Here is a list of services that are available and may be useful for individuals or parents with children with X & Y chromosome variations in Australia.
We have a facebook group for individuals who are affected by X & Y chromosome variations, their parents or carers; living in Australia or NZ. Click here to join our confidential Facebook group.
National funding and additional support
Health care card (Centrelink): All children and many adults with an X & Y chromosome variations should be eligible for a health care card. This will give access to cheaper health care services and less expensive medications and also other benefits eg. reduced costs into theme parks. There are two types of health care cards, one is not means tested and is based on a child or individuals diagnoses and the other one is a low income health care card available to adults and is means tested. Applications need to be completed in conjunction with a health care professional. Find out the application process.
Disability support pension: Financial help if an individual has a permanent physical, intellectual or psychiatric condition that stops them from working full-time. Eligible people must be aged between 16 years old and pension age. There are strict guidelines for eligibility.
Carers Allowance (Centrelink): This is available to parents whose children have increased needs and additional costs associate with this e.g. their child requires Physiotherapy, Speech Therapy, Occupational Therapy, Psychologist etc. A discussion with Centrelink is required before application forms are available which need to be filled out in conjunction with the child’s health care professional usually a GP or Paediatrician. Find out more on the application process.
Carers Payment (Centrelink): Provides financial help to people who are unable to work in substantial paid employment because they provide full time daily care for someone with a severe disability or medical condition. This is income tested. This may be an option for those with a child who is severely affected. It’s best to read the eligibility criteria and the following information.
Companion Card (Available in Every State and Territory): Every Australian State and Territory offers a nationally recognised Companion Card program for people with significant and permanent disability who require attendant care support to safely access community activities and venues.
The Companion Card allows a cardholder’s companion or support person free entry to participating venues and events, including cinemas, museums, sporting events, zoos, theme parks, and other community activities.
Some event organisers and ticketing providers may also offer accessible or discounted ticketing arrangements for higher-cost events such as concerts, festivals, and international touring productions. In many cases, cardholders are required to contact the provider’s accessible ticketing service prior to purchase.
Eligibility criteria and application processes vary slightly between States and Territories. Further information is available through your State or Territory Companion Card program.
Chronic Disease Management Plan (Medicare): This allows for a Medicare rebate for a maximum of five allied health services per patient each calendar year from eligible providers. The GP needs to approve this but it is a great help with the costs of allied health and early intervention services. Services that this may be used for include, physiotherapy, speech therapy and occupational therapy. Find out more on what is involved in accessing this service.
Mental Health plan (Medicare): Your GP also needs to approve this but it allows you up to 10 subsidised (in some cases fully subsidised) sessions with a Psychologist or trained Occupational Therapist , who are fantastic with working with individuals and children who suffer from anxieties, depression, emotion dysfunction, behavioural challenges or are emotionally struggling or who may need further assessments. Any parent can also get a separate Mental Health Plan if they are struggling with the emotional needs of bringing up a child with special needs. Find out more.
National Disability Insurance Scheme (NDIS): The NDIS is designed to provide holistic supports for individuals with significant disability, regardless of diagnosis. While a diagnosis may assist in establishing permanence, the Federal Court has confirmed that the primary focus of the NDIS is the functional impairments a person experiences and the support needs arising from those impairments.
Sex chromosome variations may result in intellectual, cognitive, neurological, sensory, or physical impairments, all of which may fall within the categories of impairment recognised under the NDIS Act.
Supports which address needs arising from impairments that meet the access criteria, either as a permanent Disability under s24 of the NDIS Act or under the Early Intervention provisions in s25, may be funded for eligible children and adults who gained access before 65 years of age.
Early intervention supports may assist children to build developmental and functional capacity skills and may also apply to adults where supports are likely to maintain functional capacity, reduce future support needs, or improve independence and participation.
There is a significant amount of information available about the NDIS, and the process can sometimes feel overwhelming for families and individuals navigating disability supports for the first time. AXYS can help provide guidance and support throughout the process, including identifying functional impairments, understanding supporting evidence, and navigating access and review processes.
