NTG Steering Committee Meeting Minutes July 19, 2011

Group C: Community Supports Matt Janicki [email protected] Attending Larry Force [email protected] Absent Nancy Jokinen [email protected] Attending Phil McCallion [email protected] Attending

Group S: Screening James Acquilano [email protected] Attending Lucy Esralew [email protected] Attending Lin Nelson [email protected] Attending Kathy Service [email protected] Attending

Group H: Health Care Ron Lucchino [email protected] Absent Baldev Singh [email protected] Attending Julie Moran [email protected] Attending Kathie Bishop [email protected] Attending Seth Keller [email protected] Attending

Advocacy Mary Hogan [email protected] Absent Leone Murphy [email protected] (Secretary) Attending

Guests Rick Rader [email protected] Attending

Agenda:

Roll Call at 8:05pm. Seth introduced Rick Rader, VP of Policy, AADMD Past President.

1. Update on events since June 6th

Matt thanked all who participated in St Paul 6/6/11. The meeting went very well with lots of positive feedback. Thanks to all who went and who contributed beforehand.

The AUCD, Crystal City, Arlington, VA (outside of DC) has offered us a meeting room at Silver Springs, from 10:30 am to 2:30 pm. A number of Fed’s who are involved with Intellectual Disabilities will be there to speak to AUCD. We hope to get some time with them for our Group. We need a draft report to distribute for comment between now and then. We want to be prepared to discuss the implementation and integration of the report at the 11/8/2011 meeting. We also plan to invite leaders of the national organizations located in Washington to give us some time.

2. Strategic Planning and Work to Deliver Products

a. Evaluation of use of DSQIID (Group S) – Lucy Esralew notes the Group wanted to focus on identifying screening tools that can be used as a "first pass" by caregivers, professionals and families at the St Paul meeting. DSQIID is one of many screening tools and showed some promise as it was field tested in the UK and Pennsylvania with data being collected on the Pennsylvania-adapted version. They are in their second year of testing. Not all screens have been evaluated for a wide variety of reasons. The Group evaluated a limited number of instruments but not nearly all (due to time and permission issues). For the St Paul meeting, the Group decided to go with the DSQIID and focus on early signs of dementia and public awareness.

Regarding the DSQIID, Lucy met by phone with Dr. Carl Tyler and Melissa DiSipio Desipprio. One thing that needs to be worked on is scoring. The original instrument has scoring metrics. The adaptive version is not so clear. Changes in behavior is one of the first adaptive changes that needs to be evaluated. The earlier we see someone the better and more useful we will be. The biggest problem is to get the individual to a professional for evaluation and possible treatments.

Scoring of these adaptive changes needs to be determined. Lucy has an August 18, 2011, skype conference with her Group Dr. Deb. Later in August another meeting with Dr. Tyler and Melissa DiSipio Desipprio (August 29) to deal with the scoring issues and a summary page for new and worsening symptoms.

Lin Nelson added comments: 1. Perhaps we should call it other than a Dementia Screen; UCLA field trials are calling it Atypical Aging Screen; 2. Identify early symptoms in people with Intellectual Disabilities using DMR and NBAP (1st studies done in 1989 on NBAP at UCLA); 3. We need to assess emotional and behavioral changes, also social and cognitive changes, since these are precursors to early onset dementia. Field Trials on the screen are being started in California and will be soon in Texas.

Lucy notes if the primary responsibility is with the professional and family caregivers, the DSQIID may be the tool to use as opposed to these other tools.

Jim Acquilano liked the idea of taking “Alzheimer’s” out of the screen and making it more generic, i.e., “changes” rather than imply dementia already “exists”. Once an initial screen is done then a more comprehensive screening by professionals can be done if indicated.

Lucy notes that the NTG should not get behind a particular instrument for professionals as there are so many screens to which professionals are already connected. The NTG is in its best position to make resources available, one of which might be the DSQIID.

