Steering Committee Meeting Minutes Thursday, September 20, 2012
Group C: Community Supports
Matt Janicki
janickimp@aol.com
Larry Force
Lawrence.Force@msmc.edu
Nancy Jokinen
njokinen@shaw.ca
Phil McCallion
mcclion@albany.edu
Attending
Attending
Attending
Absent
Group S: Screening
Lucy Esralew
Lin Nelson
Melissa DiSipio
Attending
Absent
Attending
lesralew@trinitas.org
lnelson@mednet.ucla.edu
mdisipio@pmhcc.org
Group H: Health Care
Ron Lucchino
rvluc@comcast.net
Baldev Singh
bsingh@wihd.org
Kathy Service
kathy@ytte.org
Julie Moran
jamoran@bidmc.harvard.edu
Kathie Bishop
bisbur1@earthlink.net
Seth Keller
sethkeller@aol.com
Dawna Mughal
mughal001@gannon.edu
Nabih Ramadan
nabih.ramadan@nebraska.gov
Attending
Regret
Absent
Absent
Regret
Attending
Attending
Attending
Advocacy
Mary Hogan
Leone Murphy
Absent
Attending
1.
maryhogan@comcast.net
leonemur2@yahoo.com
National Project
National Plan called for special task force to include IDD and Down Syndrome. For now it has only been
set up under federal agencies, including CDC, due to cost. A document is being prepared for submission
(in early January) to the Secretary regarding the four populations (early onset dementia, minority
populations, IDD &Down Syndrome, and Group Number 4. Matt knows at least three people on the
National Task Force who will be sympathetic to our cause.
Lucy said it would help if Matt and Seth have a conversation with Dr. Mette Pederson of AIDD to prepare
for the listening session next week. Barbara Wheeler is invited to participate along with the NTG. We
should try to be helpful to Dr. Pederson. The areas to be discussed (and areas in which she is interested)
are:
a) Accurate and timely diagnosis
b) Access to Care
c) Education on Alzheimer’s Disease for non-specialized Practitioners providing care for the
populations
d) Special considerations for these population
Dr. Pederson has been assigned liaison responsibilities for the National Alzheimer's Plan. It is
Wednesday, 9/26/2012 at 8 PM. Please respond to Matt or Seth as seats are limited.
2.
Group C
Nancy notes Group C has a draft document discussing community services & guide lines which has been
passed on to John Hood to be set up on Google docs with links to Group C members and the NTG
Steering Committee and finally, after additional revisions, on to all Task Force members. It is a 40 page
document. Larry thanked Nancy for all she did to make this happen.
3.
Group H
Seth said they had a meeting with Julie Moran to review her document. Julie contacted the Mayo Clinic
Proceedings Journal and has been given information on how to proceed with publishing the document
with MCPJ. The Task Force will get a chance to review it before it is published.
Kathy Bishop is looking at an IDD Journal or possibly Exceptional Parent Magazine to publish her
document. They publish digitally. Lucy noted a downside with respect to EPM as its target audience is
“parents of children or young adults with disabilities”. Dawna notes another possibility is Practical
Neurology.
4.
Group S
Lucy reported that they got most of the test records and instruments back (NTG DST’s). She has seven
test sites. Rick Rader has promised another batch. Lucy connected with Betsy Benson, Ohio State, and
Marge Barnheiser. Betsy heads a Parents of Down Syndrome Adults Group and Betsy felt that family
members of her group who would want to participate. This is important as we have professionals
completing but this would be the first “family member” completion. They have 33 completed records.
Lucy has a graduate student helping her. Marge Barnheiser heads the Central Ohio Down Syndrome
Association.
Is this a useful tool? Will it be helpful to families and caregivers? Anecdotally “yes".
Uniformly people say we should have some way to capture a score or summary but no ideas yet on how
to do it. At the annual meeting of NADD, Lucy will be reporting the use of this tool. Lucy and Melissa
will be presenting the NTG DST at the New Jersey NTG conference. Matt and Lucy discussed the need
for summarizing data.
Lucy spent two days at Alzheimer's Conference in Chicago. It was scientific and focused on biomedical
research. The group will reconvene in New Orleans in October.
Tom Blumenthal summed it up by saying that the connection between Alzheimer's and Down Syndrome
is important in understanding Alzheimer’s disease. Lucy was invited to discuss cognitive testing. Lucy
discussed a comprehensive approach to the testing to include emotional changes and functional changes
as opposed to memory only testing. There will probably be a white paper coming from this. Several
pharmaceutical companies interested in biomedical research were represented.
5.
Group A has nothing new to report.
6.
AAIDD
Nancy said they posted the “Thinker Document" under Endorsements (select Policy on the Home page
and drill down to Endorsements). The Gerontology Division made this happen.
7.
Care
Matt has been working with them to develop dementia care standards. Seth said they are looking at
having a webinar to discuss what we actually want to do regarding standardized community care
practices. More info will follow.
8.
Workshops
October 15 in New Jersey. The Arc of New Jersey and Trinitas Hospital are sponsoring an all-day
conference in New Brunswick. Dr. Ted Feigelman will be presenting Aging and IDD with the help of
Seth's slides.
October 17 in LA. Matt said Lin Nelson has been working on this. Registration is going well.
Seth is going to Colorado Springs and presenting on what the NTG is doing. He is then having a
roundtable with state leaders to further network and determine where they want to go. That will be held
11/14/2012.
Matt is looking at something for Chicago in December.
Maine, Connecticut, Texas and Virginia along with BC are also interested in sponsoring an NTG
workshop.
Dawna is working on the brochure and it is posted on the website under resources. Dawna will look into
the printing.
Dawna spoke of being a reviewer for a foundation that will look at Health Disparities. The NTG members
could really benefit from funding. Dawna will travel to DC for training and keep us informed.
Webinars - Kathy Bishop will be coordinator of 9 (1 hour) webinars to run between January and May,
2013.
9.
Next meeting will be October 23, 2012 at 8 PM EDT.
Meeting adjourned at 9:25 PM
Respectfully submitted,
Leone Murphy