19th September event in Albury postponed.

We have advertised this event for some weeks:

"Making friends: Strategies for supporting friendship development"
A workshop for parents of a pre teen or young adult with Down syndrome, scheduled to be held on

Saturday 19th, September 2009 in Albury

Unfortunately this event has been cancelled. However, it is a postponement - we will visit the Albury region later during the 2009 -2010 year, and we will be in touch with members in the local area to canvass what you would like us to address.

Please do not hesitate to call or email us if you have a more urgent need for information or support.

All enquiries to Siena O’Brien at carereducation@dsansw.org.au or phone 9841 4411

PWD E-Bulletin on Individualised Funding and Self Determination ....

Issue 56 of PWD's E-Bulletin (published by peak organisation, People With Disability) is largely dedicated to Individualised Funding and Self Determination, and is available online now.

DS NSW new office - the move is done ....

The relocation of our office to Harris Park has gone very smoothly, with excellent organisation by our Administration Manager, Angela Adams, a lot of work from staff, a great removalist and some wonderful volunteers from Bunnings Auburnand Lidcombe and from Bunnings Head Office in Rosehill.

Rest break in between loads ....

The volunteers from Bunnings Head Office are administrators - they had the library collection unpacked, back on the shelves, in the correct categories and alphabetised in less time than it took the removalists to reassemble the shelving.









Not only did the Bunnings volunteers help us to unpack, but they brought gifts, including an outdoor dining table and chairs so that both staff and visitors can enjoy the back garden - and then they even put it together for us. Thanks guys - we really appreciate your support and generosity.



We are planning to man some Bunnings famous Saturday fundraising BBQs at the Auburn and Lidcombe stores when they have a vacancy during 2010 - let us know if you would be interested in helping out.




Our new phone system allows each staff member to have a unique direct line and voicemail box, in addition to the general office number - 02 9841 4444, so you will be able to contact us more easily.



Visitors are welcome - see the right hand column for details of where and how to find us, and give usa call to let us know you are coming.

Vision research

The latest collaborative study between optometry and vision researchers at the University of Ulster and the University of Cardiff confirms a high incidence of anatomical differences in the eyes of people with Down syndrome. "The report calls for further research into the connection between the ocular structures of the eye in Down's syndrome and functional vision, " according to an article in the magazine Optician On-Line

Journal reference:

Little, Julie-Anne; Woodhouse, J Margaret; Saunders, Kathryn J, Corneal Power and Astigmatism in Down Syndrome. Optometry and Vision Science: June 2009 - Volume 86 - Issue 6 - pp 748-754

Co-author Dr Margaret Woodhouse is the Director of Innovation and Engagement at the University of Cardiff's School of Optometry and Vision Sciences, and head of the Down's Syndrome Vision Research Unit. The research unit has been studying visual development in children with Down’s syndrome since 1992. You will find a great deal of useful information on their web pages, including information sheets for parents, teachers and professionals, about "testing and managing eye problems".

My sister, my mate - the story behind AfterLife

This blog post, My sister, my mate, the very first in the blog, tells the story behind the film AfterLife, made in Scotland in 2003. DS NSW members can borrow a copy from the DS NSW library (see Kathi's recent post about films in our collection).

Accreditation and quality

Letter to the Editor, Sydney Morning Herald, Monday 31st August 2009, in response to this news report on Sunday:

There is no accreditation process for the provision of services to people with disabilities (''Carer kissed disabled woman'', smh.com.au, August 30). Accreditation of services is mandated in policy areas for the vulnerable such as child care, aged care, health and education. Why not for services to people with disabilities?

In the mid-1970s and 1980s public exposure of abuse and neglect in institutional care of people with disabilities forced government to review its wilful blindness to the needs of these people. However, government always stops short in recognising people with disabilities as equals when it comes to providing quality care and support.

Lack of accreditation gives opportunity to some questionable practices and service providers which, apart from tainting those who deliver excellent standards of care, is redolent of an institutional-management mindset, and continues to excuse a lesser standard of care and quality of life for people with disabilities.

Mary Lou Carter, Carers Alliance, Drummoyne

NDS NSW launches new Disability Safe website

NDS (National Disability Services) recently launched the new website for its Disability Safe project, an initiative funded by the Department of Ageing, Disability and Home Care (DADHC).

Developed specifically for the disability services sector, http://www.disabilitysafe.org.au/ provides valuable information on occupational health and safety, workers compensation and injury management, as well as training and development opportunities. The issue of protecting and maintaining the health, wellbeing and safety of workers and service users in the disability sector continues to be of critical importance.

