Freddie's blog has really taken off: his friendship book is fabulous

Just last week we introduced you to Freddie's blog, published by the UK group Mencap. There are now 4 entries, the last one a very thoughtful and practical piece on friends, with a link to a book Annabel has written about Freddie to help friends and playmates understand him and to support him so that they can all enjoy playing together. She invites you to download and copy the idea if you like it.

We've added Freddie's blog to our Blogroll (in the right hand column) to make it easier to keep up with it.

And if you have teens or nearly teens, and haven't checked in to Living with Max (also in our Blogroll) lately, Sandy Lewis's latest musings will suggest that it can be distressingly like living with any teenager ..... And of course she's right - Max is a great actor - did you see him Trial and Retribution on ABC 1 a couple of weeks ago?

Reminder and more information: Dementia and disabilities seminar

Earlier post about this important event

If you are in Queensland, you might be interested in this opportunity to hear Diana Kerr

Disabilities and dementia: a workshop for people with disabilities or dementia, carers and healthcare professionals working in dementia care

Alzheimer’s Australia NSW will hold a full-day seminar on disabilities and dementia with renowned specialist, Diana Kerr - a leading figure in the UK in the area of dementia and learning disability, and a Research Fellow at the University of Edinburgh.

A number of local experts will join Diana Kerr and make the seminar an essential day for families and professionals interested in the field.

 Dr Seeta Durvasula from the Centre for Developmental Disability Studies, University of Sydney, will speak on distinguishing a deterioration in intellectual ability from dementia

 Christine Regan from NCOSS will describe a personal journey through the acute health system

 Marti Travers and Tammy Gaylard work at the Sylvanvale Foundation and provide an update of a clinical trial involving one of their clients

 Pam Rogers will share her palliative care experiences at Sunshine Homes

Date: Monday 6 April 2009

Venue: Parramatta Leagues Club

Address: 13 -15 O'Connell St Parramatta, NSW

Time: 8.30 for a 9:00am start

Cost: $85 for health professionals, or $55 for people with disability or dementia, carers or support organisations. Registration includes lunch.

Places are limited so please book early

For further information or to register, contact us now:

email education@alznsw.asn.au or phone Education Services at Alzheimer's Australia NSW on (02) 8875 4686

Thank goodness for one care worker's willingness to report another

This disturbing incident was reported in today's Sydney Morning Herald: Care worker slept in disabled woman's bed

A (paid) carer kicked a severely disabled woman out of bed and left her to walk around a group home unattended in the middle of the night while the carer changed into her own pyjamas, climbed into the woman's bed and went to sleep.

The residential carer was discovered in the morning, tucked up under a doona, by another support worker who was to replace her on the morning shift. The government-run home, in Sydney's north, houses between four and six disabled people at a time.

The NSW Department of Disability, Ageing and Home Care conducted an external investigation into the incident, which happened late last year, after the case worker who arrived for the morning shift found the disabled woman in the kitchen of the house.

Many readers will echo Andrew Constance's judgement:

The Opposition spokesman on disability, Andrew Constance, said it was probably an isolated incident, but the worker should not be allowed to return to overnight shifts.

Click here to read the full report, by the SMH's Alexandra Smith.

Sensory processing, behaviour and communication - professional development workshops

A series of workshops for professionals.

There may be a link between children’s behaviour, their ability to process sensory information and understand their world and communicate - resulting in them displaying a range of behaviors such as big responses (tantrums) to little things; becoming overly frustrated, stressed, upset or angry; physical responses in interactions with peers and carers and / or avoidance of certain situations and activities.

Karobran Playtherapy is offering a series of 3 workshops addressing these concerns:

1. Sensory Processing
Tues 24th March (RSVP by 19th March)

2. Sensory Seeking or seeking Attention?
Tues 31st March 2009 (RSVP by 24th March)

3. Total Communication
Wed 29th April 2009 (RSVP by 22nd April)

Facilitators: Karobran Playtherapy – Eurella Community Services

Location: 2 Eurella St, Burwood

Time for each event: 6pm – 9pm

R.S.V.P and further information: 9747 4810 (Tricia or Monica) Mob: 0419 448 322 (Tricia) Email: ceurella@optusnet.com.au

All participants will receive a Certificate of Participation.

