An autism diagnosis comes with many expenses. Therapy, one parent possibly leaving work, and special equipment are just the start. There are some government schemes however that exist to help parents with many of these expenses.
National Disability Insurance Scheme (NDIS)
The NDIS is rolling out gradually. In some states it has already rolled out (ACT was the first), and it is currently expanding in NSW and Victoria. To find out if it can be accessed in your location, have a look at their website.
By the end of 2019 the NDIS will have rolled out over all of Australia.
The NDIS is person-centered, which means that rather than have a set amount of funding, it is needs based. It is centered on the person with the disability. The NDIS website is a great place to start and has a lot of information, as well as instructional videos, on eligibility, funding, and planning.
There is a helpline – 1800 800 110 that operates 8am-8pm Monday to Friday
An autism diagnosis will qualify you for access to the NDIS, although you do not have to have one. Funding is based on ‘goals and aspirations’ and participants have choice and control over the support they receive. It will fund ‘reasonable and necessary’ supports.
Types of things NDIS can fund:
- therapy for your child (eg Occupational therapy, speech therapy, ABA therapy etc)
- care for your child while you go shopping or spend time with other children
- support for you as the carer (for example, counseling)
- anything that might support your child to be included in a mainstream setting. For example, I would apply for funding for my private shadow, an ABA therapist that ‘shadows’ my son around preschool and makes sure he can be involved in normal activities. The emphasis is generally on inclusion, not on special education, so on my application I am more likely to mention the need for special support in a mainstream school rather than funding for a special school.
- training for you as a parent (for example, if I were getting trained in ABA therapy and has access to NDIS, it might fund this training)
- NDIS can also pay for other less obvious things. For example, I know a family that is getting help paying for a cleaner, because the mum spends her time on therapy with her toddler.
The best approach is to make up a folder with any items that you especially have to pay for specifically because of your child’s special needs, and apply for it. Your funding will depend on what you ask for – if you do not ask for something, you won’t get it. And if it is reasonable and necessary, then you very well might.
Remember if you don’t agree with the funding package you get from the NDIS, you can appeal it but it takes much longer to review an existing package than to just apply for a better one to begin with.
My Choice Matters is a great website run by the NSW Consumer Development Fund that has personal stories and more information about the NDIS.
There are also many workshops run throughout the state where you can get information about the scheme, as well as Facebook groups where you can connect with other participants.
The Early Childhood Early Intervention (ECEI) Approach
If your child is six years old or less, the NDIS has a special approach for funding early intervention – the ECEI Approach. The aim is to make sure that parents or carers can fund early intervention for all children with developmental delay or disability. The NDIS uses a family-centered, evidence-based approach (no, you cannot use NDIS funds to purchase camel’s milk, I’m sorry).
Key Concepts of ECEI:
- This is a family-centered approach. It is based on helping the child be included in every day activities in their normal environment. It will include a partnership between professionals and families.
- It is a functional approach. There is no need for a diagnosis – it is all about finding what skills/supports the child needs to function in their normal setting, and helping them get there.
- It is based in the child’s every day environment. This may include supports at preschool, at home, wherever they spend a lot of time. Families and carers are also supported. The emphasis here is on inclusion – if applying for funding remember, it is about helping a child be included in a normal school/preschool/playgroup/everyday setting.
- Early Childhood Partners exist to help families access the NDIS and plan. They may refer you on to a mainstream service like special playgroups or community centers, provide some initial speech therapy or other short-term support, and help identify if the child requires some more long-term support. They will also help with planning your application.
Accessing the ECEI
If you are already with the NDIS, this arrangement will continue and they will contact you if any changes need to be made. Meanwhile your previous arrangements will continue.
f you are not with NDIS but are receiving other forms of funding – for example the HCWA package (see below) – then again you do not need to do anything, as the NDIS will contact you once funding is available in your area. This may not happen immediately as they go systematically across different groups. Meanwhile your previous funding arrangements will continue.
