Address details


Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444


Tuesday, 24 August 2010

Team Australia for Taiwan 2010

Congratulations, and our very best wishes to all the swimmers selected to represent Australia at the 5th Down Syndrome World Swimming Championships in Taiwan, 1st - 8th October 2010.
The team was presented with their uniforms in Queensland at the weekend.
NSW representatives are Lucy Dumitrescu, Daniel Rumsey and Brendan Foley.  We will, of course, be especially cheering for them.
Just over month to go until the Championships begin in Taipei on 1st October - follow their progress and send your good wishes through the Down Syndrome Down Under Swimming Organisation
The World Championships are run under the auspices of the Down Syndrome International Swimming Organisation.

Monday, 23 August 2010

Unbreakable bond: 2 friends share life, look at death with grace

This Boston Herald article about a remarkable friendship should probably come with a tissue warning ....

Alison's 80th

The Tenterfield Star has kindly given us permission to share the photo of Alison Durham, with Jennifer Rich, Recreation and Activities Officer at Roseneath in Glenn Innes, NSW.  It was taken by Ben Lonergan from the Glenn Innes Examiner, on the occasion of Alison's  recent 80th birthday.

Click here to see our previous post about Alison Durham

ABC Disability Portal: somewhere to share the experience of disability

Here's an interesting proposal that has nothing to do with the election:

The ABC is building a website for people whose lives are touched by disability, a place for their issues and stories. It will be provocative, celebratory, challenging and supportive. Everyday will feature news and views from those who meet disability head-on in their lives, their work, their community and family. We expect serious insights and sharp humour - a site with plenty of attitude. We will also be paying close attention to website ‘accessibility’.

Visit the website to see how you can contribute by providing content, or to nominate yourself or someone else to volunteer for the planned advisory committee.

Friday, 20 August 2010

Final election wrap - disability policies

Well, with less than a day to go until the election, time for a final wrap up of the disability policies which have been announced during the campaign.

In a heartening sign, disability issues have featured more prominently in this campaign than perhaps any other – not a lot, but more than usual.

Although the mainstream media have not given them much prominence, both Julia Gillard and Tony Abbott have personally announced disability policies, rather than just leaving them to their disability spokespersons as usually occurred previously. Both leaders have been questioned directly by carers and parents of children with disabilities at various public forums. On the ABC’s Q & A program, Julia Gillard was directly questioned by Jackie Beard, a parent of a young girl with Down syndrome (view here).

In the Senate, the Carers Alliance is running candidates in all states, and is doing a great job highlighting disability issues and pushing for disability policy to become mainstream.

Down Syndrome NSW had been working with other state Associations (collectively under the banner ‘Down Syndrome Australia’) in the lead up to the election to advocate on policy. Down Syndrome Victoria representatives met with Bill Shorten and Departmental staff earlier in the year, and Mr Shorten offered to host a National Down Syndrome ‘round table’ meeting. A national teleconference between state Down Syndrome Associations was held in the lead up to the election, at which we determined a number of priority issues for the federal government to take action on. The priorities we listed included a ‘Helping children with Down syndrome’ package based on the ‘autism’ package, action on ‘wellness’ and positive ageing, breaking barriers to employment, and expansion of accommodation options and support.

Below is a summary of major party policies which address, or partly address some of these priorities which Down Syndrome NSW and other states had identified before the campaign. You can click on the underlined words below to go to external sites providing much more detail on the various measures.
_________________________________
Early Intervention and School Support

Labor: Julia Gillard has announced its policy A Better Start for Children with Disabilities which is an extension of the comprehensive Helping Children with Autism Package introduced by the Labor Government in 2007, to ensure children with Down syndrome, cerebral palsy, fragile x, vision or hearing impairment receive similar assistance to those with autism.

‘A Better Start’ provides $30 million a year over 4 years:
• Each child with Down syndrome under 6 will be eligible for $12,000 worth of early intervention services (physio, occ. therapy, speech therapy, etc).
• Children with Down syndrome under 15 will be able to receive new medicare rebates for diagnostic and allied health services, based on each child’s ‘treatment and management plan’

The policy follows discussions between the Government and a number of disability groups and parents, including Down Syndrome Victoria. Down Syndrome Victoria representatives were invited to the policy launch by Julia Gillard in Melbourne.

Bill Shorten’s office and the Department have confirmed a national ‘Down syndrome round table’ will be held after the election involving Down Syndrome Australia representatives, which will allow for further input in to the detail of the policy.

Another important element of the ‘Helping Children with Autism’ package is funding for teacher training and parent education /support. Details on these elements are not provided yet in the ‘Better Start’ program, and Down Syndrome NSW will push for funds for school teacher training to be included.

Listen to a story on the disability policy launch here and another story featuring an interview with Down Syndrome Victoria CEO, Cath McAlpine on ABC ‘PM’ program here (click ‘play’ to listen)

Coalition: The Coalition has not announced an early intervention policy during the campaign, and has not commented on Labor’s policy at this stage, beyond saying they will “examine it”.

Regardless of the election result, Down Syndrome NSW will continue to push for the Coalition to support a package for children with Down syndrome, based on the ‘Helping Children with Autism’ package, which includes early intervention funding per child, medicare rebates for allied health treatments and funding for teacher training and family support.

The Coalition has announced an ‘Education Card’ policy which will provide a benefit of up to $20,000 for the 6000 most ‘severely’ disabled students.

Although it is likely most children with Down syndrome will not be eligible, there is potential for the program to be rolled out further to provide support for children with mild to moderate disabilities. The program has a number of positive elements, such as the fact that the funding is ‘portable’ and goes with the student if they move schools.

The Coalition has also committed to increase and expand the education tax rebate to include special education costs for children with disabilities.
__________________________
Accommodation

Labor: has released a supported accommodation policy which provides $60 million to community organisations to provide an extra 150 places in supported accommodation. . The policy encourages flexible, innovative, local solutions to meet accommodation needs.

