Fragile X Syndrome has been given a specific mention by the Prime Minister, Julia Gillard, in the proposed “A Better Start for Children with Disability” scheme. She says that “Children diagnosed with sight and hearing impairments, cerebral palsy, Down syndrome or Fragile X syndrome will benefit under the program”. Although there is as yet no cure for Fragile X, therapies and treatment can improve the lives of those affected, helping them progress.

The aim of the proposed scheme is to ensure that children who have disabilities which affect their development have access to intensive early intervention therapies and treatments. Children under six with a diagnosis of a listed disability will be eligible to receive up to $12,000 for early intervention services. A number of new Medicare funded diagnosis and treatment services will also be made available for children diagnosed before the age of 13 years with these conditions. Families will be able to access the treatment items up to their child’s fifteenth birthday.

The Better Start for Children with Disability initiative will be delivered on a similar basis to the Helping Children with Autism package which we discussed in an earlier article.

Further Information

• You can download the A Better Start for Children with Disability Fact Sheet and read the Media Release on the website of
  Bill Shorten MP, Parliamentary Secretary for Disabilities and Children’s Services: Children with disability given a better start.
• ABC video of the Prime Minister’s announcement of the scheme: PM promises cash for disabled children
• Carers Australia welcomes the Prime Minister’s announcements around better support for people with a disability and their families.

On Tuesday July 20th TV channels 7, 9 and the ABC did segments on fragile X syndrome on the Sydney news.  We were very pleased that our probono media advisor, Virginia Nichols, was successful in organising the media launch for Fragile X Awareness Day and wish to thank her for her enthusiastic support and the incredible amount of time that she dedicated to our cause.

You can view the ABC segment  by clicking on this link:  http://www.abc.net.au/news/video/2010/07/20/2959418.htm 

Fragile X Awareness Day
22nd July 2010

Fragile X Awareness Day on July 22nd is to promote the awareness of Fragile X syndrome. The incidence of Fragile X can be significantly reduced through awareness and early intervention assists in providing support and strategies to
help improve the quality of life of a Fragile X child. In Australia, it is estimated that one child every week is born with Fragile X and twelve are born carriers.

Please support the Fragile X Association of Australia through Fragile X Awareness Day by holding morning teas, having sausage sizzles or just talking about Fragile X syndrome to your family, friends and colleagues.  Fragile X Awareness events can be held throughout July.

If you are holding an event please contact the Fragile X Association on 1300 FX INFO (1300 394 636) for information on fundraising.  We have posters available that were designed by RU Advertising and printed by Sydney IVF.  Also we have pens and ribbons for sale for $2. Just contact Jocelyn or Bernadette at the office to order your supplies.

If you are a school or organisation, please download our schools package

Fragile X teams in 4 city fun runs!

• Run Melbourne July 18, 2010,: to date we have 4 participants in RunMelbourne on Sunday July 18.  Jannine Davey, Kelly Amore, Sarah Donahue and Brendan Fitzgerald. You can sponsor them through the Everyday Hero website:  

  http://runmelbourne.everydayhero.com.au/

• City2Surf August 8 2010: we have a team running in the City2Surf on Sunday August 8. If you are interested in being part of the team you will need to register in the City2Surf http://city2surf.com.au/. You can be part of the fundraising by creating your own fundraising account. Register on http://www.everydayhero.com.au/Fragile_X_2010 and click on Join this team in the top right hand corner of the fundraising page. You then create your own fundraising page and follow the prompts – the team password is ‘fxteam’.  It is a wonderful opportunity to meet other fragile X families and be part of the general atmosphere that the City 2 Surf creates.   At the conclusion, the Kellehers will run the usual BBQ (this is a fun occasion especially for our FX kids) at their home.  

•  Bridge to Brisbane August 29, 2010: The Bridge to Brisbane is on Sunday 29 August and we will be having a team.  

• City-Bay September 19, 2010:  The Adelaide City-Bay is on Sunday September 19 and there will be Fragile X  team.

We will be updating this post for the Brisbane and Adelaide fun runs once the teams have registered.

The Fragile X Association of Australia has entered a submission into the “Inquiry into the Provision of Education to Students with a Disability or Special Needs” being conducted by The NSW Legislative Council of the NSW Parliament. The submission was prepared by Dr Robyn Iredale, PhD, our Association’s Committee Secretary and Adjunct Associate Professor at The Australian Demographic & Social Research Institute,  Australian National University.

The Committee will investigate best practice approaches in determining the allocation of funding to children with a disability or special needs with a particular focus on what can be learned from the provision of education to students with a disability or special needs in Australia and overseas.

In announcing the inquiry, The Chair of General Purpose Standing Committee No.2, Ms Robyn Parker MLC said: “Interacting with the education system can be a frustrating and confusing experience for parents of a child with a disability or special needs, as they attempt to ensure that their child gets adequate support to reach their full potential.”

“An area of concern for teachers and parents alike is the adequacy of funding for children with a disability or special needs attending NSW schools. The Inquiry was established in recognition of their concerns”, Ms Parker noted.

The Committee will investigate best practice approaches in determining the allocation of funding to children with a disability or special needs. “We will take a close look at what can be learned from the provision of education to students with a disability or special needs in Australia and overseas. In particular, we will look at whether a student’s funding allocation should be based on their functioning capacity rather than their disability”, she added.

A number of other important issues are also covered by the terms of reference, including:

• Level and adequacy of current special education places
• Adequacy of support services for children with a disability in mainstream school classes
• Provision of a suitable curriculum for intellectually disabled and conduct disordered students
• Access to professional support services, such as speech therapy, occupational therapy, physiotherapy and school counsellors
• Adequacy of pre-service and post-service teacher training.

Further Information:

• FXAA’s submission to the Inquiry
• A list of all submissions to the Inquiry and Transcripts of Public Meetings can be found on the “The provision of education to students with a disability or special needs (Inquiry) page on the Parliament of NSW website.
• Inquiry Terms of Reference
• Article from the Business Spectator NSW private schools overfunded: inquiry

Our Financial Statements for the year ending 30/6/2009 are now available for download:

Financial Statements 2009 – PDF File