Steering Committee Meeting Minutes Tuesday, September 30, 2014
Group G: Guidelines for dementia capable community homes
Matt Janicki ttending
Nancy Jokinen Attending
Tom Buckley egret
Group C: Community Supports
Matt Janicki ttending
Larry Force bsent
Nancy Jokinen Attending
Phil McCallion Absent
Group S: Screening
Lucy Esralew Absent
Lin Nelson bsent
Melissa ttending
Group H: Health Care
Ron Lucchino Absent
Baldev Singh ttending
Kathy Service egret
gret
Kathie egret
Seth Attending
Dawna ttending
Nabih bsent
Mike bsent
Group T: Training
Kathryn bsent
Kathie egret
Group A: Advocacy
Mary Absent
Leone Attending
Kathy egret
Sara Absent
Agenda:
- Group G Updates
Nancy and Matt reported on the recent meeting to draft guidelines on Dementia Group Homes. Tom Buckley and Matt and Nancy have worked very hard to develop the program. Meeting is 10/3/2014 in Vancouver. 30 people have registered. Framework will be presented.
Mattsaid an East Coast meeting will be held on November 8, 2014 in the afternoon in Washington.
The goal of these meetings will be faster feedback from the participants and this will help determine the important aspects to be covered in the document. If people cannot attend they will be contacted for comments.
It is expected that an article for publication will be the outcome. It is important for all the publications to relate to each other.
- Group T Updates
Seth said a teleconference is going to be held to discuss how the first two pilots for training have gone and involve the evaluation team members. Melissa said they are hoping to schedule a training for Philadelphia in the spring. The pilot is two days of power points and then a third day will eventually be added to provide a “train the trainer” component. Eventually the trainings will be “level based" on the participants’ involvement in providing care to people with IDD and dementia.
- Group S, C, H, A Updates
Group S – Melissa said the manual is being translated to Spanish. It will probably be ready the first of the year. Melissa and Lucy need to collect more data.
Group C - nothing new to report
Group H – The authors, and in particular Dawna and Matt, are working on the re-writes. The article has been strengthened and is now more focused on advocacy. It still needs some more minor tinkering but is close to resubmission.
Group A - nothing new to report
- NDSS Booklet Update
Matt will follow up with Sara Weir to see where she is at. Some money has been allocated or printing, etc. Julie Moran and Mary Hogan have been involved.
- NAPA Update
Matt noted the next meeting is 10/27/2014. Matt and Tom Buckley will be present.
- 2015 Meeting Update
Los Angeles Annual AADMD-NTG Conference– Sunday, Monday, Tuesday, 7/26, 7/27, and 7/28/2015 will be held in partnership with AADMD and Special Olympics
Other agencies likeUIC, IASSID Academy, DDNA, AACPDMwill also be solicited. We will be setting up a NTG 2015 planning committee to help plan for the meeting. Local Los Angeles partners, including those associated with UCLA and USC, will be contacted.
- White House Conference on Aging
The White House Conference on Aging will be held next year in July. Nora Super needs to be informed that IDD needs to be included. See Attachment 1 (Letter to N Super)
- Special Hope Grant Update
Rick Rader, Lucy Esralew, Phil McCallion and Seth Keller have put together a grant request (the request asks for $50,000 for one year) from the NTG for the Special Hope Foundation to fund Telehealth. We have partnered with Slayback Health for technical support. It was submitted last Friday. We expect to hear by 1/31/2015.
- The October Meeting will be October 30, 2014, 8:00 pm EST.
Leone Murphy
Attachment 1 – letter to Nora Super
October 1, 2014
Ms. Nora Super
Executive Director
White House Conference on Aging
Department of Health and Human Development
Washington, DC
Dear Ms. Super:
We serve as the Co-chairs for the National Task Group on Intellectual Disabilities and Dementia Practices, a body specifically created to advocate for adults with intellectual disabilities affected by dementia, as well as their families and caregivers, and the organizations that serve them. In discussions within the National Task Group, and with colleagues within other organizations involved with Alzheimer’s disease advocacy and with those serving older adults with intellectual disability, a need to integrate the needs of this group of older adults within the discourse at the White House Conference on Aging became evident.
As noted in a recent article that appeared in the Chicago Tribune (“Down Syndrome and Alzheimer's: A Double Burden”), the rates of persons affected by this insidious disease are increasing and – with respect to adults with Down syndrome – the onset is often at an earlier age. While our task is to address neuropathologies in older age among adults with intellectual disabilities, we are also concerned with healthy aging and promoting wellness as means of delaying or obviating these diseases. In addition, we concern ourselves with models of long-term care and means of helping states and localities better care and support people with intellectual disability as they age.
As the Conference discusses its broad themes (retirement security, long-term services and supports, healthy aging, and realizing the vision of the Elder Justice Act), it is the interest of the National Task Group to provide input into the discussions related to long-term services and support and healthy aging … as well as the others. We see the broad need to more effective and financially viable community dementia care settings– in particular a network of small group homes—and more realistic and functional supports provided to families and other caregivers who provide home care to adults with intellectual disabilities affected by dementia.
The National Task Group is a multi-constituent organization and uses its forums as a means of garnering input into its advocacy efforts in relation to the National Plan to Address Alzheimer’s Disease as well as state and local services promotion and development initiatives. In this vein, we would like to mobilize our various constituent members to organize and hold WHCoA-related listening sessions across the country, often in partnership with other entities. To this end, we ask that your office recognize the National Task Group and sanction our listening sessions. We also ask the National Task Group be offered relational status to the WHCoA and invited to any national meetings organized to plan and develop events that should include a voice for older people with intellectual disabilities.
We look forward to supporting the WHCoA efforts emanating from your office and being involved with promotional activities to elicit public thought and comment related to aging, dementia, and intellectual disability.
Sincerely,
Seth M. Keller, M.D.
Matthew P. Janicki, Ph.D.
Co-Chairs, NTG