NTG Steering Committee Minutes of Monthly Meeting August 28, 2014

NTG Steering Committee Minutes of Monthly Meeting – August 28, 2014

Items discussed

1.NTG Curriculum.Kathie Bishop and Kathleen Pears provided an update on the work of the curriculum development workgroup, noting that a pilot of the two-day presentations will be held in Edmeston, New York on September 4/5.Kathie will cover the two days as the registrants were insufficient to cover the costs of Kathryn or others.The expected attendance will be about 50 persons, with 35 franked from among Pathfinder Village staff.The format and content of the current draft of the two day workshop will be tested with respect to the presentation of materials, content as related to proficiencies, and teaching media.Several other pilot sites have been designated and the piloting will continue over the next two months. After each pilot the workgroup will examine the evaluations and confer on any adaptations or revisions.Following the discussion on the Edmeston pilot, the necessity of obtainingcopyright protection for the intellectual property represented by the whole curriculum package was discussed.It was suggested that the NTG should seek protection as there was concern that some unwanted appropriations of the content and format might occur.It was agreed that the curriculum would be available with permission, albeit the NTG still needs to work out the letting practices and fee schedules.Further discussion ensued about the way the curriculum would be used, with two functions noted: the availability of commissionable workshops, with a possible train-the-trainer component, and distinct modules made available to organizations and training sites resulting from a permissive use agreement.Noted also was the relationship the NTG has with HRSA and the potential to have the NTG’s curriculum integrated into the universal curriculum being developed by HRSA for use by the GECS (as per the workforce enhancement aspect of the National Plan).All these elements warrant further discussion and administrative actions – perhaps leading to the adoption of a NTG fair use policy, which would also protect the interests and contributions of the curriculum development team members (and others).Seth and Matt were asked to look into the copyright possibilities and it was decided that the use issue warranted further discussion.

2.Group Home Guidelines.Nancy Jokinen provided an update on the progress of the group home guidelines workgroup and noted that an initial correspondence had gone out on soliciting comments on a working definition of ‘dementia capable.’A great deal of reactive commentary was received and she and Tom Buckley, who are the co-chairs, will begin to circulate a framework for the guidelines to get as much input as possible.Matt Janicki noted that there was a request to the Gerontological Society of America to hold a workgroup meeting during its annual conference in November, in conjunction with the Lifelong Disabilities SIG.The purpose would be to review the draft of the guidelines and involve national association members and federal officials to get feedback.

3.NTG Financial Status.Seth Keller reviewed the financial status of the NTG, noting that the AADMD is still reconciling its books relative to the Princeton Conference;the expectation is the some funds would be available from the revenues.Seth has requested that the AADMD provide a balance report on the NTG funds and that this would be forthcoming once the Princeton accounting was complete. A discussion ensued over the means that the NTG will need to employ to setup accountability for its funds, especially as the curriculum development effort will be produced a flow of and draw on funds.Tabled for future discussion is the establishment of a more formal system of overseeing NTG funds and potentially establishing by-laws or operating procedure.

4.Telehealth Project.Seth Keller and Phil McCallion reported on the status of the Telehealth grant project, noting that Phil is working up the grant proposal which has to be shortly submitted.Seth indicated optimism on the receipt of the grant which would enable the NTG to hold a telehealth program. If awarded, the grant would be processed via the Orange Grove Center in Tennessee as the AADMD is ineligible to be the agent for it due to a conflict of interest.The grant is provided by The Special Hope Foundation.

5.Group Reports.Representatives of Groups H, S, C, and A provided quick updates on the status of activities.Kathie Bishop noted that the current iteration of the health advocacy paper, submitted toIntellectual and Developmental Disabilitiesand sent back for revision, is being circulated among the author team.She expected closure on the revisions within the month.One suggestion was made to add in staging related to health advocacy, and Baldev Singh volunteered to provide new text to cover this area.With respect to Group S, Seth reported no new activities are underway, and the same for Group C according to Nancy Jokinen.Seth noted that he was hoping for Mary Hogan to come back and continue her work with Group A and will check with her about her status.Seth also reported that he and Matt have authored a summary paper on the NTG for theJournal of Policy and Practice in Intellectual Disabilitieswhich will come out in the September 2015 issue.An advance copy of the paper was sent to all Steering Committee members.

6.NDSS and AIDD Projects.Matt Janicki reported that NDSS has decided to postpone its planned ‘summit’ on Down syndrome that was to be held in Washington onOctober 1st.He also noted that he is meeting with Sara Weirs onSeptember 9thto discuss the joint NDSS-NTG publication of caregiver dementia information.More will be reported after the meeting and members will be recruited to help develop this project.Seth Keller queried on the status of the AIDD fact sheet project.Matt explained that the NTG had submitted a proposal in March to develop 10 or so fact sheets on dementia and ID for the AIDD, and that the AIDD had noted this action in the 2014 iteration of theNational Plan to Address Alzheimer’s Disease.He and Seth got an email from AIDD at the beginning of August asking the NTG to do the project but with reduced funds ($5,000 instead of $20,000) and having to deliver 10 completed and vetted fact sheets to AIDD bySeptember 30th.Given schedules and workloads, as well as members’ commitments to vacations and other obligations in August and September it was decided it would be impractical and most likely impossible to deliver the 10 fact sheets bySeptember 30thand we demurred on the request.It was left that AIDD would like to use FY 15 funds for this project and will get back to us when they areready to contract with us.

7.2015 White House Conference on Aging (WHCoA)The NTG will need to consider having a presence at this conference which is held every 10 years. We will be looking into creating listening sessions to help collect input from our constituents. We will also be reaching out to various groups and leaders to help determine how we can get invited to this meeting. So far we have made initial queries to NDSS, Sen Markey of Massachusetts via PCPID, as well as ACL.

8.NAPA Updates.Matt Janicki reported that the next NAPA Council meeting will be onOctober 27thand he will attend and offer comment during the public comment period.The NAPA subcommittee on advanced dementia will be holding its second meeting onSeptember 8thand both Matt and Tom Buckley will attend.The plan is to provide comment to the subcommittee on relevant issues to ID. Kathy Service offered to provide her insights on this topic to Matt and Tom in advance of the meeting.

9.2015 Conference.Seth Keller noted that planning is proceeding on the 2015 AADMD-NTG conference to be held in Los Angeles (July 26-28) at the JW Marriott Los Angeles L.A.He noted that the hotel has the facility for a large meeting and that we needed to begin to think about how the NTG wanted to structure its program.In Princeton, we had use of one room with a series of 30 minute presentations over two days. In LA we may have more rooms available so careful thought has to be given to how we structure the presentations and how many will be held.Preliminary thinking on the main NTG plenary is that the focus would be on research as we will have access to several key people on the West Coast.One thought is a session with Mike Rafii of UCSD, Wayne Silverman of Kennedy Krieger, and others.We have an offer from our colleague in Italy, Giorgio Albertini, to underwrite the attendance of Dr. Jeanne Lawrence, of UMass Medical in Worcester, who has been doing some interesting work on a genetic and epigenetic approach to silencing the extra chromosome 21 in vitro in embryos with Down syndrome and would speak on applications to preventing Alzheimer’s.Seth also noted that the planning group is seeking to have Maria Shriver provide a presence at the general meeting.Seth suggested we discuss setting up a program planning committee at our September meeting.

Next NTG Steering Committeecall was set for8:00pmonSeptember 25, 2014.