Labor states “ Community organisations are uniquely placed to develop accommodation and respite options that capitalise on local support and resources, and meet the needs of people with disability and their carers in an inventive way.

Projects could include a modern renovation of an existing home so it can be used for supported accommodation, pooled resources to build a contemporary facility close to local community and health services to provide overnight respite..”

Coalition: A Coalition Government will establish a Disability and Carer Ombudsman who will conduct a “comprehensive audit of Australia’s supported accommodation, identifying the gaps in both capital and recurrent funding.”

The Ombudsman’s findings will be considered by the Coalition Government, but no commitment to additional funding for accommodation has been made at this stage
_______________________________
National Disability Insurance Scheme

Labor: Following an idea proposed at the 2020 summit in 2008, Labor asked the Productivity Commission to conduct an inquiry into a national disability long-term care and support scheme, including consideration of a national disability insurance scheme (NDIS).

The Scheme has been described as being a bit like ‘medicare for disabilities’ providing comprehensive coverage (‘social insurance’) of treatment and care costs for people with disabilities regardless of how they were acquired - whether acquired at birth, from accident or misadventure.

Labor states “We need to consider the whole of a person’s life and adapt to their unique needs, no matter how they acquired their disability. People with disability and their family or carer should have choice, flexibility and control over the services and supports they require. We know this is what people with disability want, and it is in the nation’s long-term interest. 

A national disability insurance scheme would be a complex and transformative reform that requires detailed consideration.

The Productivity Commission inquiry will assess whether a national disability insurance scheme would be appropriate, practical and economically responsible in the Australian context.” 

Coalition: The Coalition has committed to “seriously examine the Productivity Commission recommendations in relation to a National Disability Insurance Scheme”.

“The Coalition acknowledges that better support for Australians with a disability is a high-priority issue and recognises that the disability sector and carers are united in their call for a solution to the unmet need for the long term care and support of Australians with a disability and those who care for them.

The current support system for Australians with a disability is a frayed patchwork that leaves many people without cover and adequate support. The Coalition recognises there is a great need for better assistance for people with disability who need long-term care and that many carers are no longer able to provide constant support.

The Coalition has undertaken to closely examine and consider the recommendations of the Productivity Commission inquiry into the long term care and support of Australians with disability.”
___________________________
All parties’ full responses to a call for a National Disability Insurance Sceme can be viewed here.

A number of other policies and measures have been announced by the major parties during the campaign: 
Labor has announced a draft 10 year National Disability Strategy which can be viewed here and the Coalition’s suite of measures which make up its Disabilities and Carers policy can be viewed here.

I have focused in this wrap on the major parties in recognition that either the Coalition or Labor will be forming a government after tomorrow’s election. I also draw your attention to the disability policy statement by the Greens (click here) and also, as mentioned above, to information on the Carers Alliance

Regardless of the result tomorrow, Down Syndrome NSW will continue to advocate for the needs and abilities of people with Down syndrome to be acknowledged and supported by Government, and continue to advocate for the priority issues identified by our members. As always, I welcome your views.

Happy voting!

Steve Clarke
Chief Executive Officer
Down Syndrome NSW
Tel 02 9841 4408
Email steve@dsansw.org.au

Alison Durham celebrates her 80th birthday

Ms Alison Durham turned 80 last week, and that's remarkable.  Happy birthday, Alison, and many congratulations.

This story in the Tenterfield Star tells why, and is accompanied by a fabulous photo.

Alison's birthday marks major milestone

CHRIS WALKER, Tenterfield Star, 18 Aug, 2010

FORMER Tenterfield resident Alison Durham celebrated her 80th birthday on Thursday, and is believed to be the oldest living person with Down syndrome in Australia.

Ms Durham grew up in Tenterfield and has outlived all her siblings. She moved from Tenterfield to Roseneath Nursing Home in Glen Innes early in 1976.

“She has been here for 34 years this year, and is a quiet lady, very gentle and very kind,” said Roseneath’s Recreation and Activities Officer Jennifer Rich.

“She has a set routine every day with each day’s activities.”

Down syndrome is a genetic condition that leads to delays in physical and intellectual development, and occurs in about one in every 800 live births.

When Ms Durham was born in 1930, the average life span for a person suffering Down syndrome was just nine years, putting into perspective the 80-year milestone.

Today, the average life expectancy for those suffering with Down syndrome has improved to the late 50s, but that remains more than 20 years less than the average life expectancy for the typical person.

It is possible Ms Durham is the second oldest surviving person with Down syndrome in the world. The 2009 edition of the Guinness Book of Records lists American Bert Holbrook as the record holder.

If Mr Holbrook is still alive today he will turn 82 this month.

Staff said Ms Durham loves a cup of tea and biscuits, and always hangs up her clothes before bed, ready for the next day.

Along with the nursing home staff, Ms Durham has been kept company by her community visitor Lyn Dwyer for a number of years.

Poignant photograph shortlisted

A poignant photograph of a young man looking on to others' lives was shortlisted for the  recent Moran Contemporary Photographic Prize. 

Click here to see the photograph and read the accompanying article from the Hornsby and Upper North Shore Advocate

Thursday, 19 August 2010

Library Thursdays: Worlds Apart and The Specials

In the library this week are 2 new DVDs. Worlds Apart: Together in adversity (by Tim Robinson, Light on a Hill) is a documentary contrasting the lives of two boys with disabilities. Josh, who is 9 years old, has Down syndrome and other health issues and lives in Toowoomba and Suphot is a 17 year old living a remote area of Thailand who has fairly severe physical disabilities.
The film looks at the boys' day to day lives, therapies they receive, and the support from their friends and families. Josh is homeschooled mostly for health reasons. His immunity was quite low and he was away more than he was at school when he wasn't homeschooled. Suphot attends the local high school and has friends that enjoy him, look out for him and help him. Josh and his mother are very involved in their church and the film looks at how he fits in. There are a few stereotypical comments from friends and supporters, but overall, it is a very good look at the lives of these boys..
It is an interesting film and points out the contrast in the lives for people with disabilities in these two countries. It would have been even more interesting if their disabilities had been similar, but it was still a good look at the issue of disability in Australia and Thailand.