Funded by the 2007 DADHC Enhancing Capacity Grants

Trisomy 21: discovery published 50 years ago

Today, 16th March 2009, is the 50th anniversary of the publication of Lejeune, Gautier and Turpin’s historic research paper, demonstrating the presence of an extra chromosome in each of the nine children studied. In 1959 the use of the term "Down syndrome" was still some years in the future, and the science of cytogenetics was in its infancy. The actual number of chromosomes present in the typical human cell had not been known for very long.

Almost simultaneously (but just a little later), a similar study was published by Patricia Jacobs and her Scottish colleagues.

It was regarded as a turning point in cytogenetics – the first human condition definitely attributable to aneuploidy (an unusual number of chromosomes).

...... almost a century elapsed between the clinical description of DS and its association with trisomy 21. When Jerome Lejeune associated DS with trisomy 21 in 1959, human cytogenetics was still maturing as a science; thus, Lejeune's discovery represents a landmark in the field.

O'Connor, C. Chromosomal abnormalities: Aneuploidies. Nature Education 1(1), (2008)

Trisomy 21 was the first human condition proven to be caused be aneuploidy (an unusual number of chromosomes), and discoveries about other aneuploidies follows quickly.

This key discovery is important for people with Down syndrome, but has had great benefits for others as well:

Recognition of Trisomy 21 has allowed scientists to look for causes of individual problems – what is genetic in DS, what is not, how intervention might bring benefits to either genetic or non-genetic traits.

Elucidation of other conditions for which genes occur on 21st chromosome has helped develop understanding of Alzheimers disease and leukaemia, for example.
People with DS are known to be at much lower risk of solid tumours than most of us – working out what is protective about chromosome 21 is helping to develop an understanding and therapies for solid tumour cancers.

Prof Jerome Lejeune continued to work in the field of cytogenetics, to great acclaim, until his death in 1994. He expressed great disappointment that his discovery had been used to identify Down syndrome prenatally for the purpose of terminating pregnancies. The search for the cause of Trisomy 21 continues, as does work to ameliorate harmful effects.

World Down Syndrome Day, celebrated internationally on 21st March, will this year focus on the anniversary of Lejuene's discovery.

Cumberland Retreat Open Day: Friday 20 March 2009

Where: The Cumberland Retreat

9 Tollgate Crescent

WINDSOR NSW 2756

When: Friday 20 March 2009, 9am—1pm

Please RSVP by Wednesday 18 March by contacting Stephanie on 9846 1517 or stephaniey@cumbind.com.au

Bring your colleagues and clients and come for a tour of the Cumberland Retreat and enjoy some light refreshments.

Click here for the flyer.

DS NSW professional development seminar: Dubbo

Update on Down syndrome
- a professional development seminar for adult disability services workers

Health and communication are two of the major issues impacting on the quality of life that people with Down syndrome can enjoy.

This seminar will be relevant to professionals working to support people with Down syndrome in residential, respite, recreation, and employment services, and to anyone who works closely with people with Down syndrome, wishing to update their knowledge.

10.00 am - 3.00 pm
Wednesday 8th April, 2009
Dubbo RSL Club
Dubbo, NSW

Cost per person: $132 - non-members; $99 – DS NSW members

Click here for a flier and registration form

All enquiries: Siena, ph 02 9683 4333 or carereducation@dsansw.org.au

Smile for life: training on oral care

Training about oral care for people with special needs designed for care-givers of people with intellectual disabilities (funded by Sydney West Area Health Service and NSW Health)

• What is it?
A half day inservice with a basic introduction to oral diseases, oral care (Special Needs Dentist) & diet (Dietitian), including a hands-on workshop.

• Where is it?
Westmead Hospital, Education Block.

• When is it?
Every 4th Thursday, 0900 -1230 hrs.
(23RD April; 28th May; 25th June)

• How much is it?
Free! (morning tea included)

• Would you like to book?
Contact:
Myrna Barcelon (02) 9845 5524 or Siva Premkumar (02) 9845 7019
Emails:
myrna_barcelon@wsahs.nsw.gov.au sivagami_premkumar@wsahs.nsw.gov.au

Fax: (02) 9845 5740

*Certificates of Attendance will be provided.


Click here to download the official brochure.

Danny Rumsey: Today Show (Ch. 9)

Did you see 19 yr old Daniel Rumsey's recent international swimming successes acknowledged on the Today Show (Channel 9) this morning? If not, you can see the video on the Today Show web page, here.