Lin notes that the earliest signs of dementia are emotional and behavioral. All agree that we should not limit to Alzheimer’s as the only type of dementia. Seth expressed interest to tap into opinions and input from all NTG members. Lucy concurred. We owe them communication and outreach. b. Publishable Medical Care Practice Guidelines (Group H)

Working on publishable documents. Julie Moran had written this for 6/6/11 and has continued to work on it. Matt suggested adding comorbid conditions. Baldev Singh suggested adding preventable factors like “not smoking”, appropriate body weight perhaps as treatment and risk factors. The group discussed adding treatment of seizures versus should it be a separate article.

Nancy Jokinen forwarded two articles that might be helpful to the NTG. Seth will see about putting the articles on the website for all of us to have access and resource source.

Rick Rader said to include the latest information coming out of psycho-neurology and future research and prevention.

Seth suggested we need to “regroup” Group H to focus on Practice Guidelines and how to get there. Julie suggested the regrouping should revolve around generating “focus questions” rather group editing. c. Publishable Social Care Practice Guideline (Group C)

Nancy said she wants to make NTG “real” by eliciting care reports and how “the practice” actually happens. We need to have several different family stories that are diverse and in different settings (residential placements). Phil noted there are existing guidelines and we need to focus on what works and what needs work including families and direct care staff.

Lin Nelson asked if some attention could be paid to people with Intellectual Disabilities and dementia who don’t have appropriate residential placements. It would be important to include ideas for planning for long term care. Matt asks to include emotional components of the issues for care givers.

Nancy notes it is important to link back to NTG and to publicize Group meetings to encourage participation. d. Handouts, flyers, broadsheets, etc for advocacy (Advocates) deferred because Mary Hogan was not able to attend. e. NTG Document

“My Thinker is not Working” is a first cut to get things rolling. Matt will put it on “goggle docs” and solicit info from NTG Steering Group to flesh out selling our product – who, what where, when and how. This is the public face of the NTG and needs to appeal to the readership. The title was coined by “Ray” a fellow Matt met who was living in a group home and how Ray “self-described” what was going on in his life. Seth will have John Hood post it on our site and then announce to the Steering Group that it is there. Time line – by later part of August to edit and get to full NTG.

We need to identify and address the pertinent issues regarding financing and funding with respect to Intellectual Disabilities and dementia.

3. Planning for November 8th AUCD Conference

AUCD Crystal City, Arlington, VA (outside of DC)

Meeting is in proximity to the Feds. Sharon Lewis will be in the building. We will actually present the issues. We need to be able to say “This is what we want from you”

We will need a short list of whom we should invite. We have space for 30 people. We had 27 people in St Paul. Seth said AADMD has hired a PR person who may help us with corporate sponsorship to fund this. Those who plan to attend should book hotels now. There are many hotels in the area. You don’t have to pay for full conference attendance.

4. Website and Education program

We need to decide what we would like our website to be designed like. We need to put effort into the website.

a. planning for Phoenix AADMD conference in May 17, 18, 2012 (for the West Coast) and Charlotte in June, 2012 AIDD conference (for the East Coast)\)

The NTG could possibly do a presentation at each conference.

b. Webinars between now and next June

Seth with help from Mary Hogan did one already on IDD Health Issues. Seth has another Webinar scheduled for July 19th on Hospital Care and IDD. Possibly the next one would be on early detection, screening and warning signs. This is a great way to get both information out there and to get the NTG’s name out there.

5. Follow-up on NAPA and ADRC Activities – no updated info at this time.

Sharon Lewis said she will lobby for us but we’re not sure if the actual meeting was held. Matt will follow up on this.

6. NTG Activities over the Summer Basically the work we previously discussed.

7. Upcoming Steering Committee meetings

Seth would like to go back to monthly meetings. The Group prefers week-days and the West coast folks appreciate the evenings. The week of August 22nd looks good for most members. Seth will survey the Group for best day.

The Meeting was adjourned at 9:40 pm

Respectfully submitted,

Leone Murphy