The other DVD in this week is season one of The Specials, the internet series about a housed shared by five friends with intellectual disabilities (some with Down syndrome). The series won a Webby award. The DVD includes the 10 episodes in high quality video as opposed to the compressed version shown on the internet. It also includes housemate profiles as well as the ability to have subtitles. It is quite a
good series and worth watching in a this more convenient format.

Related links:

The Specials website which includes a preview of their upcoming documentary, plus interviews with the housemates and other information of interest.

If you'd like to borrow either of the DVDs or anything else from the library, just call or email.

Federal Election 2010: Coalition policy on people with disabilities and carers

The Coalition yesterday (18th August) released its PLAN FOR REAL ACTION ON DISABILITIES AND CARERS.

"Our plan for real action includes:

1. A commitment to seriously examine the Productivity Commission recommendations in relation to a National Disability Insurance Scheme

2. An investment of $314 million for an Education Card worth up to $20,000 to assist up to 6,000 Australian students with a disability

3. An increase in the Education Tax Rebate and an expansion of eligible expenses to include education costs for children with disabilities

4. The appointment of an independent Commonwealth Disability and Carer Ombudsman to give Australians with a disability and carers a real, independent voice within government

5. A comprehensive audit conducted by the new Disability and Carer Ombudsman of Australia’s supported accommodation

6. $2.2 million to establish a new school for blind and vision impaired students in Victoria and an assessment of the need for additional special schools across Australia that cater for students with particular disabilities

7. $1 million to provide digital playback devices and improved access to digital content in public libraries

8. $500,000 to fast-track technology to make cinemas more accessible

9. $1 million to promote voluntary guidelines for accessible housing for older Australians and Australians with a disability

10. A Disability Enterprises (ADE) Advocate

11. $3 million for a new Young Carer Scholarship Programme

12. Maintenance of income support for carers

Click here for  Senator Mitch Fifield's media release

Click here to download the policy document (2 Mb .pdf)

Wednesday, 18 August 2010

Buddies build a bridge to disabilities in school

Harmanjot Kaur is not sure what her best friend Bree Grisedale's intellectual disability is because ''frankly, it doesn't matter,'' she said.

They are among 150 sets of ''buddies'' who make up Best Buddies Australia, a not-for-profit organisation that pairs an intellectually disabled person with an able buddy to spend time together, whether playing video games or shopping.

Mark Trevaskis believes there are no organisations like his. He asked the NSW Department of Ageing, Disability and Home Care for $1 million this year to expand around the state but received $150,000, barely enough to continue operating .....

Read Rachel Olding's report from today's Sydney Morning Herald here.

Woman's Day - Carers Special

The current issue of Woman's Day magazine (23rd August 2010) includes a Carers Special section, edited by Alan Jones.  It features input from several family carers, some of whom are celebrities.  Carer concerns are covered, as well as personal stories.  Down Syndrome NSW Patron, Craig Wing talks about his sister Kirsty, who has Down syndrome:
He's an international rugby sensation, but Craig Wing believes his 20-year-old sister, Kirsty, who was born with Down Syndrome, is the true star of his family.

"She loves being the centre of attention," the former Australian rugby league representative says. "She's definitely not delicate. She's happy, bubbly and you can never get the better of her."

Craig says caring for Kirsty over the years has been a whole family effort. "Mum is definitely her main carer, although we all help out," he says. "Being a carer means a lot more than being a parent. It's a full-time thing. Mum and Kirsty are incredibly close.

"Although Kirsty needs care, we try to treat her as normally as possible, which I think has made her more independent."

In 2007, Craig turned down a $400,000-a-season contract with the Gold Coast Titans because he didn't want to leave his family, particularly Kirsty, in Sydney. Now Kirsty has finished high school, and is applying for part-time jobs, Craig finally feels comfortable enough to take a lucrative contract to play in Japan.

"My four sisters have all just come over for a holiday," he says. "It was good to give Mum a break and we had a great time.

"You always worry about your family and your sisters. I guess with Kirsty I just worry a little bit more."

Tuesday, 17 August 2010

Federal Election 2010: People With Disability statements

Peak organisation People with Disability (Australia) has collected its media releases, voting information and issues statements related to the Federal Election here:

People With Disability on the 2010 Federal Election

Centrelink: changes to Carer Allownce/Carer Payment applications and eligibility

:Recent changes to application for Carer Allowance (child under 16 years) should not affect parents of children with Down syndrome since Down syndrome is on the list of eligible conditions.  However, changes to the application process for Carer Allowance for those caring for a person with Down syndrome 16 yrs and over, and changes to Carer Payment eligibility and application will be relevant to some families.

The  FAHCSIA Fact Sheet, Improved Support for Carers, listing the changes from 1 July 2010 is available here.

FAHCSIA has provided this summary and contacts:

ARE YOU CARING FOR A CHILD UNDER 16 WITH A SEVERE DISABILITY OR SEVERE MEDICAL CONDITION?

Changes to the assessment for qualification to Carer Allowance (child) commenced on 1 July 2010 and include:

•   Single assessment tool – qualification for Carer Allowance (child) is now assessed and scored using the same process and scoring as used for Carer Payment (child). This makes it easier for carers. All carers qualified for Carer Allowance (child) on 30 June 2010 remain qualified for payment.

•   Easier transition to Carer Allowance (adult) – It is now easier for carers to move between Carer Allowance (child) and Carer Allowance (adult) when their child turns 16. The carer may remain qualified for Carer Allowance (child) for up to three months after the child turns 16 years. This transition period is already available for Carer Payment.

