The Fragile X Alliance Clinic was established in April 1998 to meet the specific needs of families. It is currently the only FXS-specific evaluation and treatment centre in Australia, and is unique in that families and carers bring both children as well as adults to be seen.
We have now seen over 250 individuals and their families and believe that we are able to supply a level of expertise previously not available in Australia.
For children, the emphasis is on identifying the educational, behavioural and support options that will enhance family life and optimise the child’s abilities.
Adults and premutation carriers together with their families are also seen for broader issues including medical and allied health management, counselling, lifestyle issues, provision of information, monitoring of progress and follow-up.
The clinic is staffed by a multi-disciplinary, specialised team who provide the following services:
- Medical evaluation and treatment
- Psychological evaluation and treatment
- Speech and language evaluation and therapy
- Occupational evaluation and therapy
- Educational strategies
- Genetic counselling and support
- Links to parent support groups throughout AustraliaThere are two options for people attending the clinic either a medical consultation or the multidisciplinary clinic.
A medical consultation with Dr Jonathan Cohen is recommended as the first step in assessing the person. This will generally include taking a full and comprehensive history and conducting a medical examination, usually over 1 – 2 hours. This first step is necessary to exclude often-missed diagnoses (for example epilepsy, flat feet etc) and many families opt for this only depending on their needs. Issues of concern are discussed and a plan laid out to implement recommended strategies.
A multidisciplinary assessment follows on from the medical assessment and involves a number of people.In order to make things easier on families, we take special care to co-ordinate appointment times with the various clinicians and suggest accommodation for interstate visitors..
Families and carers fill out a number of detailed questionnaires sent by mail designed to both help clinicians measure a number of parameters such as behaviour, and also as an aid in clinical research.
Visits to the audiologist and optometrist follow to exclude hearing and vision problems, each requiring approximately one hour.
This is followed by psychological, speech and occupational therapy assessments, each taking approximately one hour, but conducted in one afternoon.
The team meets prior to the assessment, and again after they have drafted their assessment reports. A comprehensive multi-disciplinary report is then composed and the findings discussed in person with the family and carers as appropriate.
Any one or combination of the above services can be selected according to each person’s needs. Individualised treatment plans and follow up services are offered including regular reviews, home and school visits.
We are a privately funded clinic that relies on the generous support of individuals and organisations, although some services are partly rebatable through Medicare and private insurance.
The cost of the full multidisciplinary assessment and report is AUD$660 outside of Medicare. Funding for a limited number of sessions can be applied for by current members of the Fragile X Association of Australia. Please note that Dr Cohen fees incur an out of pocket expense above the Medicare rebate of approximately $50.
Staff regularly conduct education programs for families, professionals and support groups throughout Australia as well as internationally.
Educational supplies, resources and materials specific to FXS are available by direct or mail order.
Staff are actively involved with research and education which will serve to improve the quality of care available to people with FXS.
For an appointment or further information please contact: Carmel at the Fragile X Alliance Clinic on (03) 9528 1910