Sunnyfield's November 2014 Info Sessions

For those who cannot easily access a PDF on their PCs at home here is a web version you can review.

Click on the link below:

https://drive.google.com/file/d/0B8rZ09ZXFyX7R3lyRDJzMFFRcGM/view?usp=sharing

Living the Good Life - DVD & Podcast launch

Mark Clayton has asked that this event be publicised to Aux. members.

2.00 - 4.00 pm 16th August

There is a PDF with details here:
https://drive.google.com/file/d/0B8rZ09ZXFyX7d09xcDVkSGVDZEk/edit?usp=sharing

Communications Forum - NDIS update; review Strategic Plan 2014-5

Here is a link to the PowerPoint documents used by Caroline Cuddihy and Mark Clayton to present NDIS status and Sunyfield's 2014-5 Strategic Plan.

https://drive.google.com/file/d/0B8rZ09ZXFyX7MGdoSnRjMi14NlE/edit?usp=sharing

You can look at them here or download a copy.

COMPOSE - A clinical study to improve cognitive capabilities in people with Down syndrome

Dear Mark

I would be grateful if you could advise families of people with DS known to Sunnyfield about this study. I am responsible for the Univ of Sydney site.

Best wishes

Stewart Einfeld

Professor, Centre for Disability Research and Policy

Senior Scientist, Brain & Mind Research Institute

THE UNIVERSITY OF SYDNEY
T +61 2 9351 9213  
E stewart.einfeld@sydney.edu.au  | W http://sydney.edu.au/health_sciences/staff/stewart_einfeld.shtml

Subject: COMPOSE - A clinical study to improve cognitive capabilities in people with Down syndrome

We would like to ask for your assistance in letting colleagues and patients who may be interested know about a new nationwide clinical trial to determine whether a medication called BTD-001 can improve memory, language, attention and learning in people with Down syndrome.

Two sites in Sydney are involved in this study –at Neuroscience Research Australia and the University of NSW the research is being led by Professor Rhoshel Lenroot, Dr Robert Leitner and Dr Bruce Chenoweth, while at the University of Sydney the research is being led by Professor Stewart Einfeld.

Trials in an animal model of Down syndrome found that the medication helped learning and memory, and that effects lasted even after the medication was stopped.  Although there is a long history of using this same medication in people, particularly in dementia, this trial will also help to establish safety for use in people with Down syndrome.  Participants in the study take the medication or a placebo for twelve weeks, with several visits to measure its effects on cognition and monitor health.  A family member or carer would also need to attend appointments to provide information about function

As an organization working with people with intellectual disabilities, we would like to ask for your assistance in letting people know about this study through circulating information in newsletters, e-news, email updates, posting a link on your organisation’s website or facebook page, or through displaying our brochure and/or poster promoting the study (both attached; we can send hard copies of the brochure and poster upon request).

We have ethics approval from the South Eastern Sydney Local Health District (SESLHD), the University of NSW and the University of Sydney to conduct this research. If further ethics approval would be required for you to assist in advertising this study, please do contact us.

Further information is available on the study website www.compose21.com. People who are interested can also call a central number, 1300 659 729 to confirm their eligibility.

If you would like brochures or posters or to discuss this further, please contact Karen Burton, NeuRA/UNSW site coordinator on 02 9399 1882 (k.burton@neura.edu.au) or Lauren Rice, University of Sydney site coordinator on 02 9114 4106 (lauren.rice@sydney.edu.au).

Thank you for your assistance in promoting this study.

Sunnyfield Central Coast Auxiliary Minutes of March meeting

Minutes of Meeting 25 March 2014 at CLUB TUGGERAH,

Attending  9

Apologies  5 

The meeting opened 11.15 am.. 

Minutes of the previous meeting 

The minutes of the 25 February meeting had been previously circulated and were accepted as being read.

Business arising from previous minutes

Nil

Treasurers Report

John was absent and no report tabled.

Correspondence

As usual, our correspondence consisted of emails. All have been filed and dealt with 

General Business

The proposal from our last meeting that we should arrange for a representative of the NDIS to speak with us was discussed. There has been a delay caused by the absence of Jill Hall at her electoral office. She has been present at parliament  (she is the opposition whip) and has therefore been difficult to contact. Her electoral officer, Mr Chris Hall has been helpful and has organised a contact at NDIS for us. No arrangements were in place at the time of this meeting.