Do you require further information?

Further information is available from the payment page on Centrelink’s website www.centrelink.gov.au , telephone Centrelink on 13 27 17 or for TTY service 1800 810 586, the Indigenous Call Centre on 13 6380 and assistance in languages other than English on 13 1202, or visit your nearest Centrelink office.

Monday, 16 August 2010

Parent & Carers Forum - Puberty, Sexuality & Relationships

FREE FORUM,  presented by Family Planning NSW

For parents and carers of children and young people with intellectual disability


1 - 5 pm Saturday 11th September 2010

ASHFIELD

Further details, registration (including an online registration option) are available here.

Special Guest Presenter

Dr Tania May, Senior Medical Officer, NSW Health and Family Planning NSW, will talk about child to adolescence development.

CHOOSE from 3 practical workshops

Workshop 1: Relationships and Dating

Liz Dore, Relationships Counsellor and Educator, Relationships and Private Stuff.

This workshop will explore ways to support young people with disability in conversation skills, meeting people and making friends, safer dating and relationship development.

Workshop 2: Girls Business

Dr Tania May, Senior Medical Officer, NSW Health and Family Planning NSW.

This workshop will explore some of the sexuality issues for girls and young women with intellectual disability including menstruation management, contraception and more.

Workshop 3: Using Educational Resources

Catherine Henniker, Senior Health Education Officer, Family Planning NSW.

A practical workshop showcasing books, DVDs and other resources parents and carers can use to support their family member in the area of sexuality and relationships.

Federal Election 2010: parties endorse National Disability Insurance Scheme

Received from the National Disability Insurance Campaign team:

As you are aware, the end of the federal election campaign is looming fast. This election represents an unprecedented opportunity to push all of the major parties to give greater consideration to the provision of support for people with a disability, their families and carers. We are not looking however for piecemeal pre-election handouts – we are looking for fundamental transformational reform on the scale of a National Disability Insurance Scheme.


The National Disability and Carer Alliance therefore presented the following statement to all three major parties – Coalition, Greens and ALP – and asked them for their formal endorsement. Click here to read a document that summarises their responses. We have also included material from the Carers Alliance who have declared their support for the introduction of an NDIS.

The current disability support system is unsustainable and indefensible. It is chronically under-funded, inefficient, inequitable and, most seriously, fails to meet the needs of Australians with a disability, their families and carers. Unless there is fundamental change, the gap between the need for disability services and their availability will grow.

We therefore call on all parties to commit to major reform of the disability services system immediately following the final report from the Productivity Commission’s Inquiry into a Disability Care and Support Scheme, due in July 2011.


The reforms, most importantly the introduction of a National Disability Insurance Scheme, should create a system that is equitable, efficient, sustainable and based on self determination. The person with a disability, their family or carer should be placed at the centre – exercising choice, control and receiving the services and supports they require for as long as they require them.

We are asking you to distribute the material in the attached press release to all your staff, members and clients for their consideration in the forthcoming election. We are not trying to tell people how to vote – we are simply presenting a summary of each party’s position to inform individuals as they consider how to cast their vote on August 21. We strongly encourage you to top and tail the material with your own particular message.

By conservative estimates there are more than 1.4 million people with a disability which has a significant impact on their daily life in this country, and a further 600,000 people providing unpaid full time care. These figures do not include people with a more moderate disability, extended family members, interested friends and committed staff members. Numerically as a group we are strong. Much smaller groups of people have far greater sway with politicians and the public. We now need to put a strong message to the politicians and the public that things must change and change soon. We must demonstrate that we are united in our support for a National Disability Insurance Scheme.

If you have any questions about the material please contact Kirsten Deane at the National Disability and Carer Alliance kirstendeane@disabilitycareralliance.org.au 

Thursday, 12 August 2010

Library Thursdays: Moira Pieterse

Moira Pieterse has contributed much to the Down syndrome community in Sydney as well as NSW and the world. She established and ran the Down Syndrome Program at Macquarie University beginning in 1975. She co-wrote the well known program for early intervention--Small Steps: an early intervention program for children with developmental delays, (Moira Pieterse and Robin Treloar with Sue Cairns, Diana Uther and Erica Brar) which included communication, gross motor, fine motor, social skills and developmental checklists and is still relevant today. She helped develop The Macquarie Reading Program and researched literacy in children with Down syndrome. She spent time in Russia, the Netherlands, England, Slovenia and other countries helping parents with children with Down syndrome. She was involved in the beginning of integration in mainstream classrooms.
In addition to all of that, Moira dedicatedly promoted amongst health professionals and others in the community the rights and potential of people with Down syndrome.

Last week Moira presented the DS NSW library with many interesting pieces of her work. They include translations of Small Steps in Dutch, German, Turkish and Slovenian, photos from the Macquarie Down Syndrome Program, many of her research papers and others' works from the same period.

We are very grateful to Moira for all she has done for so many as well as providing access through our library to her works. If you are interested in any of them, come and have a look. A complete list of what's available with be posted when they are catalogued.


To borrow anything from the library, just call 9841 4410 or email.

Wednesday, 11 August 2010

Grafton/Coffs Harbour families

Olivia's family has asked us to pass on this request via the blog:

We would like to make contact with other families of young children with Down syndrome (5 – 11yrs) in the Grafton/Coffs Harbour region. We’re looking to move there ourselves within the next 6 months or so and would really love to talk to some other parents regarding schooling options, issues, services (speech etc) in those areas.


Sonia and Jason Brown (parents to Olivia, 5yrs)
Mob: 0432 510 106
Email: angels2two@hotmail.com

Tuesday, 10 August 2010

Options for special needs kids

Debate is intensifying over whether children with special needs or disabilities should be educated away from mainstream classrooms, writes Steve Dow.  Read the full text of this article from yesterday's Sydney Morning Herald here.

