Having a diagnosis of Tuberous Sclerosis can impact on the financial pressures faced by the individual or their family. Additional expenses can include travel to medical appointments and hospitals, medical services, medications, equipment, therapy and education support.

TSC can also limit employment opportunities especially as parents and carers may need to limit their career advancement, undertake part time work or stop work to take care of and advocate for the person with TSC. Some people with TSC are unable to work due to intellectual disabilities or health conditions.

This article aims to provide resources that can assist with these financial challenges. There are no two TSC families with the same needs and services vary between different areas. People living with TSC and their families need to spend time understanding whether these resources are helpful in their individual circumstances. We welcome your suggestions of how to improve this information.

Managing medical and allied health care costs

Because Tuberous Sclerosis can affect so many parts of the body, costs of medical care and medicines can escalate quickly. In addition, people with complex needs can require the help of many different allied health professionals.

Some of the assistance available for these costs includes:

  • A Health Care Card can significantly reduce your medical costs, including cheaper costs of medicines. Many GPs will also bulk bill Health Care Card holders.
  • The PBS Safety Net can reduce the costs of medicines once an annual threshold has been reached. The scheme is more generous if the patient has a health care or pensioner concession card. It is possible to combine family members under the scheme. Many families find using the same pharmacy for all PBS medicines can allow the pharmacist to keep track of eligibility for safety net.
  • The Medicare Safety Net can reduce the costs of out of hospital medical services by providing a higher Medicare benefit once a certain threshold is reached each calendar year. You may need to advise Medicare of who is in your family to ensure all related expenses are included when calculating the safety net.
  • A Chronic Disease Management Plan (also called a GP Management Plan) is developed in consultation with your GP based on your individual needs. This allows the GP to spend additional time managing the complex care needs of the person with TSC. The Team Care Arrangements (TCAs) can form part of the plan and allow allied health professionals (such as occupational therapists, psychologists, physiotherapists) to bill all or part of their services to Medicare.
  • The Better Start and Helping Children with Autism (HCWA) packages provide funding for early intervention and some parent education sessions. Packages are approximately $12,000 per year for children up to age 6. Although not every child with Tuberous Sclerosis will be diagnosed with autism these packages can be accessed only with that diagnosis.
  • Patient Assisted Travel Schemes are offered in each state and territory for rural and remote patients who must travel over 100 kilometers to access specialized health care.
Federal Government Support through Centrelink

Centrelink administers a number of payments that could provide assistance to an individual with TSC or their carers. These include:

  • Carer allowance can be paid to carers of a person with a disability. The associated child disability assistance payment is paid annually to those receiving carer allowance
  • Carer payment for carers of a person with a disability who may be unable to work due to their caring role. This payment is income and assets tested.
  • Disability Support Pension is paid to people over 16 who meet specific criteria and are unable to work due to their impairment. In addition to pension payments there are other financial benefits such as assistance with rent, utilities and eligibility for the pensioner concession card.
  • Other payments such as mobility allowance and sickness allowance.

For many of these payments It can be difficult to understand Centrelink payments and many people find it helpful to visit a Centrelink customer service centre rather than rely only on phone calls.

Most of the payments require a health professional to fill in a questionnaire regarding the person with Tuberous Sclerosis. Often this is filled in by the person’s GP. There are many reasons why a person with Tuberous Sclerosis should have a supportive and knowledgeable GP and assistance with these processes is another reason.

For more information phone Centrelink on 132 717 or visit humanservices.gov.au.

Disability support

Depending on where you live and on your needs, there are many different services and organisations available to help you.

The National Disability Insurance Scheme is now the key government support. You can find out more about NDIS at www.ndis.gov.au.

Specific schemes that may be able to provide assistance include:

  • Home and Community Care – providing assistance at home with household chores, health and personal care
  • Continence Aids Payment Scheme (CAPS) – an intellectual disability as a result of Tuberous Sclerosis falls under the list of eligible neurological conditions
  • State based equipment funding, see our website for a full list of the agencies in each state.
The Companion Card

The companion card aims to remove the financial barrier for people who require a carer or companion (including a family member) to participate in community events and activities. The card provides an additional ticket for the companion at no additional cost at participating places and attractions. These include cinemas, on public transport, gymnasiums and tourist attractions.

Each state has a companion card scheme. For more information visit www.companioncard.gov.au

Not for profit and community organisations

For a specific expense related to Tuberous Sclerosis, some not for profit organisations may be able to help. Each has their own eligibility criteria and most will require the support of a health professional.

  • Variety provides several programmes that may be able to assist young people with Tuberous Sclerosis. This includes the Smile programme that can provide one off or annual funding for expenses relating to medical appointments, therapy and respite care. Contact TSA if you would like us to refer you to Variety for assistance. For more information visit www.variety.org.au/How-we-help/
  • The Steve Waugh Foundation focuses on rare diseases through their grants programme. Although Tuberous Sclerosis does not fall within their official grant guidelines, a number of TSC affected individuals have accessed funding through the foundation. For more information visit www.stevewaughfoundation.com.au

Community organisations in your local area may also be able to offer assistance.

More information
  • Carers organisations in each state can offer advice and information on financial assistance. They also offer information on requesting flexible work to accommodate your caring responsibilities, your disability or health condition. Find the Carers organization in your state through www.carersaustralia.com.au/about-us/contact/
  • The Association for Children with a Disability (VIC) publishes ‘Through the Maze’, a guide to services and support for a child with a disability and the whole family. See www.acd.org.au for more information.
  • The Association for Children with a Disability (NSW) publishes a similar resource. See https://www.acd.org.au/ for more information. Both publications include information on financial support an have been updated recently.
  • Centrelink payment finder can help to identify payments and other assistance to suit your family circumstance. To use the payment finder, see www.humanservices.gov.au/customer/payment-finder
Read how other families living with TSC have handled the financial challenges of TSC