The Fragile X Alliance Clinic
The Fragile X Alliance Clinic
The Fragile X Alliance Inc is a non-profit organisation whose mission statement is to promote education and research as well as disseminate information and new findings about fragile X syndrome.
The Fragile X Alliance Clinic was established in April 1998 to meet the specific needs of affected individuals, their families and thre carers. We have now seen over 400 children and adults of all ages with either the full or premutation throughout Australia & New Zealand.
- Children & Adults
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 are also seen for broader issues including medical and allied health management, counselling, lifestyle issues, provision of information, monitoring of progress and follow-up.
Our Services
For an appointment or further information please contact us at the Fragile X Alliance Clinic on (03) 9528 1910 or reception@geneticclinic.com.au
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. Issues of concern are discussed, and a plan laid out to implement recommended strategies.
A multidisciplinary assessment is usually advised, depending on each individual’s needs. This involves seeing several allied health professionals, each of whom have a special interest and experience with FXS. Recommended allied health practitioners include optometrist, audiologist, speech and language therapist, occupational therapist and behavioural and/or educational psychologist.
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.
We regularly conduct education programs for families, professionals and support groups throughout Australia and internationally.
We are actively involved with research and education with the aim of improving the quality of care available to people with FXS.
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
- Optometry
- Audiometry
- Genetic counselling and support
- Links to parent support groups throughout Australia
A medical consultation includes 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.
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. A typical multidisciplinary assessment involves a medical consultation as described and the following.
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 our 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 sees patients for private consultation at the Medicare rebate level.
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.
All staff are actively involved with research which will serve to improve the quality of care available to people with FXS.
- Attending the Clinic
Things to do to attend an FXA Multidisciplinary Clinic
BEFORE attending your consultation
Pre-clinic paperwork (which will be sent to you)
The Clinic Session
The multidisciplinary clinic is run (generally) on the last Friday of the month. It starts at 1pm and goes until about 4pm. This clinic consists of:
- Speech Therapy with Felicia Schmaman
- Psychology with Astra King
- Occupational Therapy with Debbie Isaac
Due to the type of assessments undertaken, the clinic cannot be bulk-billed. Cost: $660.
This can be paid for in a number of ways:
- Some may be claimable by Medicare
- If you have private health insurance with extras, a percentage of the cost can be reimbursed to you following submission of a claim
- If you receive funding from any other source, you are advised to discuss the possibility of gaining funding from this body prior to attending the clinic
- Thanks to the generosity of the Fragile X Association of Australia (FXAA), a small number of our patients are funded by them. To be eligible for this, you must also be a member of the FXAA, which is a small annual fee (financial year) of $25. It is important for you to notify Carmel that you are a member to ensure Carmel can explore the possibility of receiving funding from FXAA.
If you still have problems obtaining funding, please speak to Carmel Pierias or Dr Jonathan Cohen on (03) 9528 1910.
After your Session
Following the multidisciplinary clinic, the team will assemble their reports.
These consist of a summary of topics discussed at the clinic, recommendations on where/who to go to from here and any other pointers.
Hopefully within 3 weeks of the clinic, you will receive a copy of:
- Clinic case summary
- OT report
- Speech report
- Psych report
- Audiology report
- Optometry report
- IQ (if done)
It is important you read over these reports and begin implementing the proposed techniques. If you are not travelling interstate or internationally, you will be due for a review appointment with Dr Jonathan Cohen approximately one month following the clinic. Here, Dr Jonathan will go over the reports and discuss any remaining questions you may have about any of the reports.
Depending on the developmental stage/environment and recommendations made by the team, it is suggested you review all of these appointments every 2 years. This will allow the team to continue to provide up-to-date and appropriate care for families with Fragile X Syndrome.
Accomodation & Transport
Hotels / motels close to clinic
There are many great places to stay in this area, which is well known as a tourist destination. Here are three options which are central to most things, with easy access to public transport.
