Steering Committee Meeting Minutes Thursday, January 31, 2013

Steering Committee Meeting Minutes Thursday, January 31, 2013

Group C: Community Supports

Matt Janicki Attending

Larry Force Attending

Nancy Jokinen Regret

Phil McCallion Absent

Group S: Screening

Lucy Esralew Regret

Lin Nelson Regret

Melissa DiSipio Attending

Group H: Health Care

Ron Lucchino Regret

Baldev Singh Attending

Kathy Service Attending

Attending

Julie Moran Absent

Kathie Bishop Attending

Seth Keller Attending

Dawna Mughal Attending

Nabih Ramadan Absent

Mike Rafii Regret

Advocacy

Mary Hogan Regret

Leone Murphy Attending

Kathy Srsic-Stoehr Absent

Agenda:

1.  Seth announced the formation of a special interest group within American Academy of Neurology for IDD issues. It looks like it is going to happen.

2.  CARF-NTG Update

Matt said they met about two weeks ago in Baltimore to determine what would comprise the standards for programs for those with IDD and dementia. It went very well. CARF is assimilating the information and will then draft a White Paper to circulate for comments. They hope to have the standards ready for next January, 2014. Chris White, Kathie Bishop, Larry Force, Matt Janicki, Rick Rader, Seth Keller, Nancy Jokinen represented the NTG at this meeting.

It also seems that things may be moving in a positive direction with Arc/US.

3.  NAPA Advisory Council update

Seth, Mary, and Matt met with NAPA Council members. The federal task did not have a report which was disappointing.

The NTG screening instrument was handed out. The next meeting is April 29, 2013

4.  Washington, DC AoA, Special Olympics, NIH meetings update

Tuesday at Admin on Aging they met with Bob Hornyak and Jane Tilly. AoA is now under Community Living. Seth spoke of Dr. Harold Pinkus who is in charge of a fellowship program that may be suitable for us.

The group met with Steve Corbin, Special Olympics Headquarters, and brought aging and disabilities to Special Olympics. Tom Buckley, CARF, was also at the Special Olympics meeting. Lukanas, Hollywood/Fort Lauderdale, is opening a new health clinic for people with Down Syndrome and IDD.

At the National Institute of Health, they met with Dr. Yvonne Maddox.. They discussed what NIH is doing with Down Syndrome and aging and how NTG might be able to connect.

5.  NTG Task Group Updates; Where do we go from here?, Documents updates

Group C:

Some of the documents are close to being printed. Nancy Jokinen’s should be out in March. These articles will be user-friendly and available for reprinting from the NTG website.

Kathie Bishop is close and hopes to have the final draft this weekend. She plans to submit it to the Journal for AAIDD.

Group S:

Melissa said she and Lucy have the most current revised version. Lucy is developing the manual. Seth noted we need to thank the field trial people who contributed. The final form is on the NTG website. Matt said it is going to be translated into Italian and German. Melissa has a contact that may be willing to translate into Spanish.

Social Media is an area the NTG needs to explore (Facebook, Twitter and LinkedIn).

Group A:

The Group has been reaching out to families. Mary has been working to get the Alzheimer's Association website up to date to include IDD.

6.  Webinar Updates

Kathie said we need a one-page handout with all the resources and links and how to use the website. Matt said we could use the brochure (under Resources on the website).

Seth said 26 people have registered already and it's a month away. We can have a 1,000 sites participate. It is on our website. The series for March will be $30. It will be archived and people will be able to get CE’s for $10. We need to get the word out.

7.  Workshop Updates

5/23/2013 - Bangor Maine

9/12-13/2013 - Prince George, BC, Canada

November 2013 Richmond

Baltimore is interested

Minnesota is interested

Children's Hospital in Philadelphia is interested

Seth notes a local driver is necessary for successful workshops.

8.  ADSSP update

Alzheimer’s Disease Supportive Services Program under AOA provides grants and have asked the NTG to do a presentation for their grantees on Dementia and IDD. Seth will be doing the presentation on February 14, 2013.

9.  Our next meeting will be Monday, February 25 at 8 PM EST

Respectfully submitted,

Leone Murphy