As the reporter said, Danny has been carving up the water for some years now. Here he is as a 12 year old, starting to make his mark on swimming:

And here is his medal haul from the 4th International Down Syndrome Swimming Championships in Portugal in December (where he captained Team Australia):

Daniel currently holds 13 World Records. He lives in the NSW Southern Highlands, and trains at Picton.

Previous posts on the 4th International Down Syndrome Swimming Championships - click here.

Library Thursdays: Resources for Making Visuals

Visuals play an important role in helping people with Down syndrome understand things more easily, prompt themselves and live easier, more independent lives.
In our library and on the web there are a few good resources for obtaining visuals or making your own.

Teaching by Design uses the computer and home made craft items to create visuals and make school work more visual. A CD-ROM template is included. Visual Strategies for Improving Communication: practical solutions for schools and home is a good source of practical ideas. Making Visual Supports Work at Home and in the Community (a simple book created for people with autism, but it works well for people with Down syndrome as well.)

A great website with free resources is: Visual Aids for Learning These visuals were created by Jenine and Wayne Addison whose son has Down syndrome and are excellent. They have kindly made them available for everyone and can be used for school and home and for various age group's need.

Disability Solutions also ran a couple of articles about using visuals in Issue 4 and 5 of Vol 5 by Patti McVay. Do2Learn and SET BC are other websites with useful visuals.

Let us know if you know of another great site for visuals. If you'd like to borrow any of the books on making and using visuals, just let us know.

Information event on sleep disorders in children with additional needs

This event is particularly relevant for parents of children with Down syndrome, who experience sleep disorders at a significantly higher rate than other children - it is an opportunity to hear from one of our leading experts in the field.

Waverley Council presents a round-table discussion and presentation on sleep disorders and their impact on behaviour and learning in children with special needs.

6.30pm–8.30pm

Tuesday, 21 April 2009

Free (spaces are limited)
Waverley Childcare Centre, Clementson Park,
Newland Street, Bondi Junction

Childcare and light refreshments will be provided

The session will be facilitated by Dr Dimitrios (Jim) Papadopoulas, whose qualifications and experience include

• FRACP in General Paediatrics
• Completed sub-specialty training in Paediatric Sleep Medicine
• In 2003 established Australia’s first multi-disciplinary Sleep Clinic specifically for developmentally delayed children (Children’s Sleep Medicine Service)
• In 2004 established the only private hospital Paediatric Sleep Unit in NSW
  Currently directs the Paediatric Sleep Disorders Unit at St George Private Hospital

Learn more about sleep disorders:

• Sleep problems are common in children of all ages.
• Disordered sleep affects mood, behaviour and cognition and can adversely impact on the whole family.
• Childhood sleep disorders are relatively easy to diagnose and treat, leading to measurable social,
  behavioural and neuro-cognitive benefits for children and their families.
• Brief case presentations and digital sleep study data will be used to illustrate sleep disorders and help explain polysomnography (sleep studies).

RSVP by 17 April 2009: Ph. Seak on 9386 7938

Click here for a flier

In Control Australia website launched

In Control Australia is a new movement of individuals, families, service providers and others who aim to change the social support system to one where there is self-directed funding and choice and control for individuals needing support in their lives.

See the new interactive In Control Australia website now at www.in-control.org.au.

Features include:

• Disability News and In Control News;
• Details of coming events and speakers on self-directed funding and person-centred tools;
• Forums for discussion;
• Links to other websites with research, information, and tools on self-directed funding.

Register on the site to sign up for premium content, including:

• A document library;
• Publications and submissions by In Control Australia;
• Presentations you can download about In Control Australia and self-directed funding.

The In Control Australia website is a work-in-progress. You are invited to send your feedback about the site and what you’d like to see there. Also send any relevant documents or links that you think could be put on the site.

Contact Name: Samantha Jenkinson
Contact Phone: 0412 887 674
Contact Email: enquiries@in-control.org.au

SCOPE: interview with ABC radio (Melbourne)

SCOPE is a major disability services provider in Victoria, supporting many people with complex disabilities and communication needs.


Diana Heggie, SCOPE's CEO, was interviewed for ABC radio’s Conversation Hour with Beverley O’Connor on Tuesday, January 20.

Click here (takes a little while to download) to listen to the wide ranging interview, covering the International Convention on People with Disabilities; self-directed funding; impact of the economic crisis; accessibility of community facilities; some aspects of inclusive practices.