AXYS has also assisted families through Tribunal review matters and has an NDIS information page available here. The NDIS website contains detailed information regarding eligibility, access, planning, and supports available under the Scheme. Find out more.
Thriving Kids: A new disability support pathway for children with mild to moderate support needs is currently being developed. At this stage, AXYS is still seeking further information regarding how children with Sex Chromosome Variations may be captured within the proposed pathway, and whether members of our community will continue to qualify for support through the NDIS.
As further information becomes available, AXYS will provide updates and guidance to families and individuals within our community. Please check back later for updates.
Healthy Male (Previously known as Andrology Australia): The centre for male reproductive health in Australia, have a special interest in Klinefelter syndrome/XXY and related variants for adults in terms of management and fertility advice. Find out more information.
Professional Support
General Genetics Clinics: Find your closest clinic in Victoria
The Genetic Support Network Victoria (GSNV): Is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions in Victoria. They are a wealth of information, for more information you can visit their website.
Local Community Health Centres: They are often your first point of call to get free allied health services involved. This is a free service in which your child can access many allied health services. All you need to do is find the nearest Local Community Health Centre (usually attached to your nearest local Hospital) and ask to make a booking.
Maternal and Child Health Nurse: If you find the right one your Child and Maternal Health Nurse can be an enormous support and get you in contact with the right services. They can do a Brigance assessment on your child to ensure they are at the level they should be at for their age, if they are not the maternal and child health nurse can do an ECIS referral and guide you with the best support networks available to you.
Disability Support (Anglicare): If you are yet to get adequate funding for your child’s care needs Anglicare can offer funding options to help pay for allied health services that are needed. You can ring your local Anglicare office and make a referral. It’s really important to be specific in what you want and need. There is a wait list of approximately 2-3 months depending on the area you are in but well worth getting in a referral, you can always cancel it if you don’t need it. Look up and ring your local Anglicare office to discuss your options.
Respite: If you feel that you are really struggling with the care needs of your child and that you never get a break and its impacting on you mentally and emotionally Alfred Health Carers Service may be able to help you with respite care in which they come to your home and you can go out or have a sleep, call 1800 052 222 to discuss what they can offer you. Make sure you don’t sugar coat what is going on as they need to know exactly how you are struggling so they can help you in the best way possible.
Parenting Plus Program (QEC): This is a 9 week home program in which early childhood and health professionals work closely with you to identify parenting strengths and difficulties. They work with you around your child’s behaviour, undesirable sleep patterns, feeding issues and many more things. This is an invaluable free program if you need guidance in managing certain things around your children. Phone the Queen Elizabeth Centre on 95492777.
Dental: Due to the increased issues with children with an X & Y chromosome variation, it’s really important that they see the dentist every 6 months as soon as they start getting teeth. Currently certain children/families are covered by the Child Dental Benefit Scheme which allows for up to $1,000 of dental work a year. It currently covers; general checks, x-rays, extractions, fillings, root canals etc. The Government are in the process of changing this. Your dentist will know the ins and outs of the changes but it’s great to take advantage of these free dental benefits while they last.
Concerns at Kindergarten (Pre-schools Field Officer): If you have any concerns about your child during kindergarten ask the teachers if you can get the pre-school field officer out to interact and assess your child. They spend several hours in the kinder and will observe and interact with your child determining if there are any evident issues and concerns eg. anxiety, aggression, learning concerns, ability to interact with others etc. They have a discussion with the parent/s and kinder teacher at the end of this lengthy time and talk about your concerns and their observations. They write a detailed plan for parents and also for the kinder teachers to follow to combat any of these issues. It is important to get onto this early as you can work on any concerns before your child starts school. They are a fantastic resource with a wealth of knowledge. They can also help you in the right direction for funding for an aide if you and the kinder teachers feel it is necessary.
