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 

Free One Day Workshop

Hobart

Friday 12th March 2010

Fragile X Syndrome

The Fragile X Association, through the sponsorship of the Fred Archer Charitable Trust managed by Trust Company Ltd, have organised for the Fragile X Alliance team, led by Dr Jonathan Cohen, to provide an overview of Fragile  X syndrome.  This free workshop is open to health professionals, educators and families and carers of people affected with Fragile X syndrome.

All speakers are recognised experts in their field and will cover a wide range of management strategies relevant to developmental disabilities and autism spectrum disorders.

If you are interested please download the Hobart Fragile X Workshop flyer for more information and to register.

The Australian and New Zealand National Fragile X survey has been extended until the end of October

This study is the first national survey of families in Australia and New Zealand who have a child with fragile X. The results of the survey will be shared with fragile X organisations, researchers, and legislators to help change policy and improve practice.

Although many studies have been conducted with families of children with fragile X, this study will be the first in Australia and New Zealand to survey a large number of families. Your participation will provide researchers with a national picture of the needs of families with a child who has fragile X.

All information collected will be kept confidential. Your answers will be combined with the information we get from other families and any links to names or addresses will be removed prior to data analysis. Individual answers and names will not be published in any study report or disclosed to any individual or organisation.

ENROL NOW!

To participate, simply visit the website at https://fragilex.rti.org/ and complete the questionaire online or call 1300 FX INFO (300 394 636) to arrange an interview.

The People with Disability Australia (PWD) E-Bulletin is a monthly email newsletter that contains news and views on disability rights issues in Australia and internationally. Subscription to the bulletin is open to members and any other interested parties.

As well as keeping up with disability news the bulletin gives details of various government inquiries. Some give the opportunity for parents/carers to give their own views, express opinions or share experiences and to attend public hearings. If you want to have your say it is a good idea to keep up to date with such information.

This month’s edition includes articles on:

• NSW Parliament inquiry into substitute decision making for persons with disability
• NSW Ombudsman reports on review of individualised planning in large residential centres
• Shelter NSW conference looks at the housing crisis in Australia
• Victoria’s Guardianship laws to be reviewed.
• Women with Disabilities (WA) Inc now has a website
• Assisting domestic violence services to better support women with disability
• Protest at Telstra bill payment fee
• UN experts call for enhancing the protection of persons with disability

Current and back issues of the newsletter can be downloaded from their E-bulletin page although, rather than having to remember to regularly go to the site, I find it more useful to subscribe to the email edition.

People with Disability Australia (PWD) is a national non-profit, non-government disability rights and advocacy organisation.

Fragile X Syndrome has been receiving more media coverage in Australia recently. This is excellent as increasing awareness and knowledge about the syndrome will lead to more people being correctly diagnosed and to an increase in resources available for research, treatment and education

May’s edition of Cleo, which is out now, features an interview with Megan Levy, a 23 year old Australian woman who has the full mutation of Fragile X. Titled “I have FRAGILE X SYNDROME!” Megan talks about her symptoms and how Fragile X affects her life in regard to employment, relationships and socializing. Well done Megan, thank you for sharing your experiences with us.

That’s Life Magazine published an article in Issue 10 March 2009 featuring Mel Mikkleson and family. A summary can be found on the That’s Life site: My Son’s X Factor. Mel was contacted by That’s Life after she featured in a story about Fragile X in her local newspaper. Mel who is on our committee and runs the Queensland support group always works hard to promote knowledge of Fragile X.

In The Australian newspaper an article published in February, Screening for fragile X sidelined, features discussion by Don Bailey, president of the US National Fragile X Foundation, clinical geneticist Mike Field and associate professor Sylvia Metcalfe, from the University of Melbourne and Murdoch Children’s Research Institute on the issue of screening newborns. John Kelleher, president of our Association, and his wife, Christine, talk of their own experiences and problems of receiving late diagnoses for their two children with Fragile X syndrome.

Making the Pizzas

We had a great roll-up for the pizza/fishing day (quasi Christmas function) with two current family members attending for the first time.  Unfortunately, the weather was not the best, windy and rainy and clearing in time for our departure!   Tim had fired up the pizza oven well in advance and Robyn had been busy making the bases all morning, prior to our arrival.  Some of the toppings were awesome and even Gordon Ramsey would have been more than impressed!   As it would have been impossible to fish from the jetty Robyn was very innovative with a bucket and fishing line on the deck, in order to find a winner of the magnificent fishing trophy.   David Cox-Taylor was the well deserved recipient.   The day was a great success.

Thanks Tim and Robyn

The prize winner!

Autism Help Info

The Autism Help Info site has been created to provide user friendly, practical and readily accessible information on Autism Spectrum Disorders for all, including persons with ASD. It aims to increase awareness of ASD and provide practical strategies and resources for all those who teach, care for or provide therapy to children with ASD. Sections include Early Childhood, Education, Health, Community and Recreation and Employment Support.

From the What is autism spectrum disorder? page you can access an audio visual ‘Autism Training Program’, an interactive explanation ‘What is Autism’ and Frequently Asked Questions.

The Education Sections covers such areas as Behaviour Management, Social Interaction, Communication, Obsessions and Inflexibility, Sensory Issues and Developing Skills. Documents from the Education Sections are available for download and printing on the Printable Files page. These include Tip Sheets, Teacher Resources, Social Stories and a wide range of articles.

The Early Childhood Visual Aids page provides a range of printable clip art which could be used in story boards or picture schedules.

This site is the initiative of Gateways Support Services Inc and funded by the Department of Human Services, Victoria, Barwon-South Western Region. Although some of the services provided are specific to the region, most of the site is of a general nature and much of it is relevant to Fragile X Syndrome.

DEEWR

The Department of Education, Employment and Workplace Relations launched a new website on 3rd December.

An Even Start – National Tuition Program

An Even Start is an Australian Government initiative to assist students who are not making satisfactory progress in literacy and numeracy. It provides $700 worth (a minimum of 12 hours) of tuition in reading, writing or numeracy for eligible students and can cover school based or private, individual or group tuition.

Eligibility is based on the 2007 national minimum benchmarks in literacy (reading and writing) and numeracy in years 3, 5, and 7 has been extended to also include children who were formally exempt from the 2007 benchmark tests including those with special needs.

As yet it is unknown whether the program will continue and cover those who do not meet the benchmarks in future tests. Its effectiveness in meeting the needs of students who struggle with literacy and numeracy is being independently monitored

Me Too Resource Manual 

The Me Too Resource Manual (PDF) is a self help guide for parents of children with a disability in Queensland written from a parent’s perspective. This Manual has been created by the Developing Foundation Inc – a support group by families seeking appropriate treatment for a family member with a brain injury or a developmental disability.