The article prompted this response today, in a letter to the editor:

I am flummoxed that the argument about inclusive education is back at square one (''Options for special needs kids'', August 9). For parents who have children with special needs in mainstream classrooms, and for teachers experienced at having such a diverse classroom, the issue is so much further along.

The real issue is not whether special needs children can be educated in a mainstream setting, but that the funding structures and bureaucratic systems in education have failed to keep up with the change. The NSW Department of Education's funding for classroom aides is woefully inadequate and bordering on negligent. It has been for years.

All the longitudinal studies show that the positive outcomes for special needs and ''normal'' children in inclusive education settings far outstrip the negative. If we are to talk about ''options'' for special needs children, let's start by not limiting them.

Kim Berry
Narrabeen

Monday, 9 August 2010

Federal Election 2010: Greens and Carer's Alliance

The Greens’ policy on disability is listed on their website.

In NSW and other states, the Carers Alliance has endorsed candidates for the Senate and some lower house seats with a specific focus on carer and disability issues. The Carers Alliance is a registered political Party

The blog Purple and Orange includes quite detailed analysis of the current election campaign policies and issues as they relate to people with disabilities, written by Robbi Williams.

DS NSW Update: August 2010 issue

The August 2010 issue of the Down Syndrome NSW e-Update is now available here.


The Down Syndrome NSW Update is a monthly listing of events (both DS NSW and other organisations) of interest to people with Down syndrome and their families, and information needing to be disseminated at short notice.

Subscribe for email delivery in the subscription box at the top of the column on the right of this screen.

To submit content, please contact the editor at update@dsansw.org.au  or call 0409 911 913 by the 8th of the month for inclusion in the following month's issue.

Saturday, 7 August 2010

Communication and Supporting Skills Workshops for Parents of Children and Adults with Disabilities

Eight Mondays:

September 6th, 13th, 20th, 27th 
and 
October 11th, 18th 25th, 2010

10.30am to 12.30pm, with refreshments from 10.00am

This programme aims to empower parents and to encourage them to be as effective as possible for the demanding rolethey have. The programme acknowledges the considerable expertise of parents and seeks to promote: 
  • Self-care in order to prevent burnout
  • Stress management as a means of reducing stress
  • Mutual support for accessing support for self and others
  • Listening skills as a means of enhancing relationships (both within the family and with service providers)
  • Assertion skills as a way of claiming rights and having needs met
  • Information to ensure awareness and confidence. 
The programme will describe the reactions and feelings that parents of disabled children and adults report they experienced when they were first told that their child had a disability. Opportunities will be provided for participants to share their experiences.
The aim is to provide parents with the skills to more ably manage the issues that family members of children and adults with disability encounter.
Content of Workshops:
  • Setting the scene:   introductions, overview & purpose of the workshops; sharing family details; dealing with stress and caring for oneself. 
  • Reactions and feelings of parents to the diagnosis of disability; sharing of experiences; approaches to mutual support. 
  • What is support? Developing the skills to support others.
  • Further skills to support self and others.
  • Still more skills to support self and others.
  • Developing the skills of assertion as a means of advocating for oneself, one’s family and others.
  • Further assertion/advocacy skills. Revision and integration of the skills of the workshops. 
Facilitators:    Ray Murray and Nola Manickam
Ray has facilitated this type of workshop on a regular basis in Auckland, New Zealand and Dublin, Ireland as well as training parents and professionals to work as partners in delivering similar workshops in Queensland for the Parent to Parent Association.
Nola is a parent and has worked in the field as an Radiographer. Nola supports the work of the Centre for Disability Studies as a member of the Board.
Fee:  $50.00 (for whole programme)
Venue:  St. Albans Anglican Church, Lower Hall, 3 Pembroke Street, Epping (2 minutes walk from the station)
Booking:  contact Margaret
Phone:   8878 0500
Email:    mcarrick@med.usyd.edu.au

Thursday, 5 August 2010

Library Thursdays: Strong Love

If you are still looking for a film for these cold nights, you may want to have a look at Strong Love (Bonnie Burt Productions, 2007) It is a documentary following two young adults, Jon and Holly, who have Down syndrome as they plan their marriage and then start their married life together. Much of Jon's life centers around weight-lifting competitions as he is a world record holder and Special Olympian. It is an interesting view into how he fits into this world. The parents and Jon's coach tell their stories of their relationships with Jon and Holly. The evolution of these relationships over the three years is quite insightful. Holly and Jon are a wonderful couple and their story would be of interest to parents, professionals, students and people with Down syndrome.

Other links:
Sprout Film Festival - Strong Love was shown in this festival in 2008. The goal of this festival is:
By presenting films of artistry and intellect, the festival hopes to reinforce accurate portrayals of people with developmental disabilities and expose the general public to important issues facing this population. The goal is an enjoyable and enlightening experience that will help breakdown stereotypes, promoting a greater acceptance of differences and awareness of similarities.

If you'd like to borrow Strong Love or anything else from the library, email us or call.

Wednesday, 4 August 2010

Numicon training: Wyong and Cranebrook

Numicon is an inclusive, multi-sensory approach to teaching numeracy using patterns to represent each numeral.   www.numicon.co.nz


Numicon training is being offered for teachers in NSW:

Wyong - Friday 13th August 2010

Cranebrook - Tuesday 17th August 2010

Detailed fliers and registration are available via Numicon NZ, here.

Listening with the intent to hear

Joan Medlen is well known for her work promoting healthy eating for people with Down syndrome, but she has many other talents.  She is an active participant in the Healthy Athletes program for Special Olympics, and combines that work with her interest in effective communication to promote health literacy. Listening with the intent to hear is an  excellent and practical analysis of a very short but powerful video of a man with Down syndrome who really has something to say, about his feelings about being teased, and about the importance of the listener's skill.