Kindergarten Inclusion Support Package: If you feel your child will really struggle at 4 year old kindergarten and will require additional supports the KIS program is funding for an additional aid which allows the teachers to spend more one on one time with your child. Often if you find a kindergarten that runs a 3 year old program and a 4 year old program they can better support you in this application, but this is not essential. The objective of the kindergarten inclusion support package is to build the capacity of funded kindergartens to support the access and participation for children with a disability and/or complex medical needs. It’s in addition to the existing resources available to the kindergarten staff. The application is made in conjunction with the early childhood teacher and the parents.
Primary school selections: Have a look at a variety of schools; discuss your child’s potential needs with the schools eg. Anxiety, attention concerns, learning needs etc and get a gauge from their response as this will often will give you a good guide on their experience dealing with children with special needs. Do they already have funding for support aides? Do they have programs established for children who are struggling with anxiety, aggression, and other abnormal behavioural patterns? What programs do they have in place for children with learning difficulties? Look at the size of the school and what extracurricular activities they have to suit your child.
After hours doctor: If your ever concerned about yours or your child’s health out side of your normal GP hours and feel that you or they need to see a GP but not go to ED ring National Home Doctor Service on 137425 or visit. They come to your house, and bulk bill all patients. They carry starter packs of common medication and send a report to your GP the next day.
General Genetics Clinics: Find your closest clinic in Metropolitan New South Wales or Regional New South Wales
Local Community Health Centres: They are often your first point of call to get free allied health services involved. This is a free service in which your child can access many allied health services. All you need to do is find the nearest Local Community Health Centre (usually attached to your nearest local Hospital) and ask to make a booking.
Maternal and Child Health Nurse: If you find the right one your Child and Maternal Health Nurse can be an enormous support and get you in contact with the right services. They can do a Brigance assessment on your child to ensure they are at the level they should be at for their age, if they are not the maternal and child health nurse can do an ECIS referral and guide you with the best support networks available to you.
Dental: Due to the increased issues with children with an X & Y chromosome variation, it’s really important that they see the dentist every 6 months as soon as they start getting teeth. Currently certain children/families are covered by the Child Dental Benefit Scheme which allows for up to $1,000 of dental work a year. It currently covers; general checks, x-rays, extractions, fillings, root canals etc. The Government are in the process of changing this. Your dentist will know the ins and outs of the changes but it’s great to take advantage of these free dental benefits while they last.
After hours doctor: If your ever concerned about yours or your child’s health out side of your normal GP hours and feel that you or they need to see a GP but not go to ED ring National Home Doctor Service on 137425 or visit. They come to your house, and bulk bill all patients. They carry starter packs of common medication and send a report to your GP the next day.
General Genetics Clinics: Find your closest clinic in Queensland
Local Community Health Centres: They are often your first point of call to get free allied health services involved. This is a free service in which your child can access many allied health services. All you need to do is find the nearest Local Community Health Centre (usually attached to your nearest local Hospital) and ask to make a booking.
Maternal and Child Health Nurse: If you find the right one your Child and Maternal Health Nurse can be an enormous support and get you in contact with the right services. They can do a Brigance assessment on your child to ensure they are at the level they should be at for their age, if they are not the maternal and child health nurse can do an ECIS referral and guide you with the best support networks available to you.
Dental: Due to the increased issues with children with an X & Y chromosome variation, it’s really important that they see the dentist every 6 months as soon as they start getting teeth. Currently certain children/families are covered by the Child Dental Benefit Scheme which allows for up to $1,000 of dental work a year. It currently covers; general checks, x-rays, extractions, fillings, root canals etc. The Government are in the process of changing this. Your dentist will know the ins and outs of the changes but it’s great to take advantage of these free dental benefits while they last.
After hours doctor: If your ever concerned about yours or your child’s health out side of your normal GP hours and feel that you or they need to see a GP but not go to ED ring National Home Doctor Service on 137425 or visit. They come to your house, and bulk bill all patients. They carry starter packs of common medication and send a report to your GP the next day.
