Steering Committee Meeting Minutes Tuesday, February 25, 2014

Steering Committee Meeting Minutes Tuesday, February 25, 2014

Group C: Community Supports

Matt Janicki Attending

Larry Force Absent

Nancy Jokinen Attending

Phil McCallion Absent

Group S: Screening

Lucy Esralew Regret

Lin Nelson Absent

Melissa DiSipio Attending

Group H: Health Care

Ron Lucchino Absent

Baldev Singh Attending

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

Group A: Advocacy

Mary Hogan Absent

Leone Murphy Attending

Kathy Srsic-Stoehr Regret

Sara Weir Absent

Agenda

1)  Group T - Kathie Bishop – The working committee meeting will be held in Philadelphia PA on April 30, 2014 and May 1, 2014 at Thomas Jefferson University. Kathie presented the draft agenda. Two rooms will be available with wireless connections. Hotel arrangements need to be made as soon as possible. We need to get the information out so those involved can make arrangements. We will begin with introductions, purpose of the meeting, overview of training materials and then divide into two groups (levels one and three), revise and finalize training materials. The second will start with discussion of production materials and funding and then discussion of process training, summer pilots, regional training teams, train the trainer, targets for fall 2014 and finally Special Olympics planning, presentation of training processes, summer pilots. Mary may want to give a presentation on family caregiving.

Kathie shared some of the templates from the trainings.

They have been working with Hospice of America. In 2015 they will be focusing on dementia and end-of-life care. There may be opportunities for collaboration.

Some organizations are interested in working on cultural diversity, possibly translations of the materials and end of life. Kathie will be meeting with them March 13. They are very interested in regional trainings and are looking for ways to help fund us.

Levels I, II and III - Nancy spoke of Level II and putting materials from EDSD with Lucy and Melissa; person-centered care; and support through the pre-diagnosis period. Decisions are being made as to which level certain topics will be assigned. The most important issue is developing the training materials and then worry about where to put them. All Level co-chairs meeting this Thursday.

Levels I and III continue to be worked vigorously. Kathy Service noted it is just “getting the work done”.

The summary of Group T efforts will go out after their next Level-chair meeting. Some members noted they feel a bit out of touch but were assured detail will be sent to them for comment.

Re Level 4 – will get together by phone next week and then on to powerpoint.

2)  Annual meeting

The “save the date” and the “call for presentations” have gone out. No one has submitted for NTG as yet. Registrations have started. Seth is going to submit a presentation. Baldev is thinking of presenting on epilepsy and IDD. Once all the requests are in, it will be decided what time slots will be assigned.

The Tuesday morning panel discussion (9:00 to 12:00) with Michelle Murphy, Leone, Mary and Elizabeth Bodine and this will lead into the national speakers (Sharon Lewis, Donna Meltzer, John Coleman, Nancy Phaler, Laura Coleman). We are hoping Maria Shriver (with Tim Shriver as a backup) will be directing the national panelists.

On Wednesday morning the plenary will be on research. Mike Rafii is going to present what he is doing (biomarkers). Derek McFade (researcher on autism) will be coming. Others also want to present so there may be a panel on research.

Tuesday night there will be a reception for AADMD and the NTG at the hotel at 6 PM. We may want to consider giving out awards.

We need to organize ourselves so we can help with all the logistics. We need to schedule a planning meeting.

3)  NAPA Meeting was held early February and recommendations are going to be made to the president. Next meeting April 29, 2014, Tuesday.

4)  CARF has issued their standards. Unfortunately they went to press without our recommendations/comments. We hope our views will be included on the next go round.

5)  Matt, Lucy and Rick Rader did a workshop in Nashville with over 200 people.

Kathy will be speaking at the DDNA Conference (May 3-5, 2014) in Orlando

Seth will be speaking in Wyoming in June at a medical conference.

6)  Next Meeting, Thursday, March 27, 2014, 8 PM EST.

Respectfully submitted,

Leone Murphy