Joan Medlen's blogs and website:

Health Literacy
Phronesis - Practical Wisdom
Healthy Lifestyle Coaching for All Ages and Stages

Tuesday, 3 August 2010

Federal election campaign 2010: a mother speaks to politicians about long term care

Jenny Rollo is a Sydney mother, well acquainted with the need for adults with disabilities and their families for assurance that their long term needs will be met. In this short ABC election news video, she lays her concerns on the line, as she has done many times, and in many forums, to politicians of every persuasion.

Team Down Syndrome NSW: City 2 Surf 2010

A big thank you and best wishes to the 101 City2surfers who will tackle heartbreak hill as part of ‘Team Down Syndrome’ in this Sunday’s City2Surf.

Regardless of whether you finish at the head of the pack or the tail, you are all already champions in our book.

It’s wonderful to see so many youngsters stepping out in their first city2surf with mum or dad, along with some ‘veterans’ of 30 or more races.

Over $3000 has been raised so far, and although we unfortunately don’t have the space to mention everyone here, special commendation to those currently on top of our fundraising ‘leaderboard’: (click the links below to view and support their efforts)

Natascha & Aisha Milsom: www.everydayhero.com.au/natascha_milsom

Fiona Waters & Team DS: www.everydayhero.com.au/team_ds

‘Maddy 4 EVA’: www.everydayhero.com.au/lena__oshana

Lucy Perkins: www.everydayhero.com.au/lucyperkins

Jan Drosselmeyer: www.everydayhero.com.au/Jan_Drosselmeyer

Brad n’ Beth Dewhurst: www.everydayhero.com.au/bradnbeth_for_dsnsw  

Monday, 2 August 2010

$250,000 NSW Government grant to research younger onset dementia

It is well known that people with Down syndrome are vulnerable to developing younger onset dementia (defined as dementia diagnosed before the age of 65 yrs).  Down Syndrome NSW has taken a keen interest in recent developments in support for people with younger onset dementia and their carers, so this announcement is another welcome initiative:

The NSW Government will fund a groundbreaking $250,000 research study into younger onset dementia to improve services and support for younger people with the disease.
 
Premier Kristina Keneally and Minister for Ageing and Disability Services Peter Primrose have announced that Alzheimer’s Australia NSW would undertake the two-year project. They made the announcement at the official opening of the organisation’s new headquarters on the Macquarie Hospital campus.

Alzheimer’s Australia NSW is the peak body for people with dementia, providing advocacy, support services and education to sufferers and their carers.

Alzheimer’s is the most common form of dementia, which causes a progressive decline in a person’s memory, judgement and communication.

In NSW, 84,000 people currently live with dementia and this figure is expected to soar to 341,000 people by 2050.

Younger onset dementia affects people aged 45-64 and there are an estimated 5,000 people with this condition in NSW.

The $250,000 research project follows a prevalence study by the South East Sydney Area Health Service, which found 1 in 750 people aged 45 to 64 had younger onset dementia.

 The project will focus on developing plans, services and accommodation options specifically shaped around people under 65 who do not fit into typical dementia support services designed for older people.

The NSW Government is also providing:

$1.2 million in the 2010/11 Budget for additional dementia clinical nurse consultants;  
  • $1 million in recurrent funding to Alzheimer’s Australia NSW to maintain a dementia resource service, advisory services and a carer education officer; and  
  • Rental assistance for the new Alzheimer’s Australia headquarters at Macquarie Hospital Campus and a $17,000 grant for capital upgrades to the building.  
“People with younger onset dementia have vastly different needs to those diagnosed over the age of 65 and don’t fit into mainstream dementia services,” Ms Keneally said.

“This NSW Government funded research project will address the different types of support people with younger onset dementia need to maintain their quality of life.”

“Alzheimer’s Australia is well placed to provide the information we need to make life better for people with younger onset dementia,” Mr Primrose said.

“Alzheimer’s Australia NSW provides invaluable support services for people with the disease, their families and carers and we look forward to seeing the results of the research.”

CEO of Alzheimer’s Australia John Watkins said: “We warmly welcome this grant as it gives us an opportunity to focus on the special needs of those with younger onset dementia."

Sunday, 1 August 2010

Sunday blog surfing .....

Alex is a 17 year old girl who lives with her family in Colorado.  A year ago, her mother started a blog to chronicle one year of her life, that she knew would culminate in the National Special Olympics Games in Nebraska earlier this month.  That year has now drawn to a close, and the blog is signed off, but you can still read it here:  The Ordinary Life of an Extraordinary Girl

Communication Skills for Life continues to provide strong, practical ideas and strategies for developing communication skills, and harnessing the motivation provided by individual interests ... with occasional glimpses into Jennifer's family life, including her three siblings who have Down syndrome.  This last week she tells about her brothers' success in the "Lose the Training Wheels" program.
 
Retired special educator and mother of 55 yr old Billy, Dr Jane Schulz has moved her blog to their joint website, www.grownmannow.com, This week she has blogged about the 20th anniversary of the Americans with Disabilities Act, and has outed herself as a pushy parent (not that it was a secret!).  Jane and Billy have also appeared on the cover, and in the cover story of the Summer 2010 issue of the Western Carolina University magazine, "Pioneers together: a son with Down syndrome inspires his mother to become a leader in special education".   You can see them online here and download the magazine as a .pdf here to get a better idea of how it appeared in print.

Saturday, 31 July 2010

Federal election campaign 2: Liberal Party policy and funding announcement on services to support people with disabilities

The Liberal Party announced a policy and funding package for students with disabilities yesterday (Friday 30th July) as part of its election campaign. 

The Coalition will invest $314 million to provide greater support to students with a disability and their families.

It is time to take real action to help to get the best possible educational outcomes for Australian students with a disability.

Click here to read the full announcement on the Liberal Party's website.

