Steering Committee Meeting Minutes, Thursday, March, 26, 2015, 8PM EST

Steering Committee Meeting Minutes, Thursday, March, 26, 2015, 8PM EST

Group C: Community Supports

Matt Janicki Attending

Larry Force

Nancy Jokinen Attending

Phil McCallion

Group S: Screening

Lucy Esralew Attending

Lin Nelson

Melissa DiSipio Attending

Group H: Health Care

Ron Lucchino

Baldev Singh

Kathy Service Attending

Attending

Kathie Bishop Attending

Seth Keller Attending

Dawna Mughal Attending

Nabih Ramadan

Mike Rafii

Julie Moran

Group T: Training

Kathryn Pears Attending

Kathie Bishop Attending

Group A: Advocacy

Mary Hogan Attending

Leone Murphy

Kathy Srsic-Stoehr

Admin:

Nina Bennett Attending

Tom Buckley

Andrew Griffin Listening in

Nicole Cadovius

Agenda:

1.  NTG Training Curriculum Update

Update on the 4 trainings: Fort Lauderdale, 3/31 and 4/1; Philadelphia, 4/7-4/9; Kansas City, 4/27-4/29; and Schenectady, 6/9 – 6/11. There will be train the trainer sessions held on the third day starting with the training in Philadelphia. The third day in Ft. Lauderdale will focus on discussion with federal and state employees who will be in attendance. Numbers are looking good for attendance for Ft. Lauderdale, and especially for Philadelphia. Will need to focus marketing on Kansas City and Schenectady in the upcoming weeks. The Trainer Manual (for the third day of the workshop) is being edited. There has been interest in bringing trainings to California, Maine, Wisconsin, and South Carolina. Discussed the idea of using a series of webinars to expand on the 3-day topics. The webinars would be free for regional trainers for a year and other interested parties would pay to participate. NTG experts and presenters would be involved in delivering these webinars. Segments of the curriculum could be used to tailor the trainings to specific organizations. Need to find a way to record when and where the curriculum is being used so there is some idea of the spread across the country.

2.  Easter Seals

Easter Seals in Chicago has expressed interest in exposing chapters around the country to NTG in one way or another.

HRSA-

Grant proposals went in for GWEPs; find out who is funded sometime in June. There may be opportunities for training with GEC at Johns Hopkins.

ACL-

5-6 sites have indicated plans to do something related to IDD; may try to apply for NTG trainings. Several are doing fact sheets, trainings, curriculum.

3.  July LA Meeting Update

There were 75-100 submissions overall on different presentation topics for 3 days, with enough topics related to NTG. Tuesday the 28th (day number 2) there will be a plenary on Innovations and Research Advances in Dementia and Down syndrome followed by break out sessions. Details have not been decided yet on the organization of the day. The submission deadline is April 1. Need volunteers from steering committee to discuss organization for the NTG day. It was decided that the dementia track will be one day to make it more affordable for people interested in dementia topics.

4.  Golisano Grant Update

Working on a several state grant proposal on community development and capacity building in IDD and dementia. States involved include Alaska, Arizona, and NY. This will be a several year grant to support NTG and AADMD work.

5.  Telehealth Update

Update on grant through Special Hope Foundation through Orange Grove, using Slayback Health Tech Services for chronic disease model. The core group involved with the grant partnered with a community provider agency, RHA in North Carolina. The grant has evolved in terms of complexity. The group is looking at working with Project Echo (through University of New Mexico)— an organization formed to democratize medical expertise in underserved areas or areas with long waiting lists for services. They use technology to provide specialty expertise in several areas, including dementia and geriatrics. Had conversations about how the Telehealth project might fit in with Project Echo work. The core grant group has a meeting on 3/27 with RHA and will talk with them about Project Echo and Hope Resources, an organization in Anchorage, AK. Will talk about how this will this fit into bigger picture of our educational training, and more about nuts and bolts of the project. The project needs to be a sustainable model to be reimbursable so that providers are not losing money.

6.  Fact Sheet Update

Discussed progress on developing 10-12 fact sheets.

7.  NDSS meeting and booklet update

NDSS will get back to us after April on the Booklet. There will be an NDSS meeting in Seattle on June 27, sponsored by NDSS and Down Syndrome community. Some NTG members may participate.

8.  NAPA update—April 28th there will be a meeting

9.  Group Updates

Group G—working on another version of home guidelines. Will have something out soon for review. End product will be similar to the other guidelines up on NTG website. Publication will also be an end-goal.

Group S—looking at how and where people are using EDSD. Working also on Serial Assessment Function Form, form variation of EDSD (Likert based scale) that looks at community and provider- based support, ADLs, severity of symptoms. Looking to get it developed as an online tracking system accessed by families and provider agencies to track individuals over time. Looking for money to do this. Prospects look good.

Group C—Spanish translation completed for community guidelines.

Group A- Working on a family fact-sheet.

Group T-need to work on July through September schedule.

10.  April meeting date set for April 30, 2015 at 8:00 PM EDST