Bob Devetak advised that he is still in contact with Louise Dibbs who will be well remembered by our members for her assistance when we were establishing the Auxiliary. She is now working with the House With No Steps in  Newcastle, and has therefore some experience with the NDIS launch in the Hunter. Bob suggested she would be a good speaker for us. The meeting agreed and we will plan some suitable time for her if she is agreeable to the suggestion.

Paul reported that he had read a newsletter from an organisation called I D E A S which he had found interesting. Allan is to follow up.

Despite the lack of numbers, this was an interesting meeting and we covered quite a bit of ground. We expect to have some news and developments at our April meeting.

The meeting closed at 12.45

NOTICE of MEETING Sunnyfield Central Coast Auxiliary

DATE 22 April 2014

Note Day   TUESDAY

Note commencement time     11.00am

Note Venue CLUB TUGGERAH, Bryant Drive, TUGGERAH   (opposite Bunnings)

Plenty to discuss this month, including details of our May plans

Hope to see you there.

Allan Holswich

Sunnyfield Auxiliary Central Coast; Minutes of Meeting 25 February 2014 at CLUB TUGGERAH,

Attending  14; Apologies  1  

The meeting was opened by the Vice-Chairman, Dee Ellem at 11.15 am.. She welcomed all and advised that Bob Jones was progressing well after surgery.We look forward to seeing him at our next meeting. 

We noted with sadness the news of the passing of Paul’s son Logan.

Minutes of the previous meeting 

The minutes of the 28 January meeting had been previously circulated.

It was moved and seconded that they were correct as read.    Anita/ Moira.

Business arising from previous minutes

During the previous meeting, we agreed to submit comments to ADHC on the proposed State Disability Inclusion Bill. Two comments were emailed to the instrumentality. These covered the following

1      "The role of the Community Visitor should be strengthened to protect individual people with intellectual disability from the possibility of receiving inadequate service. This is particularly necessary where there is no family member to protect the interests of an individual whose intelligence has been assessed as below normal and who would be regarded as having diminished responsibility for decisions."  

The proposed Act is appropriate for a person whose only disability is physical. It seems to downplay the needs of people with intellectual disability.

2     "A specific item of the Bill should make reference to the National Standards for Disability Services - December 2013. (www.dss.gov.au)"

The proposed Act makes strong reference to Employment Screening, but little mention of the need for suitable qualifications. The National Standards has strong reference to this aspect. 

Further, the Standards impact fundamentally on most of the broader material in the Draft, and its inclusion as a basic tenet of the Bill would seem of critical importance.

We should not expect a reply.

Treasurers Report

John tabled an up to date report on our financial situation. We have a current credit balance of $432.13.

Report approved and accepted John/Ros

Correspondence

As usual, our correspondence consisted of emails. All have been filed and dealt with 

General Business

We had no guest speaker for this meeting. Instead, we had a useful group discussion in which we were able to explore the impact and difficulties we expect in the near future as the NDIS and Person Centred funding is applied to our families.

It is quite apparent that we have little reliable information on the effects we, as elderly parents of people with high support requirements, can expect from the new system.

It would seem that we should be able to gain some knowledge from the experiences of similarly placed family members who have already been subject to the changes which are occurring in the Hunter district.

It was therefore agreed that we should move to obtain specific details for ourselves. We believe that the information we require must be on file as recent experiences inside the NDIS hierarchy, and we should organise ourselves to have these experiences outlined to us from a high ranking NDIS  official.

In achieving this information, we agreed that we should combine to clearly voice our concerns. As an initial step, we will be contacting Jill Hall MP, the member for Shortland, and who has previously been helpful to us, to see if she can facilitate a meeting for us. We are hopeful  for this, but otherwise we will make direct representation to NDIS. All our effort will be to arrange a suitable meeting for the occasion of our next  monthly meeting on 25 March. We are allowing for the possibility of having the meeting in Belmont or Charlestown if necessary. 

Bruce Conn moved that we should allow for the cost of a bus hire if necessary for this exercise. Seconded Allan

The progress on this will be distributed as soon as available.

The meeting closed at 12.45

NEXT MEETING    25 March 2014