A diagnosis of Tuberous Sclerosis Complex (TSC) may create financial pressures for the person living with TSC and their family. Additional expenses can include travel to medical appointments and hospitals, medical and allied health services, medications, equipment, therapy and education support.
TSC can also affect employment opportunities as parents and carers may need to limit their career advancement, reduce to part time hours or cease work to care and advocate for the person living with TSC. Some people with TSC are unable to work due to intellectual disabilities, health conditions and absenteeism due to medical and health treatment.
Below are some resources that may assist. No two TSC families have the same needs and services vary between different areas. It is important for people living with TSC and their families need to assess whether these resources are helpful and applicable for their circumstances.
Tuberous Sclerosis Complex (TSC) can affect many parts of the body which can result in escalating medical costs. Additionally, people with complex needs may require the help of allied health professionals such as occupational therapists, physiotherapists, psychologists and speech therapists.
Some of the assistance available for these costs includes:
- A Health Care Card entitles eligible holders to cheaper prescription medicines under the Pharmaceutical Benefits Scheme. Many General Practitioners (GPs) bulk bill Health Care Card holders. Other benefits may include concessions for energy costs, public transport and council rates. For further information: https://servicesaustralia.gov.au/health-care-card
- The Pharmaceutical Benefits Scheme (PBS) Safety Net provides reduced medicine costs after an annual threshold has been reached. The scheme is more generous for health care or pensioner card holders. Family members can also be included under the scheme. Many families find using the same pharmacy for all PBS medicines allows the pharmacist to keep track of eligibility for the PBS safety net. For further information: https://servicesaustralia.gov.au/pbs-safety-net-thresholds?context=22016
- The Medicare Safety Net can lower out of pocket medical costs for out of hospital services, once a certain spend threshold is reached each calendar year. A family or couple can combine their costs by registering with Medicare. For further information: https://servicesaustralia.gov.au/medicare-safety-nets
- A Chronic Disease Management Plan comprises of a General Practitioner (GP) Management Plan and is developed in consultation with a GP based on the client’s individual needs and goals. 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 to bill all or part of their services to Medicare. For further information: https://health.gov.au/internet/main/publishing.nsf/Content/mbsprimarycare-chronicdisease-pdf-infosheet
- Patient Assisted Travel Schemes are offered in each state and territory for rural and remote patients who must travel over 100 kilometers one way to access specialised health care. For further information: https://healthdirect.gov.au/travelling-to-your-healthcare-appointment
Centrelink administers a number of payments that may provide assistance to a person with TSC or their carers. These include:
- Carer Allowance can be paid to carers of a person with a disability. Carer Allowance is income tested – your and your partner’s combined adjusted taxable income must be under $250,000 a year (as at Oct 2022). The Child Disability Assistance Payment is an annual payment of $1,000 for a child with a disability under 16 years who attracts a payment of Carer Allowance for their carer. For further information: Carer Allowance: https://servicesaustralia.gov.au/carer-allowance Child Disability Assistance Payment: https://servicesaustralia.gov.au/child-disability-assistance-payment
- 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 for the carer and the person being cared for. For further information:https://servicesaustralia.gov.au/carer-payment
- Disability Support Pension is paid to people over 16 who meet specific criteria and are unable to work due to a permanent physical, intellectual or psychiatric condition. In addition to pension payments there are other financial benefits such as assistance with rent, utilities and eligibility for the pensioner concession card. For further information: https://servicesaustralia.gov.au/disability-support-pension
- Other payments such as Mobility Allowance and Sickness Allowance.
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 TSC. Often this is filled in by the person’s GP. There are many reasons why a person with TSC should have a supportive and knowledgeable GP and assistance with these processes is another reason.
For further information: phone Centrelink on 132 717 or visit https://servicesaustralia.gov.au
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 https://ndis.gov.au
Specific schemes that may be able to provide assistance include:
- Commonwealth Home Support Program – providing assistance at home with household chores, health and personal care for people aged over 65 years
- Continence Aids Payment Scheme (CAPS) – an intellectual disability as a result of TSC falls under the list of eligible neurological conditions
- Equipment funding see https://disabilitygateway.gov.au/ and https://dss.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability
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 a specific expense related to TSC, some not for profit organisations may be able to help. Each have their own eligibility criteria and most will require the support of a health professional.
- Variety the Children’s Charity provides several programmes that may be able to assist young people with TSC. Variety provides grants, scholarships, programs and events for children up to 18 years old. Financial support includes equipment, therapies and medical supplies when Government assistance is not available. Some state-based Variety charities offer an individual grant for medical expenses, therapy, etc. For further information: https://variety.org.au
- The Steve Waugh Foundation focuses on rare diseases through their grants programme. Although TSC does not fall within their official grant guidelines, a number of TSC affected individuals have accessed funding through the foundation. For further information: https://stevewaughfoundation.com.au/
- Ronald McDonald House provides accommodation for eligible families whilst their seriously ill child is undergoing hospital treatment. For further information: https://rmhc.org.au/ronald-mcdonald-houses
Community organisations and local councils in your local area may also be able to offer assistance.
- 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: https://carersaustralia.com.au/about-us/contact/
- The Association for Children with a Disability provides, a guide to services and support for a child with a disability and the whole family under the theme of ‘Through the Maze’. For further information: https://acd.org.au
- Centrelink payment finder can help to identify payments and other assistance to suit your family circumstance. To use the payment finder: https://humanservices.gov.au/customer/payment-finder