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Just between us: Financial challenges of TSC

In each edition of Reach Out, we publish the collective wisdom of TSC families from around Australia on a particular topic in a section called ‘Just between us’. This article on the financial challenges of living with TSC was published in the April 2015 edition of Reach Out.

Remember that, like all information in Reach Out, this page represents the opinions of the author(s) and not official pronouncement of Tuberous Sclerosis Australia. This information should not be used without first seeking medical advice.

Read about the financial assistance available to help people with TSC

For us not much is available. We only have access to the carers allowance and it doesn’t cover a lot. Our daughter isn’t “bad enough” to get the carers payment. Our struggle is more needing to take time off work to take her to appointments and not having any leave to cover the loss of wages. We do have access to funding through Amaze (previously Autism Victoria) for her Autism which has been great but not all children with Tuberous Sclerosis are diagnosed with autism. The early intervention is a great help but stops when they get to primary school. I haven’t applied for other grants as I don’t think our daughter would be approved as she isn’t considered to be on the bad end of the scale. Her difficulties are more intellectual.

What I think is sad is that no one tells you about services that are available to help. You have to find them yourself – like we don’t have enough to do! And the help seems to stop once they hit primary school and age seven. Correct me if I’m wrong as I’d love to get our daughter more help if I could

Abby, Victoria

My daughter with TSC is an adult now, but I wish I had a list of the financial assistance that was available when she was younger. We have found that there is much more help for children and those with a more severe disability. There doesn’t seem to be as much help for ongoing medical expenses, which can really

add up. Where services are not provided in hospitals (more often than not for us!) there is considerable expense involved in going to private doctors and private imaging centres. The Medicare Safety Net, which is per calendar year, often doesn’t work out well for us due to long waits for specialist appointments.

Sue, Western Australia

We get a careers payment which doesn’t cover costs of our son’s therapy’s let alone lost wages for appointments. We miss out on any other help due to being diagnosed after the age of six. I got our son on a care plan which gets us five free therapy sessions a year. Then it’s the decision of which therapy to get free and I have to reapply for the care plan every year! I believe because it’s a life long diagnosis the care plan should be life long.

Now that I know the care plans yearly I will do the paperwork in January holidays each year so it doesn’t cut into work or school time. Other than that I’ll just keep pestering for more help and keep researching for information.

Peta, Queensland

We receive both the carer payment and allowance. We have also gratefully received assistance from the Smile Foundation (now part of Variety NSW), Variety and the Steve Waugh Foundation.

Linda, New South Wales

We got the carer allowance at the beginning and also got the carer adjustment payment (a one off payment if child is under seven and if it is less than two years since diagnosis). We were knocked back for carer payment initially. When we got diagnosed with an autism spectrum disorder we could get carer payment and also got the Helping Children with Autism (HCWA) funding of $12,000 for early intervention. We did use the Medicare care plan at the start for physiotherapy. We also get speech and occupational therapy through disability Queensland.

Christy, Queensland

We were knocked back twice for health care card until someone explained it was because I wasn’t showing that there was an extra amount of time caring for our son per fortnight. Once I added up therapy hours & hours doing therapy at home there was enough so it was granted. That helps us out with the costs of medication which is our biggest expense.

Therapy (Physio, speech & OT) is through Disability Services QLD & I pay for a developmental physiotherapist privately as well which the Medicare plan helps with. Our paediatrician told us about the Medicare plan but the paperwork had to come from our GP. Our GP had done before so was simple & now it has been set up it’s just a matter of getting amended each year. It doesn’t cover the full cost for me but I think that may differ based on the prescribed fees.

Fiona, Queensland

I was unable to work for six years while caring for my oldest child who has TSC and high needs while also caring for her younger sister. It is difficult for many people to understand the amount of care our children require and how this affects the careers of both parents. I could not find any suitable day care for my daughter that could support her needs. Luckily we found a fantastic inclusive pre school that she began at four years of age. When she went to school and my youngest was attending pre school I decided to go back to work. It was very difficult to find a job for 2-3 days a week with flexible hours so I could pick my children up. I am lucky that I have wonderful parents who are semi retired and can pick up the kids from two different schools as my eldest daughter attends a special needs school.

People also assume that after school care will solve this problem. It is difficult enough for my daughter to get through the whole day at school. For her to attend another two hours of care at a different place is impossible.

I think this issue is not talked about enough and most of the care for our children falls to the mother and this affects her career and her earning capacity. It is difficult for all mums to juggle work and care for their children, however when you have a child with a disability this makes it extremely difficult to work and contribute to the family’s finances.

Debbie, New South Wales

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