should make sure NTG has a good relationship with AAIDD. Matt suggested Seth contact Jim to suggest dementia is on the agenda for the conference in June 2014 in Orlando, FL. (Maggie Nygren is a paid executive and the president has a one-year term.)

6)Group A, S, C, H, P, Q, U, and Z updates

Group S Melissa updated the progress they have made. John Hood provided Melissa with the membership list to send the letter that she is drafting regarding who are using the EDSD, or who wants to use the manual, and to get feedback and data generation.

Group S is submitting their panel piece from the AAIDD conference for the GSA Conference.

Group C – Nancy noted the webinar showcase for a month (March) for the guidelines.

Kathie Bishop notes her article is coming soon. She is on page 16 of 17. She hopes to finish this edit soon which is closer to a final edit for submission.

7)Update to members - Matt is working on an info blast to the members.

8)AADMD MOU update- Seth and Matt are ready to sign

9)Additional detail – Seth, Matt, Kathie and Dawna discussed the logo. Matt noted he, Lucy and Rick Rader have scheduled an NTG workshop in Nashville, TN, for 2/7/2014.Matt sent a note to John to put this and other updates to the website.

10)February Meeting, Tuesday, February 25, 2014, 8 PM EST.

Respectfully submitted,

Leone Murphy