The diverse and unique nature of supporting people with disability across a variety of settings poses a number of challenges. Contemporary in its design, specific features of the new website that may alleviate some of the pressure on organisations include:

• sample policies and procedures;
• results of state-wide quarterly benchmarking which quantifies by organisation and by service type the number and types of workplace injuries providing a valuable self assessment measure;
• online discussion forums to raise specific issues and request customised support.

Established in April 2007 to recognise and support the unique challenges impacting on the disability services sector, the Disability Safe project is underpinned by three main objectives:

• Enhancing the quality of services by embedding a culture of safe work practices;
• Developing a consistent approach to risk management;
• Driving cost efficiencies through the development and implementation of sophisticated workers compensation premium, claims and injury management.

The new Disability Safe website aligns these objectives with practical resources that support service delivery and enhance the capacity of the sector. NDS encourages all organisations to avail themselves to this valuable resource and utilise its user-friendly functionalities. Designed as an evolving and growing resource, NDS invites organisations to provide relevant content for the website to facilitate the sharing of best practice within the sector.

For further information regarding the Disability Safe project and website or to make suggestions for content, please contact Sue Smith, Disability Safe Project Manager on 02 9256 3121 or susan.smith@nds.org.au

DS NSW Update - September 2009

This month's Update is now available online. It has been circulated to email subscribers, and the print edition will be mailed today, with the Spring 2009 issue of the Down Syndrome NSW quarterly Newsletter.

Accessible Arts September 2009 Newsletter is also now available online.

2 - 4 yr olds invited to participate in early reading / numeracy research at Macquarie university

Dr Kathy Cologon, a lecturer and researcher at the Institute of Early Childhood, Macquarie University, is currently looking for families who might be interested in participating in either an early reading or an early numeracy intervention for young children who have Down syndrome and their parents.

The interventions will build on previous research into effective reading and numeracy interventions with children who have Down syndrome. However, in this study, Kathy is seeking parents who would be interested in undertaking training in order to develop skills and understanding to enable them to implement early intervention with their children. The children need to be aged between two and a half and four years of age. If you choose to participate, you and your child will be randomly assigned to either the early numeracy or the early literacy intervention.

Parents will be provided with relevant materials, training and support throughout the intervention. The research will also involve assessments to find out the impact of the intervention on the children involved. The training and assessments will be conducted in English.

The intervention will involve four weekly training sessions, followed by four fortnightly training sessions at Macquarie University, as well as a brief parent interview and four reading, maths and language assessments of approximately 3 hours each for each child.

If you have a child with Down syndrome aged between two and a half and four years of age and you and your child might be interested in participating in this research, please contact Kathy on 9850 9864 or via email at Kathy.Cologon@mq.edu.au by early September.

Family Advocacy Workshop: After School - then what?

A workshop about navigating the post school system for families of school students in years 9, 10, 11 or 12

The day is about preparation and planning for when a student with disability, who will need ongoing support, leaves school.

The focus of the day will be on the system of funding and support. It will cover information about Commonwealth and State Government responsibilities as well as those of non government service providers who are approved to support school leavers.

Topics covered will include: achieving a positive future for young people leaving school what other young people have achieved with their funding levels of funding and how it is allocated the different forms of support arrangements that are available how to make informed choices about the future government guidelines and how they affect school leavers.

• ORANGE—Tuesday 8 September
• DUBBO—Wednesday 9 September
• ALBURY—Tuesday 15 September
• WAGGA—Wednesday 16 September

The presenters at this workshop are themselves parents, family members and allies of people with developmental disability.

This is an important workshop if a person with developmental disability in your family:
is leaving school (year 12) in 2009 or is in years 9, 10 or 11 and you are planning for life after year 12.

Cost to attend: $10.00 per person (GST inclusive and covers morning tea, lunch and materials)

Phone for more information, venue details and to register call Family Advocacy on 1800 620 588

Liberal forum on the education of students with disabilities

The Liberal Party held a "major stakeholder forum" on the education of students with disabilities last week in Melbourne, and has issued these statements:

Leader of the Opposition Opening Remarks at the Major Stakeholder Forum - Equal Access to Education

Taking students with disabilities out of the too hard basket - Joint Release from the Hon Christopher Pyne MP Shadow Minister for Education, the Hon Malcolm Turnbull MP Leader of the Opposition and Senator Mitch Fifield Shadow Parliamentary Secretary for Disabilities, Carers and the Voluntary Sector

Living life to the Max

The Mail.Online has recently published an interview with Sandy Lewis, mother of Max (16), and author of "Living with Max". She gives some excellent advice for new families.

A link to Sandy's blog is listed in our Blogroll - scroll down the right hand column of this page.

Her book "Living with max" is available for loan to DS NSW members from our library.

