Steering Committee Meeting Minutes Wednesday, April 10, 2013

Steering Committee Meeting Minutes Wednesday, April 10, 2013

Group C: Community Supports

Matt Attending

Larry Absent

Nancy Attending

Phil Regret

Group S: Screening

Lucy Attending

Lin Nelson Absent

Melissa ttending

Group H: Health Care

Ron Regret

Baldev Singh ttending

Kathy Service ttending

tending

Kathie egret

Seth ttending

Dawna ttending

Nabih egret

Mike egret

Advocacy

Mary ttending

Leone ttending

Kathy egret

1)NAPA update

Matt said the next meeting is April 29th. Mary and Matt are planning to attend. NAPA will be discussing international research that is being conducted.

The federal task report is still shaping up in this area. If it is not available, Matt will fill them in on what we are doing.

Mary noted there is a vacancy at NAPA on the non-federal Task Force. Mary has written a personal request to Secretary Sebelius that a person with IDD experience be selected. The NTG has written a similar request as well. Rick Rader has sent in his name as a candidate.

2)CARF update

Matt said the CARF Board is 100% behind our efforts. They will be developing program standards for people with IDD and dementia.

3)New NDSS steering committee member

Julie Moran was lead author for the recently released documents on Aging and Down Syndrome: A Health and Well-being Guidebook. Mary Hogan, Kathy Srsic-Stoehr, Kathy Service and Susan Rowlett, (all NTG members) were contributing authors. The publication is available online and in print form, free of charge. Mary has continued contact with NDSS over the course of the last year either through email, phone or contact when in Washington, DC.

Sara Weir is very much involved with the issues we are concerned about. The NDSS has asked that Sara Weir become a member of the NTG Steering Committee. Sara is the VP of Advocacy & Affiliate Relations at NDSS. The NDSS is very much interested in increasing their involvement in the issues central to the NTG efforts. Seth took a vote of the Steering Committee and all are in favor. Seth will be reaching out to her to inform her.

4)Group C update

Nancy said Phil has been very busy with "friendly" guidelines. These will be posted on the website soon.

5)Group H update

Julie Moran submitted her publication to the Mayo Clinic. It has been accepted and needs some revisions. We’ll need to think about the next steps for this document.

Kathy Bishop has sent out copies of her document and is asking for Group H to review.

6)Group S update

Lucy said the screening tool (EDSD) has gone viral. There have been a lot of inquiries. Lucy is busy drafting the manual aiming to have it ready by end of month.

Melissa said she finished the final edits to the feedback letter to the participants. The letter will keep in touch with all involved.

Lucy notes the current challenges are: to develop “scoring”; and the collection of data. We need to encourage feedback and should ask for it in the manual

7)Group A update

The Group has nothing new to report. Mary continues to communicate regularly with a network of families across the US and with many providers as well. Mary will be at the NAPA April 29th and will update the Advisory Council on the family in Nebraska to whom she has been referring over the last several meetings. The Council seems to understand this real-life scenario. The elderly parents, ages 88 and 83, have proven to be strong advocates for their son Richard after networking and with not real assistance from their local health and human service provider they have located a facility for developmentally disabled adults. After residing with his parents/guardians for 40 years Richard will make the move on Monday.

Mary and another family member, Elizabeth Bodien, have worked hard to help edit the FAQ document.

8)Webinar update

Seth said Part One has been very successful. Part Two will be starting in early May. This series will be more related to healthcare.

There is currently a limit of 100 participants but they are working to increase this number. The webinars are archived on the website and everyone will have access to them.

9)Workshop and meetings update

Ontario – Nancy reported that she and Seth did four workshops in five days. At least 70 people attended each one. There was a balance between the IDD sector and the healthcare sector. There is a lot of interest in both the screening tools and the practice guidelines. Nancy and Phil completed a showcase event for the Senior Health Knowledge Network where they presented the practice guidelines, blogging about the practice guidelines and then a webinar.

Another workshop is planned for the fall.

Baltimore and Virginia are two other workshops being developed.

Maine is scheduled for May.

Kathy Service is doing a poster presentation in July in Boston. Dawna has a price of $150 for 4,000 brochures which is very good pricing. Seth will look into support from the AADMD for this effort.

Dawna received funding for a pilot study "assessing the gap family caregiversface between the need for services and what they actually receive." (family caregiver needs)

10)Research update

Matt discussed the action plan of the National Dementia and Intellectual Disabilities 2012 – 2013 (April 2013). It lists the goals, recommendations, and the current status. Seth suggested sending it out as an "info blast".

11)Schedule next meeting

Next meeting will be May 8th at 8pm, EDT

Respectfully submitted,

Leone Murphy