NTG Steering Committee
Scheduled Agenda – March 12, 2011:
1) Introduction
2) Group C Update
3) Group S Update
4) Group H Update
5) Website Update
6) Advocate Update
7) DDNA Update
8) Go To Meeting
9) Plans for St Paul
10) Matt/Seth go to Washington
11) Other Organizational Support/NAPA
12) Schedule Next Meeting
Group C: Community Supports
Matt Janicki Attending
Larry Force Attending
Nancy Jokinen Attending
Phil McCallion Attending
Group S: Screening
James Acquilano Apologies
Lucy Esralew Attending
Lin Nelson Attending
Barbara Caparulo Apologies
Group H: Health Care
Ron Lucchino Apologies
Baldev Singh Attending
Julie Moran Apologies
Kathie Bishop Attending
Seth Keller Attending
Advocacy
Mary Hogan Apologies
Leone Murphy (Secretary) Attending
3/12/11 10:00 am – 11:02 am
1. Seth asks all to use GotoMeeting as the vehicle for the NTG group. Seth announced that Brian Chicoine resigned due to Brian’s work constraints. Baldev Singh graciously joined the NTG. Baldev did her residency in Neurology at NY Medical College and stayed on the faculty there. 1982 became the Director of Adult Neurology Westchester Institute For Human Development and became the Medical Director of Westchester Institute For Human Development in 2007. Baldev has been working in the field of developmental disability for 30 years with both children and adults.
2. Group C Update – The document recently sent is a blended draft version shared amongst Matt/Phil/Nancy/Larry/Seth and attempts to start laying out core principles. The 1st draft will be sent to the NTG by next Tuesday or Wednesday and will include: 1. belief systems; 2. principles; 3. reality meets principles; 4. emerging best practices – what is and what could be; 5. recommendations. Nancy hopes to have something later today. Seth will be able to “hand” screen (GotoMeeting) around the NTG during future meetings. Documents will be sent to Group C first and then to NTG.
3. Group S - Lucy – Received 9 screening tools & 4 assessment batteries; 17 respondents to Group S survey along with articles submitted for review. The challenge is how to go through these materials? The strategy developed by Group S consists of developing criteria, over the next 2 weeks, for the review of instruments (to be posted to the AADMD Website). Neither the tool nor the author will be identified; the NTG membership will be asked (along the lines of the criteria/checklist to be developed): 1. what makes sense as a screening tool; 2. what might be better as a fuller or more comprehensive assessment; 3. what are key components identified across these instruments that are important indicators; 4. prioritize for usefulness. Group S hopes the NTG can develop a consensus with respect to what is user-friendly most informative. Group S hopes to have the checklist developed by the end of the month at which point the instruments can be posted to the website for feedback from the NTG. Group S surveys content needs analysis in order to describe current practice in assessment and screening. Lin notes we need to know how well these tools measure for symptoms of dementia in people with intellectual disabilities and ruling out other problems or conditions that may be going on.
4. Group H – Seth discussed ongoing teleconferences and emails setting framework of what Group H will handle and noted complications for Group H (that is, preventive care, diagnosis, work up, treatment outcomes, palliative care, end of life care and overlap with other groups). Julie Moran is putting together a summary (similar to summary by Group C - Nancy and Larry and Group S - Lucy and Lin) covering health issues from a practitioner standpoint which will be coming up this week allowing us to show people what we are doing. We will have another teleconference this week or next to update this. Seth has asked Julie to contact Baldev so Baldev (as a practitioner) can help working the practitioner side on some health issues. Kathie putting together from the health care advocacy perspective: 1. why it is needed; 2. Myths and stereotypes of aging in adults with IDD; 3. system challenges; 4. communication challenges; 5. health care disparities and challenges including lack of training in medical schools and lack of textbook and resources; 6. Disability-specific health care challenges and myths including Down Syndrome, and over-diagnoses (autism, etc); 7. The final Group H position paper will include health care advocacy step-by-step - how do families, friends, agencies, staff perform as health care advocates and how do we build in self-advocacy for individuals finally ending with recommendations and available resources. Kathie will have the first outline to Seth by Monday who will disseminate by rest of group for additions, deletions and corrections. Ron is looking at medications and will write it up.
5. Website Update not addressed.
6. DDNA (7) – Developmental Disabilities Nurses Association been around for a while as a specialty nursing for pediatric and adult nursing care for persons with Developmental Disabilities and has ties to AADMD. Seth has discussed with DDNA re how they fit in the 3 NTG Groups to insure we have a nursing perspective and had a meeting with Mary Alice Willis, Executive Director, DDNA. It is important to work with the nurses in the NTG and to see how DDNA can work with NTG to assist in screening, health care and community support. How this integrates with NTG is to be seen. Kathie notes nurses tend to be the primary clinicians to make sure health care advocacy works and most respected by physicians. Seth feels the nursing perspective is critical.
7. Advocate update (6) – Leone notes Mary joined the community group and responded to their questions who felt this activity is valuable. She continues to work on the brochure for Down Syndrome and contacted Dr Fish at Ohio State to see if there is a graduate student who wants to participate in the NTG as part of a thesis or dissertation. Seth notes Mary wants to deliver a visual and auditory perspective of families of persons with dementia. Seth suggested she contact organizations that might put out webinars or presentations. Matt discussed the MetLife videos and also notes these videos are available on www.aboutalz.org.
8. GotoMeeting – this is a good venue for us to use. The site we are using is for 16 people. Seth also has one for 1,000 people which would be good for webinars. Proprietary system which Seth’s group is funding - $100 per year for a 501(c)3 organization. If you want to use for one of our NTG Groups, see Seth. Nancy asks if there is a toll free number for our meeting. The answer is no but it is toll free if you use GotoMeeting via the internet.
9. Plans for St Paul - Matt – set for June 6th – at Crowne Plaza - AAIDD – has given us space for 30 people. Let Matt know if you are attending. We need to set up break out space. No pre conference registration. NTG is guest of AAIDD.
10. Matt/Seth go to Washington – Matt & Seth going to Washington to lobby April 25th and 26th. Briefing various organizations (AOA, AAIDD, Alzheimer’s Association, NASDDDS, ADD). Hoping to also meet with Steve Corbin, the Senior Vice President of Constituent Services and Support and Dean of Special Olympics University and George Jesien, Executive Director AUCD.
11. New Business - Support for/recognition of parent organizations of NTG members. Any member who wants center/organization publicized on website, send note to Matt
12. Schedule Next Meeting (12) – April 2nd, 10:00 am.