A Better Start for Children with Disability and Fragile X
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.
Subscribe
My son was first thought to have Fragile X but it turned out to be Soto Syndrome.
Angelman Syndrome, Rett Syndrome, Prader-Willi Syndrome, Soto Syndrome and every other syndrome that causes intellectual disability (other than Down Syndrome) are explicitly excluded from this initiative.
Possibly syndromes that are prone to nystagmus, refractive errors and glue ear might scrape though on the sight and hearing impairment criteria but the devil will be in the detail long after the election.
I feel very concerned for the anxious young parents of disabled babies who are yet to discover their child does not have the right diagnosis.