A new family blog

The website of UK peak body Mencap includes a collection of blogs written by family members of people with a range of learning disabilities (the term used in the UK for which we in Australia use intellectual disability).

Click here to read Annabel's blog about her 10 year old son Freddie, who has Down syndrome. It's very new - just one entry so far, but there will be more to look forward to.

Down Syndrome and Alzheimer's disease: a family's experience

No-one wants to contemplate the possibility that their son or daughter might develop Alzheimer's disease at an early age (or at any age), but for some families of people with Down syndrome that is, or will be a reality. Rick Dean deals with the Stevens family's experience empathically, by looking at the rapid development of AD in the context of their 44 yr old son Jim's life as a whole.

For the Good Times, Topeka Capital Journal, 8th March 2009, by Rick Dean

Click here for other posts related to resources on Down syndrome and dementia, and a seminar with Diana Kerr in Sydney next month (6th April, 2009)

More on New Directions in Day Programs (DADHC)

Further to the earlier post on new day programs, an update received today: DADHC is offering the new programs more widely than the Northern Metropolitan Region - click here for information on New Directions in Day Programs across NSW.

Northern Metropolitan region: places available in new adult programs

Please note that the closing date for Expressions of Interest for these programs is Friday 13th March - this is very short notice. If you care for, or know someone with a disability who might benefit, please pass the information on to them urgently:


NSW Dept Ageing, Disability and Home Care (DADHC) has funded 44 placements in two new day programs for the Metro North Region in 2008/09. These are part of NSW Government’s ten year ‘Stronger Together’ plan. The new programs are Life Choices, offering 30 places and Active Ageing offering 14 places.


Of these 44 funded places, 8 of the Life Choices and 4 of the Active Ageing placements will be Disability Assistance Packages (DAP). DAP funding targets individuals living in the community with parents/carers over the age of 60 (or 45 for Aboriginal carers).

These two programs have a greater emphasis on user choice, age appropriate service and planning for changing needs as people age. Funding will be provided for a minimum 18 hours a week. The level of funding for each participant will depend on the level of support they require eg. moderate to very high (exceptional).


Life Choices is aimed at 25 to 54 year olds. The Program aims to:

• maintain participants’ capacity to participate in community life;


• enhance participants’ independence;


• facilitate and promote opportunities and pathways to ensure participants benefit from ongoing learning and personal development;


• support participants to develop and sustain social interactions and participate in the community; and


• provide a respite effect for their families and carers (DAP).

Active Ageing for people aged 55 to 64 or those with early onset ageing. The Program aims to:

• promote active and healthy older life;


• maintain participants’ capacity to participate in community life and remain independent;


• promote opportunities for participation in meaningful activities and ongoing personal development;


• support participants to develop and sustain social networks and interactions;


• facilitate pathways and future planning for older life; and


• provide a respite effect for families and carers (DAP).

For further information or referrals contact Brian Bernard on 9450 7957 or contact brian.bernard@dadhc.nsw.gov.au or samantha.livingston@dadhc.nsw.gov.au

Click here for more detailed information and here for an Expression of Interest/Application form. Completed forms need to be returned to

DADHC, Northern Metro Office, PO Box 1746, Hornsby Westfield NSW 1635

by 13th March 2009.

Another moving piece on Ivan Cameron's short life

UK Times journalist, India Knight, has also written a thoughtful reflection on Ivan Cameron's short life, David Cameron's open love for his son, published on 1st March, nicely complementing Dominic Lawson's thoughts.

Lessons from Cathal

Over at A Journey into Grandmotherhood, the always wise Nan P has been a given a communication lesson by the utterly charming Cathal - a nice anecdote and lesson for a quiet Sunday afternoon. Her latest photos are here, where he teaches her not to worry too much.

Comedy is King: an evening with Brian Doyle and friends

Save this date:

Comedy is King

Tuesday 7th July 2009

The Westin Sydney,

No. 1 Martin Place, Sydney

On behalf of Brian Doyle, join us for an evening with Brian Doyle and friends in aid of Down Syndrome NSW.

This will be a highly entertaining evening, featuring high profile comedians including Brian Doyle, and performances from some of Australia‘s premier artists. Stay tuned for more information to come.

Tickets: $250 per person. Corporate and VIP packages available.

You can book now on 1800 804 275

melanie@internationalevents.com.au

Check here for details.