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. Request to join our confidential Facebook group
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. Eligible people must be aged between 16years 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 eg. 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.
Early Childhood Intervention Service (ECIS): For areas that the NDIS hasn’t rolled out an Early Intervention Support Service can be accessed for children 0 to school age. ECIS support children with a disability or developmental delay from birth to school entry, and their families. These services build on opportunities for learning and development that are provided at home and through Maternal & Child Health Centres, child care and kindergarten. This is Government funded and provides allied health services on a fortnightly basis free of charge to the parents. A referral can be made by a parent, paediatrician, GP, child care professional and kindergarten Important: Some ECIS providers that you can choose from only allow you to access one or two allied health professionals; others allow you to access as many allied health professionals as needed. Make sure you choose a provider that best suits your child’s needs. Often choosing one that can get as many allied health professionals on board as possible is the best choice as gives you more options along your Childs journey. Although you have the option of changing over providers if you are not happy but there is a waitlist. Early intervention services will be phased out when NDIS is rolled out Australia wide.
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): NDIS has started rolling out in several areas across Australia; it is designed to encompass the care needs of children and individuals aged 0 to 65 years old who are living with a disability, with the aim of doing this in a holistic manner. There is a lot of information available on the NDIS, for some parents and individuals it can be a very overwhelming process, AXYS are here to help answer any questions we can and to provide guidance and support in this process. The NDIS website has a wealth of knowledge around the processes accessing the NDIS, find out more.
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.