General Genetics Clinics: Find your closest clinic in Western Australia
Genetic Services of Western Australia: Genetic Services of Western Australia (GSWA) is a state-wide service providing clinical genetic services in Western Australia. GSWA provides a comprehensive state-wide diagnostic and confidential counselling service in clinical genetics.
Find out more.
Local Community Health Centres: They are often your first point of call to get free allied health services involved. This is a free service in which your child can access many allied health services. All you need to do is find the nearest Local Community Health Centre (usually attached to your nearest local Hospital) and ask to make a booking.
Maternal and Child Health Nurse: If you find the right one your Child and Maternal Health Nurse can be an enormous support and get you in contact with the right services. They can do a Brigance assessment on your child to ensure they are at the level they should be at for their age, if they are not the maternal and child health nurse can do an ECIS referral and guide you with the best support networks available to you.
Dental: Due to the increased issues with children with an X & Y chromosome variation, it’s really important that they see the dentist every 6 months as soon as they start getting teeth. Currently certain children/families are covered by the Child Dental Benefit Scheme which allows for up to $1,000 of dental work a year. It currently covers; general checks, x-rays, extractions, fillings, root canals etc. The Government are in the process of changing this. Your dentist will know the ins and outs of the changes but it’s great to take advantage of these free dental benefits while they last.
After hours doctor: If your ever concerned about yours or your child’s health out side of your normal GP hours and feel that you or they need to see a GP but not go to ED ring National Home Doctor Service on 137425 or visit. They come to your house, and bulk bill all patients. They carry starter packs of common medication and send a report to your GP the next day. Enter your content.
General Genetics Clinics: Find your closest clinic in South Australia
Local Community Health Centres: They are often your first point of call to get free allied health services involved. This is a free service in which your child can access many allied health services. All you need to do is find the nearest Local Community Health Centre (usually attached to your nearest local Hospital) and ask to make a booking.
Maternal and Child Health Nurse: If you find the right one your Child and Maternal Health Nurse can be an enormous support and get you in contact with the right services. They can do a Brigance assessment on your child to ensure they are at the level they should be at for their age, if they are not the maternal and child health nurse can do an ECIS referral and guide you with the best support networks available to you.
Dental: Due to the increased issues with children with an X & Y chromosome variation, it’s really important that they see the dentist every 6 months as soon as they start getting teeth. Currently certain children/families are covered by the Child Dental Benefit Scheme which allows for up to $1,000 of dental work a year. It currently covers; general checks, x-rays, extractions, fillings, root canals etc. The Government are in the process of changing this. Your dentist will know the ins and outs of the changes but it’s great to take advantage of these free dental benefits while they last.
After hours doctor: If your ever concerned about yours or your child’s health out side of your normal GP hours and feel that you or they need to see a GP but not go to ED ring National Home Doctor Service on 137425 or visit. They come to your house, and bulk bill all patients. They carry starter packs of common medication and send a report to your GP the next day.
General Genetics Clinics: Find your closest clinic in Northern Territory
Local Community Health Centres: They are often your first point of call to get free allied health services involved. This is a free service in which your child can access many allied health services. All you need to do is find the nearest Local Community Health Centre (usually attached to your nearest local Hospital) and ask to make a booking.
Maternal and Child Health Nurse: If you find the right one your Child and Maternal Health Nurse can be an enormous support and get you in contact with the right services. They can do a Brigance assessment on your child to ensure they are at the level they should be at for their age, if they are not the maternal and child health nurse can do an ECIS referral and guide you with the best support networks available to you.
Dental: Due to the increased issues with children with an X & Y chromosome variation, it’s really important that they see the dentist every 6 months as soon as they start getting teeth. Currently certain children/families are covered by the Child Dental Benefit Scheme which allows for up to $1,000 of dental work a year. It currently covers; general checks, x-rays, extractions, fillings, root canals etc. The Government are in the process of changing this. Your dentist will know the ins and outs of the changes but it’s great to take advantage of these free dental benefits while they last.