The Liberal Party has said that additional policies related to people with disabilities will be forthcoming.

Friday, 30 July 2010

Thursday, 29 July 2010

Federal election campaign: Labor Party policy and funding announcement on services to support people with disabilities

The Prime Minister announced a package of policies and funding to support people with disabilities this morning, as part of the Labor Party's election campaign.  Below you will find brief extracts from Parliamentary Secretary Bill Shorten's e-News bulletin, released earlier today. Click on the links to read the documents in full.

Children with disability given a better start in life

The Gillard Labor Government will provide new access to early intervention services to help give more children with disability a better start in life.

Under Federal Labor’s new program, more children with disability will be entitled to the same benefits as under the Helping Children with Autism Package. This package represents a total investment of $122 million over four years.
 More supported accommodation for people with disability

A re-elected Gillard Labor Government will establish a new capital fund to build innovative, community-based supported accommodation places for people with disability.

A total of $60 million will be provided over the next four years for this initiative, on top of the more than $6 billion provided to the States and Territories over five years from 2007 through the National Disability Agreement.
National Disability Strategy

The Gillard Labor Government has released its draft National Disability Strategy which outlines a 10-year national plan to improve the lives of people with disability, promote participation, and create a more inclusive society.

A re-elected Gillard Labor Government will take the National Disability Strategy to the Council of Australian Governments early next term.

Library Thursdays: Sex and relationships booklets, Plus resources for children on Coeliac Disease

CHANGE is an organisation led by people with disabilities in the UK who seek equal rights for people with intellectual disabilities (called learning disabilities in the UK). They have produced a series of books for people with intellectual disabilities on sex and relationships. Titles include: Friendships and relationships, Sex and masturbation, Safe sex and contraception, Lesbian, gay, bisexual and trans and Sexual abuse. The books are written by people with intellectual disabilities using easy language and pictures to support discussion of these topics.
These books are all available in the library to borrow.

Also new in this week following on from last week's blog are:
Cassie Croc has coeliac disease by Anthea Allen (who wrote this when she was 11, a year after she was diagnosed with coeliac disease), tells the story of Cassie Croc's diagnosis and treatment of coeliac disease.
Amy can't eat gluten by Judy Young is another book for children to help them and others understand coeliac disease. It is in black and white and includes puzzles and recipes.

If you'd like to borrow any of the above resources or anything else, please email or call.

Tuesday, 27 July 2010

More alike than different: campaign video

The National Down Syndrome Congress (based in Atlanta, Georgia) is running an awareness campaign focusing on how people with Down syndrome are more like everyone else than different.  This video is a powerful 4.51 mins:



Here is a ten minute documentary from the same campaign:

.

Monday, 26 July 2010

Gateway: A visual arts experience from the artists at Boonah Creative Arts

Glebe : 30 July - 17 August 2010:
An exhibition of works from the visual arts students at Boonah Creative Arts Centre.

Gateway celebrates the creative diversity of artists with a disability.

Gallery hours Monday to Friday 10:00 am to 5:00 pm. Exhibition continues until 17 August 2010.

Gallery Red, Shop 11, 131 Glebe Point Road, Glebe 2037.

Open to the general public, gold coin donation

Access: Wheelchair access limited. Gallery access has a very small step up through a standard size doorway. Large, motorised wheelchairs may have difficulty.

More info: Boonah Creative Arts Centre tel 02 9499 5675 or email heidi.mecklem@dbb.org.au.

Source:  Accessable Arts NSW

Sunday, 25 July 2010

New bowling group for secondary students: Eastern Suburbs

Are you looking for regular, social and leisure opportunities for you teen, in the Eastern Suburbs of Sydney?  Natascha Milsom's note could be for you - please contact her directly:

I am in the preliminary stages of setting up a Bowling group in the Eastern Suburbs catering for children with Down syndrome attending Secondary School. This will be a monthly event. We intend to hold a gathering on the last Sunday of every month.

The intention is for the individuals to form friendships with other children with Down syndrome attending secondary school while having fun bowling. We would like a nice mix of girls and boys if possible.

At least one parent will be expected to attend which will give parents the opportunity to support the group in the early stages and eventually parents will be able to relax, have a drink and share information with other parents. Siblings are also welcome to bowl. As they grow up they will play an important role in the lives of their sibling with Down Syndrome.

Once I have a list of interested parties I will be in contact with regards to possible locations and cost to get a consensus of what works best for everyone.

Please send your contact details

1. Your name & email address
2. Name of your child

3. Child's age

4. Name of school they attend

5. Postal address

Looking forward to hearing from you,

Natascha Milsom, milsom@hotmail.com

Housing Pathways: single application process for public housing

IDEAS has written about this welcome innovation:

A new program called 'Housing Pathways' was recently introduced to make it simpler, fairer and easier for people to apply for and be matched with housing assistance. In the past you had to register an application with Housing NSW and with community housing providers, with each service/organisation having their own waiting lists, you needed to contact each service/organisation separately to find out where your application was up to.

Now Housing NSW, 28 community housing providers across the state and the Aboriginal Housing office has set up one application system under Housing Pathways. Now you can fill out one application form for all the participating services/organisations and choose who you would like to provide housing assistance to you.

.....  Click here to read more on the IDEAS blog

Saturday, 24 July 2010

Disability and culture

Sydney writer Fiona Place has started a new blog, Disability and Culture, to the discuss the issues facing parents raising a child with an intellectual disability, and how culture shapes and is shaped by our experience of disability.

Some of her writing is deeply personal, some is more focused on ideas - it is well worth a bookmark, or a spot on the "favourites" list.  There is now a link from our blogroll, in the right hand column.