Care worker's rights vs clients with disabilities' rights

A decision by a public service tribunal that seems to put the rights of a worker above the needs and rights of people with intellectual disabilities and the reaction of the Director-General of DADHC's response featured on the front page of this morning's Sun-Herald:

The head of the Department of Ageing, Disability and Home Care, Jim Moore, said his duty of care to clients gave him no option but to defy an order from the little-known Government and Related Employees Tribunal last week directing him to reinstate the residential support worker within a fortnight. ''We are incredibly concerned about the tribunal's decision,'' Mr Moore said.

Click here to read the full news report.

Counselling Support Groups: Chatswood, October - November

..... for parents of children with special needs

Carers NSW fund these groups "to enable parents to meet and tell their story, give and gain support from other families and carers.The focus is on how to take better care of ourselves and not ‘burnout’. The groups deal with issues of family and relationships, the grief process and how to cope on bad days. They can help with the feelings of loss, isolation,exhaustion and the impossible role of parenting different children."

The groups run for 2 hours, 8 consecutive weeks and are run by a counsellor who is a mum of a child with Autism.

Venue: Lizard Centre (conference Rm1)
126 Greville Street
Chatswood NSW 2067

Commencing: Monday 19th October 2009

Fees for groups are based on need, not ability to pay. Phone to discuss your circumstances.

For further information and to secure your place contact Justine 0414 237 383
justinew@three.com.au
www.counsellingforall.com

Library Thursdays: World Down Syndrome Congress

My mind is still reeling from all that I heard and saw at the conference in Dublin this week. It was wonderful to be around so many different people in the Down syndrome community. There were parents, professionals, expert researchers, children and adults with Down syndrome. There were displays as well as talks and I met people from all over the world but always I felt a huge sense of community. I have a picked up some new resources for the library (some Dave Hingsburger publications, an Italian DVD, a children's book amongst a couple others) but also was able to hear talks by many of the authors of resources already in the library. I will write in more detail over the next few weeks about what I learned from the Congress, but the highlights from the talks have been for me: 

Hearing about the post-secondary education programs going in the US and Ireland. The tertiary program at Trinity College in Dublin is particularly exciting and impressive.

Listening to Dave Hingsburger in person. He makes me laugh, cry and challenge my actions.

Hearing Dennis McGuire (one of the authors of Mental Wellness in adults with Down syndrome) speak. His knowledge, love and respect of people with Down syndrome really comes through.

David Patterson speaking on the continuing study of the genetics of Down syndrome was interesting.

The gains made in Russia with the acceptance of children with Dow

n syndrome was great to hear.

The feeling, motivation and belief in social inclusion by many speakers.

Hearing the young adults with Down syndrome speak.

There are really just too many highlights for me to go on with. I did appreciate listening to the whole range of issues concerning Down syndrome all packed into 3 days. It helps bring in all into context.

I look forward to coming back to Australia and unpacking the library! But also unpacking my thoughts about all this.

Article from Irish Times about Congress

United by Music Website

(United by Music is pictured at right. They performed at the Congress with guest Sujeet Desai)

More on Health for All, Wollongong - October

The Disability Trust has issued an update on its Health for All conference to be held in Wollongong on 1st October 2009:

We are delighted to have Dr Helen Beange to open the conference. Dr Helen Beange is internationally renowned for her contribution to understanding the health needs of people with a developmental disability. Her vision, clarity of thought, diligent work and perseverance is inspirational.

Key Note Speakers are:-
• Professor Lyn Lee – Rehabilitation & Developmental Disability expert.
• Dr Meg Smith – Expert in Mental health Issues.
• Trish McClure – parent of a child with profound medical frailty & advocate.
• Jim Simpson – Senior Legal Advocate for NSW Council for Intellectual Disabilities.

Other Presenters/ Presentations include:-
• Professor Trevor Parmenter, prominent educator in Developmental Disability Services.
• Dr Irwin Pakula, Psychiatrist who has worked extensively with people with disabilities.
• Healthy Life Outcomes.
• Clinical Services in Accommodation.
• Carer Outcomes.
• Management of Hospitalisation of Non Verbal Patients.
• Workplace Health.
• Mental Health Patient Abuse in Forensic Hospitals.

More presenters/ presentations will be announced shortly and a full program will be made available prior to the conference.

The Health For All conference is suitable for all people who work in Disability Services and Health Care, People with Disabilities and Carers.

Don’t miss out!!!!

Click here for an earlier post with links to download the flyer and registration form for this event.