After hours doctor: If your ever concerned about yours or your child’s health out side of your normal GP hours and feel that you or they need to see a GP but not go to ED ring National Home Doctor Service on 137425 or visit. They come to your house, and bulk bill all patients. They carry starter packs of common medication and send a report to your GP the next day.
General Genetics Clinics: Find your closest clinic in Tasmania
Local Community Health Centres: They are often your first point of call to get free allied health services involved. This is a free service in which your child can access many allied health services. All you need to do is find the nearest Local Community Health Centre (usually attached to your nearest local Hospital) and ask to make a booking.
Maternal and Child Health Nurse: If you find the right one your Child and Maternal Health Nurse can be an enormous support and get you in contact with the right services. They can do a Brigance assessment on your child to ensure they are at the level they should be at for their age, if they are not the maternal and child health nurse can do an ECIS referral and guide you with the best support networks available to you.
Dental: Due to the increased issues with children with an X & Y chromosome variation, it’s really important that they see the dentist every 6 months as soon as they start getting teeth. Currently certain children/families are covered by the Child Dental Benefit Scheme which allows for up to $1,000 of dental work a year. It currently covers; general checks, x-rays, extractions, fillings, root canals etc. The Government are in the process of changing this. Your dentist will know the ins and outs of the changes but it’s great to take advantage of these free dental benefits while they last.
After hours doctor: If your ever concerned about yours or your child’s health out side of your normal GP hours and feel that you or they need to see a GP but not go to ED ring National Home Doctor Service on 137425 or visit. They come to your house, and bulk bill all patients. They carry starter packs of common medication and send a report to your GP the next day.
General Genetics Clinics: Find your closest clinic in ACT
Local Community Health Centres: They are often your first point of call to get free allied health services involved. This is a free service in which your child can access many allied health services. All you need to do is find the nearest Local Community Health Centre (usually attached to your nearest local Hospital) and ask to make a booking.
Maternal and Child Health Nurse: If you find the right one your Child and Maternal Health Nurse can be an enormous support and get you in contact with the right services. They can do a Brigance assessment on your child to ensure they are at the level they should be at for their age, if they are not the maternal and child health nurse can do an ECIS referral and guide you with the best support networks available to you.
Dental: Due to the increased issues with children with an X & Y chromosome variation, it’s really important that they see the dentist every 6 months as soon as they start getting teeth. Currently certain children/families are covered by the Child Dental Benefit Scheme which allows for up to $1,000 of dental work a year. It currently covers; general checks, x-rays, extractions, fillings, root canals etc. The Government are in the process of changing this. Your dentist will know the ins and outs of the changes but it’s great to take advantage of these free dental benefits while they last.
After hours doctor: If your ever concerned about yours or your child’s health out side of your normal GP hours and feel that you or they need to see a GP but not go to ED ring National Home Doctor Service on 137425 or visit. They come to your house, and bulk bill all patients. They carry starter packs of common medication and send a report to your GP the next day.
Support Groups
New Zealand has previously had several dedicated XXY support groups and advocacy networks working to connect and support individuals and families living with Klinefelter syndrome/XXY. However, due to limited resources and the relatively small size of the New Zealand community, many formal support activities have become difficult to maintain.
One New Zealand-based Facebook support group remains active, although membership numbers and community activity levels remain relatively small. The NZ XXY Community Facebook group currently has approximately 84 members and is available here.
Rare Disorders New Zealand also maintains a community listing for XXY’ers and chromosomal disorder support groups here: https://raredisorders.org.nz/groups/xxyers-chromosomal-disorder/ However, the linked Facebook profile does not appear to have posted since 2024. Records available from 2022 indicated that only 93 individuals had been formally diagnosed with 47XXY in Aotearoa/New Zealand, highlighting the challenges smaller communities can face in sustaining broader support and advocacy networks.
Australian X & Y Spectrum Support (AXYS) was saddened by the reduction in local support options for our New Zealand neighbours and warmly welcomes individuals and families from across the pond to participate in our support group and broader community networks. AXYS remains committed to providing peer support, advocacy, shared information, and community connection for individuals and families living with X and Y chromosome variations throughout Australia and New Zealand.