Friday, 23 July 2010

Disabled students need to be part of mainstream

Letters to the editor, Sydney Morning Herald today (23rd July) in response to Ross Jeffreys's letter yesterday:

As a teacher and a parent of a child with Down syndrome I have a vested interest in the issue of inclusion. I wholeheartedly agree that we need to manage resources more efficiently, and funding needs to be reconsidered. My daughter receives what I would call inadequate funding and I am thankful that she is at a school that is creative in how it supports her.

I was disturbed by the letter from Ross Jeffery (July 22). As an ''educator'' and an executive within the system, his opinions sound very similar to other ignorant views I have heard.

I should not have to justify my daughter's right to an education. She is not a second-class student. Research indicates that it is in her best interests to be in a mainstream class and at the moment I can see that she loves it there, is well adjusted and well liked by staff and peers and, most importantly, is learning not just social skills within her community but academic ones.

I also have a ''regular'' son at school. I do not need to go out of my way to argue for a fair go for him on a regular basis. No school gave me funny glances when I went to enrol him.

To suggest that mainstream students suffer because of the inclusion of disabled students is an ill-informed generalisation. Children with special needs are as diverse as the rest of the population and should not be vilified by educators.

The offensive singling out of students with learning difficulties, autism or Aspergers on the My School website is a ludicrous suggestion.

The inference seemed to me to be that these particular special needs children tended to be more trouble, a ridiculous statement. Perhaps we should identify what the religious beliefs or racial mix are of each school population while we are at it? Total guff.

As an assistant principal, Mr Jeffery would be better placed developing a passion for teaching - in loving to see the ''light bulb'' go on - for all the children in his school not just the ''privileged'' majority.
Shelley Phillips Five Dock

Disability Rocks Concert

Seymour Centre - Chippendale, Sydney


Sunday 1st August, 3pm

Dedicated parents of children with a disability have joined forces to change the scene for people with a disability throughout Australia. To spread the word whilst ensuring that you're well entertained, they have organised a high energy jazz concert with James Valentine (from ABC Radio 702) as MC.


It’s a Sunday afternoon of entertainment with political speakers highlighting some key proposals needed to enhance access to disability services in the future.

Music and dance are to be provided by Jim Conway and his Big Wheel Band, the James Valentine Quartet and Studio Artes.

The concert has been designed to appeal to a broad audience to spread the message about the value of a National Disability Insurance Scheme to the wider community.

Speakers will include Federal Parliamentary Secretary for Disabilities Bill Shorten, MP, his Opposition counterpart Senator Mitch Fifield, NSW Greens MLC Ian Cohen and MaryLou Carter from the Carers Alliance.

The Labor Government put a proposal for a National Disability Insurance Scheme before the Productivity Commission in late 2009. The Scheme would ensure funding for services and support needed by people with moderate to severe disabilities, using a combination of existing resources plus a medicare-style levy on Australian taxpayers of a proposed 0.8%. It would provide a safety net for Australians, covering people born with disability as well as those who become disabled due to accident, injury or illness.

The Productivity Commission will report on the Proposal by mid-2011. The Greens have agreed to support the Proposal. The Liberals are silent.

Attendance at the Concert will put pressure on Labor to follow through, and on the Liberal Party to break their silence.

Tickets: $28, with concessions available. To purchase, call the Seymour Centre on 02 9351 7940 or visit www.seymour.usyd.edu.au

What's next? 2 workshops for parents of pre-teens and young adolescents

Saturday 21st August

at Down Syndrome NSW, 80 Weston Street Harris Park (Sydney)

Register for either or both workshops, and for lunch if you choose.

Workshop 1:    10 00 am - 12.30 pm

Puberty - the onset and early years, information and resources for families.
LUNCH:  12.30 - 1.30 pm

Workshop 2:   1.30 - 4.00 pm

Preparing for High School - a workshop for parents of students transitioning to Year 7 in 2011 or 2012


Cost:  $22 per worksop.  Lunch:  $11 (adult siblings are welcome - no charge)

All enquiries, Siena, DS NSW 9841 4411 or workshops@dsansw.org.au

Something a little lighter ....

Here are some links to lighten the mood a little after those media reports, and the education inquiry ....

Thursday, 22 July 2010

Library Thursdays: Coeliac Disease Resources

According to Dasha Weir, who gave the Allan Crocker lecture on Celiac Disease and Down syndrome, 5% of people with Down syndrome have Celiac Disease. Some studies put this figure as high as 16%. Whatever the true figure is, it is higher than the incidence in the general population (about 1%) so it is useful to be aware of the symptoms and treatments. The following online articles, talks and websites are very useful resources. Also in our library, we have Kids with Celiac Disease: A family guide to raising happy healthy gluten-free children by Danna Korn (Woodbine,2001) and Incredible Edible Gluten-Free Food for Kids by Sheri L. Sanderson(Woodbine House, 2002).

To borrow any of the books mentioned or anything else, just call or email us.

Education inquiry - report released

The NSW Parliamentary inquiry into the provision of education to students with disabilities and special needs released its report yesterday, available online here.

Here is what the Sydney Morning Herald reported (21st July)

and two responses published in letters to the editor today (22nd July)

Teaching students with disabilities

   Teachers need more training to help students with disabilities (''Teachers overwhelmed by special needs'', July 21)? No amount of training compensates for the demands of disabled students in a mainstream class. As an assistant principal, I know how a disabled child with no full-time aide delays and disrupts lessons. When will the parents of mainstream students start demanding a fair go? The number of students with learning difficulties, autism or Asperger's should be shown on the My School website.
Ross Jeffery Wahroonga

   It could be inferred from your story that the parliamentary inquiry report found the inclusion of special needs students in mainstream classes "was to the detriment of other pupils". The report does not say this at all, but supported inclusive practice. It is time to bury this idea and address the real issues, which revolve around resources and the training of teachers.
   No amount of funding will be sufficient if there is no commitment to ensuring teaching staff are appropriately trained to meet the needs of all students. Those teachers employed in specialist roles need more intensive training and experience.
Annette Guterres Concord