Financial support

Caring for a child with Tay-Sachs or Sandhoff disease may impact your financial situation. This could be due to either increased expenses to meet your child or loved one’s needs, taking time away from the workforce to care for them, or a combination of both.

Even if you are in a financially secure and stable position when your child or loved one receives their diagnosis, it is still important to investigate your options for financial support.

Although it may not feel urgent when the diagnosis is received, it is important to do this as soon as possible after diagnosis to ensure that financial stress is avoided, and you can focus on loving and caring for your child or loved one.

Government support

Centrelink provides a range of payments and services.

You may wish to make an appointment with a Centrelink social worker to share information about your unique situation and what kind of government supports might be available to you. This will give you an opportunity to share your story.

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A selection of payments and services is listed below, along with a website you can visit for more information.

Medicare and Private Health Insurance

In Australia, the public health system, Medicare, covers most Australian residents for health care. However, Medicare does not cover everything, and private health insurance may be able to provide a wider range of health care options and more comprehensive cover.

For example, Medicare does not cover the cost of emergency transport or other ambulance services. You may wish to investigate the options available in your state or territory for covering you for these types of services. Some governments cover these costs for some or all of their residents, but others do not.

If you already have private health insurance, you may wish to review your policy to understand what you might be covered for. Remember that there are often clauses relating to pre-existing conditions, and that waiting periods may apply when first signing up or when increasing your level of cover.

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You can find out more information at the following websites.

Seeking financial advice

Seeking financial advice from a qualified financial adviser or financial counsellor can help you understand your unique situation in more detail, and may help you plan for the future.

You may wish to seek advice or support on:

  • managing your mortgage or rental payments
  • paying bills and other living expenses
  • exploring financial hardship options
  • managing any debts you may have
  • insurance

The Australian Government’s Money Smart Website can be a useful place to start, and includes information on financial advisers and financial counsellors:

Your workplace may also provide access to a workplace advocate or union, which may be able to support you to negotiate changes in work hours or conditions.

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