- Novotel 16 The Esplanade, 3182 ST Kilda, Melbourne, VIC, Australia Tel : (+61 3) 9525 5522 Website
- Carnegie Motor Inn 1102 Dandenong Rd, Carnegie 3163, Melbourne, VIC, Australia Tel : (+ 61 3) 9568 5422 Website
Transport
It’s easiest to get to the clinic by car or taxi. Google maps or GPS is a great way to find your way around.
There is free parking located on site.
To find out about public transport, go to Public Transport Victoria’s Journey Planner. Just type in the address of where you are, and where you want to go. Try it out, it’s very easy
- CLINICAL TEAM
Meet our highly qualified Fragile X Alliance Clinical team
Dr Jonathan Cohen
MBBS, FRACGP, FACTM, MFM
Medical Director
Professional Biography
Dr Jonathan Cohen MBBS, FRACGP, FACTM, MFM holds a Postgraduate Masters Degree in Family Medicine, Adjunct Senior Research Officer with the Centre for Developmental Disability Health Victoria at Monash University Department of General Practice and President of the Fragile X Alliance Inc. He is involved with numerous research projects, the author of multiple articles for medical, allied health journals and the lay press and presents regularly throughout Australia and internationally on FXS.
Beverly Sher
BA (SP&H), ATCL, LTCL
Clinic Co-ordinator
Professional Biography
Beverly Sher BA (SP&H), ATCL, LTCL co-ordinates the Fragile X Alliance Clinic and assists with administration and funding for clients. She is a Speech Pathologist as a well as a qualified Drama teacher. She uses drama extensively in her therapy across all ages and has found it to be an especially useful tool within the fields of pragmatic disorders and social skill training.
Astra King
BA (Disability Studies) Hons, MAPS
Psychologist
Professional Biography
Astra King BA (Disability Studies) Hons, MAPS, brings tremendous neurodevelopmental experience from her work with disability and attention deficit disorders.
Debbie Isaac
B.App.Sci (OT), AccOT
Occupational Therapist
Professional Biography
Debbie Isaac B.App.Sci (OT), AccOT has over 20 years experience with intellectually disabled children and adults in hospital, community settings, and private practice, special developmental schools and early intervention programs. She is client and family centred in her approach and works on a wide range of areas including daily living skills, motor skills, hobbies and vocational options.
Beverley Kadish
BSc (OT)
Occupational Therapist
Professional Biography
Beverley Kadish BSc (OT), with specialisation in Neurodevelopmental Therapy and Sensory Integration, has over 20 years experience. She has worked in a variety of settings in South Africa and Australia and is currently in private practice. Her special interests include Sensory Processing Disorders, Autism Spectrum Disorders, Fragile X and school readiness.
Felicia Schmaman
M Ed, BA, BA (Sp&H) Rand
Speech Pathologist
Professional Biography
Felicia Schmaman M Ed, BA, BA (Sp&H) Rand has over twenty years of experience in children with developmental disorders and is one of the few practitioners in Australia offering auditory integration training.
Peter Altidis
B App Sc, Dip Aud
Audiologist
Professional Biography
Peter Altidis B App Sc, Dip Aud, offers a broad range of audiological assessments including educational evaluations. As both a speech therapist and audiologist, he brings his expertise in both these areas to the assessment process.
Rashelle Cohen
B Sc (Optom)
Optometrist
Professional Biography
Rashelle Cohen B Sc (Optom), B Mus is a behavioural optometrist with great expertise in both assessment and vision therapy. Having been a clinical tutor at the Victorian College of Optometry and clinician at the Low Vision Institute, she is now very active in the area of paediatric optometry and vision therapy, working with children with learning disabilities, with a particular interest in FXS.
Nikki Gelfand
PostGradDip(GC) FHGSA
Genetic Counsellor
Professional Biography
Nikki Gelfand, BSc PostGradDip(GC) FHGSA, is a HGSA board certified genetic counsellor with over 10 years experience in clinical practice both locally and overseas. She has a broad depth of knowledge in genetic counselling theory and practice, focusing mainly on reproductive and pregnancy based genetic counselling.
She also has experience in specialty fields of genetic counselling such as cancer genetics and neurogenetics and currently also works at a large, public genetics service in Melbourne.