Fragile X Awareness Month recognised today

As part of Fragile X Awareness Month that is being recognised today, Parliamentary Secretary for Disability and Carers, Senator Jan McLucas, is encouraging parents of young children with Fragile X Syndrome to register to receive up to $12,000 for early intervention services.

The Australian Government’s $147 million Better Start for Children with Disability initiative commenced this month, providing eligible children with disability, including Fragile X Syndrome, with flexible funding for early intervention services and therapies to ensure they get the best possible start to life.

“Research indicates that the majority of children with Fragile X Syndrome make real advances when they regularly access the right early intervention services,” Senator McLucas said.

“That is why it is so important that these children get the best possible start in life and why our government is providing eligible families up to $12,000 to access early intervention services they can choose themselves.”

The month of July provides an opportunity to raise awareness about Fragile X Syndrome (FXS), a condition that affects one child born every week in Australia.

Fragile X Syndrome is the world’s most common cause of inherited intellectual disability and affects many aspects of a child’s early development including speech, communication and behaviour.

Senator Jan McLucas said it is important for the community to work together to create a more inclusive society that fully embraces all people, including those with Fragile X Syndrome.

“Today is an opportunity for the broader community to learn more about Fragile X Syndrome and show support for people living with the condition, their families and carers,” Senator McLucas said.

According to Mr John Kelleher, President of the Fragile X Association of Australia, Better Start will help thousands of Australian children reach their full potential.

“The Australian Government’s generous investment will provide an invaluable helping hand for children and families affected by FXS.”

“The Better Start initiative gives families with children up to six years of age with Fragile X funding to access early intervention services,” Mr Kelleher said.

“This is a great benefit, as these services really help children with Fragile X to reach their full potential.”

“The funding allocation also represents an important step forward in raising awareness, and therefore increased diagnosis and education, of Fragile X Syndrome in the wider community,” he said.

Eligible families could register to access funding of up to $12,000 – up to a maximum of $6,000 in any one financial year – for early intervention services and therapies including speech pathologists, audiologists, occupational therapists, physiotherapists, orthoptists and psychologists.

Children who have been diagnosed with cerebral palsy, Down syndrome, Fragile X Syndrome, and moderate or severe vision or hearing impairments including deafblindness, under the age of six years, will be eligible.

Families will have until their child turns seven to use the early intervention funding.

To help support children living in regional, rural and remote communities, the Government is delivering an extra one-off payment of $2,000 to help meet the higher costs of accessing services away from home.

Registrations opened to families on 1 July.

Families can find out more by calling Carers Australia 1800 242 636 or downloading an information brochure from www.fahcsia.gov.au/betterstart.

For more information about Fragile X Syndrome, visit the Fragile X Association of Australia’s website www.fragilex.org.au or call 1300 394 636.