Camp Bluegum for Young Carers 8-12 years

Siblings inevitably take on some caring roles when they grow up with a brother or sister who has a disability. Young Carer events, like Camp Bluegum, are an opportunity for them to spend time with other siblings, acknowledging and valuing their caring roles, and maybe making connections with them

Saturday, 10 October 2009 to Wednesday, 14 October 2009

Springwood, Blue Mountains

Campers will have fun with lots of activities, make friends and have a break. Register by 4 September 2009.Camp Bluegum is for young carers of 8-12 years of age caring for a family member with a long term illness, disability, mental illness, drug or alcohol dependency.

Camp Bluegum is FREE. Please apply by 4 September 2009.

Note: Volunteer Camp leaders and qualified nurses are also required.

Contact:
For information or a registration form contact Young Carer Team, Carers NSW, on 1800 242 636 or email yc@carersnsw.asn.au. You can also download a registration form from the Young Carers website.

Recent media releases from the Minister for Disability Services

Major expansion for Teen Time program 16/08/2009)
A program that gives parents of teenagers with an intellectual disability more respite so they can pursue jobs and study is to be expanded across New South Wales. Minister for Disability Services Paul Lynch said the $2.578 million Teen Time – After School and Vacation Support for Working Parents was piloted in Sydney’s north in 2007-2008. Mr Lynch said the pilot program proved so successful that the Government was providing extra money to provide a total of 460 places through 27 services around the State. Click here for the full text of this media release.

Aboriginal Case Managers for people with a disability (14/08/2009)
The NSW Government has appointed several Aboriginal people as case managers to work with people with a disability in southern Sydney.

Minister for Disability Services Paul Lynch said at least six Aboriginal specific positions would enable the Department of Ageing, Disability and Home Care (DADHC) to develop stronger ties with the Aboriginal community in the region. Click here for the full text of this media release.

Challenge helps people with disabilities to live independently in Tamworth (20/08/2009)
Minister for Disability Services Paul Lynch today officially opened new units for 17 people with a disability in Tamworth.

The 15 units – operated by Challenge Disability Services – support ageing people with a disability and were designed to encourage them to live independently in the community. Click here for the full text of this media release.

DET proposed changes to support for students in mainstream enrolments

The provision of educational support in NSW State schools, for some students enrolled in mainstream classes, is undergoing change that is the subject of some controversy.

The Department of Education and Training and the NSW Teachers Federation are at odds over the direction and pace of current proposals. Many parents are left wondering exactly what changes are proposed, and how their child will be affected.

The Department of Education and Training has recently posted two documents addressing the proposed changes on its website, linked from the top right corner of the Disability Programs page, under the heading Proposed School Learning Support Program:

• Consultation Presentation (MS PPT 27MB) - note the large file size which might make it difficult for some to download or open. (If you have difficulty with it and want the information in an alternative format, please contact us at info@dsansw.org.au)


• Questions & Answers (Ms WORD 64kB) - a shorter, text-only summary of the major issues

Some students' (but not all) needs are currently met by the Learning Assistance Program. The LAP will be absorbed into the School Learning Support Program if it is fully implemented.

This page appears to be the most recent update of the NSW Teachers Federation position. Previously, the Federation has posted a number of documents on its website addressing its concerns about current provision for students with additional educational needs (enrolled in all available settings), its demand "that the existing LAP [Learning Assistance Program] allocations and all existing programs be maintained for a further 12 months until wide consultation, evaluation of programs and a review are conducted", its concern for the more than 1800 Support Teacher (Learning Assistance) positions, and reporting on its campaign on special education leading up to the next State election.

The new DET documents address the concerns about the 1800 STLA positions - but the Federation does not appear to be entirely satisfied as yet.

The Teachers Federation acknowledges improvements that have been achieved in recent years, and not every concern is relevant to students with Down syndrome, but the debate will be of interest to many parents whose children are enrolled in both special education and mainstream settings.

Of particular concern to us, is how or whether the proposed changes will deliver adequate support to students with Down syndrome who are assessed by the DET as having a mild intellectual disability, and we are seeking clarification from DET.

We welcome your input if your school-aged child with Down syndrome has been assessed as having a mild intellectual disability, whether you are confident that they are currently being adequately supported or not - please contact us via info@dsansw.org.au

A little weekend blog surfing

Frank Buckley, CEO of Down Syndrome Education International challenges assumptions about prenatal testing.

This report provides an update on the current status of the US company Sequenom's non-invasive prenatal test.

Patricia Bauer's Disability News commentary covered tributes to Eunice Kennedy Shriver

Jennifer Gronenberg continues to encourage parents of young children by writing about her young family.

Sandy Lewis writes about living with teenaged Max

Dave Hingsburger has submitted to having "proper"professional photograph taken, which he calls Portrait of the Activist as an Old Man