Support: AXYS USA
AXYS USA aims to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives. genetic.org is a great website with numerous resources for all sex chromosome anomalies including:
– Family information kits and brochures
– Tools for genetic counsellors and other professionals
– Webinars
Support: KSA UK
KSA offer support and information to all affected by, or having an interest in, Klinefelter Syndrome. Their website ksa-uk.net has lots of information:
– Information for employers, teachers, social workers and medical professionals
– Information on upcoming activities
– Lots of downloadable resources.
Living with XXY
Ryan Bregante was born with Klinefelter Syndrome also known as 47XXY. He provides a positive insight to what it’s like living his life from a real point of view. He works hard to help educate people about Klinefelter syndrome from a positive perspective and helps to empower people to spread the word and educate others.
He has a dedicated Facebook group and website, find out more:
Facebook Group: Klinefelter’s Syndrome/X and Y variations support group.
Website: www.livingwithxxy.org
My XXY | Chromodiversity™ Support
My XXY | Chromodiversity™ Foundation is a United States non-profit organisation founded in 2020 to support children, individuals and families affected by genetic and developmental differences. While originally focused on XXY/Klinefelter syndrome, the organisation has expanded its work to support a broader range of genetic variations and developmental needs.
The organisation introduced the term “chromodiversity” to encourage a shift in how genetic differences are understood — promoting acceptance, inclusion and human diversity rather than viewing all genetic differences solely through a medicalised lens. Similar to concepts such as biodiversity and neurodiversity, chromodiversity highlights the natural diversity found within human DNA.
My XXY | Chromodiversity™ provides educational resources, family support tools, podcasts, peer connection opportunities and community programs designed to help children and families navigate diagnosis, education, development and wellbeing with greater confidence and support.
The organisation also advocates for respectful and inclusive language surrounding genetic differences and works to improve awareness, reduce stigma, and increase access to practical early support and intervention services for families worldwide.
AXYS has proudly supported My XXY | Chromodiversity™ since 2022 and recognises the value of collaborative international efforts that improve education, awareness, peer connection and support pathways for people and families affected by sex chromosome variations and related genetic differences.
To learn more about My Chromodiversity™ or to access their resources, please visit: https://www.chromodiversity.org/
Klinefelter Syndrome Australia Inc.
Klinefelter Syndrome Australia Inc. was a Queensland-based charity supporting individuals diagnosed with XXY/Klinefelter syndrome. The organisation aimed to improve access to specialised multidisciplinary support and increase awareness and education within the health, education, and broader community sectors. The group previously organised local community catch-ups within Queensland and provided phone and email support services.
While the charitable organisation is no longer actively operating, the community Facebook group remains accessible and still contains a range of helpful resources, shared experiences, and historical information. Some community members also continue to engage within the group.
Facebook: https://www.facebook.com/KSsyndrome/
XYY Syndrome
XYY Syndrome Association Australia inc. is a registered charity located in Western Australia. The main purpose for the Association is as follows:
The association works towards creating awareness for XYY Syndrome by obtaining and providing the latest research for XYY families and the community. Networking with government services, medical specialists, general practitioners and educators to create better understanding for XYY Syndrome. Rare Syndrome recognition for XYY Syndrome within State and Federal Government and educational systems. They offer email support.
Website: https://xyyaustralia.org/
Facebook: https://www.facebook.com/xyyaustralia.org/
Triple X Syndrome
Triple X Australia run a facebook group called Triple X & Trisomy X Support Group Australia. This is a closed group for Australian girls/women that have Triple X (Trisomy X) or Parents of girls that have Triple X (TrX). This is an informative and sociable group which aims to support members through this journey and help raise awareness of this syndrome in the general Australian public. Triple X Australia also offer phone and email support.
Facebook: Triple X & Trisomy X Support Group Australia
Email: trxaust@gmail.com or TrXAUS@groups.facebook.com
