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 Note: There is a file embedded within this post, please visit this post to download the file.

• Run Melbourne July 18: 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: 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: The Bridge to Brisbane is on Sunday 29 August and we will be having a team.  

• City-Bay September 19:  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 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

Download the seminar registration form for more information.

Seminar Registration Form

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  After the success of last year’s fundraising, the NSW team are again organising a Fragile X City to Surf team this year. Last year we were in the top 10 fundraisers and raised over $8000. This was a great achievement,so lets see what we can do in 2009! Getting involved in this event on August 9th would be a great opportunity to raise funds as well as providing an enjoyable (hopefully sunny) occasion for all involved.

If you are interested in being part of the team you will need to register in the City to Surf . Additionally, you can create your very own fundraising account as part of the Everyday Hero organisation.  Remember to put in the team password of cgk174 on the next page after creating your own page.  Go to Everyday Hero and register. 

After creating an account you can see the team’s participants and watch  fundraising figures grow as more kind people donate.  Through forwarding your fundraising webpage to your friends, colleagues and families they can donate a chosen amount to sponsor you in the run, from $5 to $500, every dollar raised is an excellent accomplishment in itself.

When you register we will also send you one of great Fragile X syndrome t-shirts  to wear on the run.  Last year’s team made a big impression with these black t-shirts. Just contact Christine or phone Jocelyn on 1300 394 636.

Our Queensland team are also having an active fundraising occasion, the Bridge to Brisbane on the 30th August 2009 .

Mel is also organising a Fragile X team to enter this event which will see an anticipated  40,000 participants of all ages and fitness levels take part in Queensland’s biggest annual fun run.  You don’t need to be an elite sportsman to join in on the 5km course, just run or walk your way to the finish line.

Please contact Mel Mikkelsen  if you are interested in promoting Fragile X awareness in this way and also help us to raise funds to support families affected by Fragile X syndrome. 

South Australia has also fielded a team in the City-Bay fun run on the 20th September. Kimberly and Mark Scott are running to raise awareness in South Australia.  You can support them by going to their Everyday Hero webpage to sponsor Kimberly.

The paper discusses the delivery of and access to disability respite services, the type of services provided, where they are delivered and the development of new respite services. It talks of :

• The purpose of respite
• The principles that underpin and guide the provision and delivery of respite services
• The current respite service system
• Other services that give carers a break
• Why the need to change
• Feedback from families and advocates
• Results of Research

Based on client feedback and research, the discussion paper proposes that the reform of respite care will be based on:

• the expansion of respite services and the development of new service models in response to unmet need;
• giving individuals greater control and choice in the services they receive;
• streamlining access to services; and
• building the capacity of the service system.

Research indicating who most need respite services has identified priority groups of carers. These are

• Carers of people with challenging behaviours and severe disabilities
• Young carers
• Older parent carers
• Hidden carers – carers who may not identify with the word `carer’.
• Aboriginal and Culturally and Linguistically Diverse (CALD) carers

This initiative is part of

• “Stronger Together - A new direction for disability services in NSW 2006-2016″ the NSW government’s plan to deliver better services for people with a disability and their families. The plan provides an additional $1 billion funding over the first five years.
• The NSW Carers Action Plan 2007 ­- 2012 which
  outlines the NSW Government’s commitment to the state’s 750,000 carers over its first five years. This plan recognizes:
  • Carers are recognised, respected and valued.
  • Hidden carers are identified and supported.
  • Services for carers and the people they care for are improved.
  • Carers are partners in care.
  • Carers are supported to combine caring and work

The New Directions for respite services in NSW discussion paper invites feedback from the community, until 26 June 2009, about the proposed new directions. The discussion paper is available for in download – pdf format or from the link on the DADHC’s website at www.dadhc.nsw.gov.au. A number of questions have been set for discussion:

• Priority groups of carers
  • What difference does respite make to you and your family?
  • What types of respite services have you used?
  • What ones have helped you the most? Why?
  • What types of respite services does your family need?
  • Have you faced any barriers in accessing respite?
  • Are respite services available at the best times for you?
  • When do you and your family need respite?
  • Are there any other types of respite services you would like to see provided?
• Expanding services and developing new service models in response to unmet need
  • Do you know of any other service models that are operating well in
    other jurisdictions that we should consider piloting in NSW?
  • In what ways can we improve our existing services models?
• Older Parent Carers
  • What types of respite or other services are needed for older carers?
  • How can respite services for older carers be improved?
• People with challenging behaviours and high support needs
  • How can respite services be improved so that these clients can access them?
  • How can services be delivered to meet individual need?
  • What services are needed for these client groups?
  • How can these respite services be integrated with other services?
  • How can respite services be delivered for high support and complex
    health care needs in regional and remote areas?
• Giving individuals greater choice and control in the services they receive
  • What degree of choice and control do families want?
  • In what ways can flexible respite be more flexible to suit individual needs?
  • What other activities could be provided by flexible respite services?
  • How can service providers work together to provide the right mix and balance of flexible respite activities?
  • In what ways can flexible respite services support working carers?
  • Would the provision of more tailored flexible activities reduce the need for some families to utilise centre-based respite?
• Streamlining access to services
  • How can access to centre based respite be improved?
  • How can access to other respite services be improved?
• Building the capacity of the service system
  • In what ways can DADHC support the ongoing training needs of the
    NGO sector in relation to respite, particularly surrounding the service
    provision for clients with complex needs?
  • What types of specific training are needed for respite staff?

If you wish to submit your answers to these questions, after reading the discussion paper, you can post them to:

Respite Directorate
NSW Department of Ageing, Disability and Home Care
Level 5, 83 Clarence Street SYDNEY NSW 2000

Alternatively your feedback can be emailed to respite@dadhc.nsw.gov.au

Despite the cloudy morning threatening rain, the sun shone for our sausage sizzle and we had a great spot near the water at Putney Park. There were plenty of activities to watch and participate in, which included several helicopters flying over, a few dragon boats in the bay and an intense game of cricket!

It was an opportunity to meet new people and put faces to voices on the phone. It is always a pleasure to see our fragile x kids get along well together and enjoy themselves. As one mum said: “It was lovely to meet so many other families with such a great turn out and to meet their special people. It is amazing how different and diversely it (Fragile X) affects individuals and one thing still shines through, just how special they are and their caring families.”

Christine

NSW Fragile X Family Support Group

Invites all families from the Fragile X community

to a BBQ lunch on

Sunday 5th April from 11.30 am to 3.00 pm

at Putney Park

Pellisier Road, Putney

Look for the Fragile X banner

Sausages and bread rolls will be provided

Please bring a small plate to share (e.g. salad/slice etc)

Meet with other families and have fun playing

cricket, boule and chatting

RSVP Christine 0414 300 174 or 0409 987 012;

Please call if weather is uncertain

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!