If you have not yet received any kind of funding then usually the first port of call is your GP or paediatrician, who can refer you to an early childhood partner if it has been rolled out in your area, or can at least help with the HCWA package.
You can read more about the ECEI Approach here:
This is an ECEI case study video in which Michelle, a mother of four, talks about accessing early childhood early intervention support and services through the NDIS. An open caption version of the video is also available.
Helping Children with Autism (HCWA) Funding Package
If the NDIS has not yet arrived in your area, you will be using HCWA funding. For this, as the name suggests, you will need a diagnosis. Your child will also need to be six years old or younger. If you qualify, you get $6,000 a year for two years – so $12,000 in total.
To apply for this you need to go through the Autism Advisor in your state. I had to fill out an application with Aspect, and attach a diagnosis. I also had to get a customer reference number for Michael from Centrelink, as he had not been attending preschool and didn’t have one by then.
You can only use the funding with speech pathologists, speech therapists and psychologists that have been approved in your area. Your autism advisor is your point of contact (for us, being in NSW, we go through Aspect). This is a list of approved service providers.
We use our funding for ABA therapy and our provider – the Lizard Centre – arranges most of it themselves.
For more information you can call the Autism Advisor Hotline in your state
NSW: 1300 978 611
VIC: 1300 424 499
WA :(08) 9489 8900
QLD: 1800 428 847
ACT: (02) 6140 1061
NT: 1300 288 476
TAS: 1300 288 476
SA: (08) 8379 6976
You are entitled to a rebate from medicare for 20 visits to a professional such as an occupational therapist, speech therapist or psychologist. Please note that these 20 visits are in total, not per year, and should be used only after the other funding.
Better Access to Mental Health Care Scheme
This scheme is available to all Australians, especially those experiencing strain, stress or depression. It can also help your child fund visits to the psychologist – it covers 10 individual and 10 group visits per year. This is also a rebate so it may not cover the entire cost of the visit. You do need to be referred for this treatment by either your paediatrian, or a GP managing the patient under a GP Mental Health Treatment Plan.
Your GP is the first point of contact for this scheme.
Chronic Disease Management
This is available to all Australians with a chronic disease – examples that are common among people with ASD would include anxiety, depression or PTSD. Your GP may advise the most appropriate plan for your child. GP Management Plans are commonly used for one condition, but if your needs are more complex and you need treatment from two or more providers the GP may suggest a Team Care Arrangement as well.
Under a Chronic Disease Management Plan you can access rebates for five visits per calendar year to allied health professionals under the Medicare Benefits Schedule items 10950-10970.
There are several different payments, depending on your family circumstances, that you may be eligible for as a carer.
is paid to someone that cares, in their own home, for someone with a severe disability or medical condition. To meet the eligibility conditions for this payment, the carer must constantly provide the care themselves. They must meet the income and asset tests. If you are single and caring for a child under 16, your carer payment will reduce to zero once your fortnightly income is $1918, or $2936 for a couple. There is also an asset limit of approximately $250,000 for a single carer or $375,000 for a couple (not counting your family home or superannuation). The rate is approximately $660 a fortnight for a couple each, or $877 for a single carer.
Read here for more information about the carer payment
The Carer Allowance is paid to someone that provides additional care to a child under 16 with a disability who lives with them. Unlike the carer payment it is not income or asset tested but the child must have a diagnosis or some sort of recognized disability. The rate is $123 a fortnight.
Read here for more information about the carer allowance
Carer Adjustment Payment
The Carer Adjustment Payment is a one-off payment of $10,000 for those not eligible for the carer payment but eligible for the carer allowance. To qualify you must provide full-time care for a child under 7 who has been diagnosed with a major disability following a catastrophic event. This catastrophic event can be something like a flood or fire, but can also be the diagnosis itself. You do need to demonstrate strong need for financial assistance and you must submit the claim within two years of the diagnosis.
Read here for more information about the carer adjustment payment.