Financial support for children with autism spectrum disorder

Financial support for children with autism spectrum disorder

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Financial support for children with autism spectrum disorder (ASD)

Children with autism spectrum disorder (ASD) and their families might have access to various kinds of financial support, often called funding entitlements. There are funding entitlements for children with ASD in early childhood, older childhood and the teenage years.

You have to apply for funding entitlements - you don't get them automatically when your child is diagnosed. Be prepared to spend time talking on the phone, filling in forms and making appointments.

To get some funding entitlements, you need only to provide proof of your child's ASD diagnosis. For other entitlements, you need to explain why you or your child needs extra help. Some entitlements or services have only a limited amount of funding available, so you might be put on a waiting list. Different entitlements might have different conditions, so your child might qualify for support under one scheme, but not another.

When you get your entitlements, they might be:

  • paid directly to you, either as income support or as medical or health rebates. For example, you might qualify for special Medicare rebates
  • allocated to your child and managed by a government officer, case manager or key worker. This might be done to fund a specific purpose, like equipment, home modifications or certain therapy costs. For older children, this might be called individualised funding
  • allocated to your child and paid directly to a service provider. Examples of this include state-funded supports paid to schools to support children with disability
  • paid to a service provider without being specifically allocated to you or your child - this is sometimes called a 'direct service'. For example, an early intervention program might be given money to offer places in their service to children in your community
  • offered as concession rates on certain goods and services. For example, concessions are provided to Health Care Card holders for prescription medicines and certain utility bills.

In some cases, you might not get the funding you've applied for. If you feel the decision on your application is unfair, you have the right to ask for an explanation or review of the decision.

The process for applying for some of the entitlements listed below differs depending on which state or territory you live in. Contact your state or territory autism association for more information about the steps you can take to register for these entitlements.

Australian Government funding entitlements: before and during ASD diagnosis

Helping Children with Autism (HCWA): Medicare item assessment and diagnosis
You can get up to four Medicare rebates for assessment and diagnosis for autism spectrum disorder (ASD). Your child's paediatrician or psychiatrist might refer you to other professionals like psychologists, speech pathologists or occupational therapists to confirm the diagnosis and develop a treatment and management plan, sometimes called the 'I35'. The referral must be written before your child's 13th birthday.

Medicare Safety Net (MSN)
The MSN helps with high out-of-pocket costs for some Medicare services. Once you've spent a certain amount on approved services in a calendar year, you might be able to get extra Medicare payments for the rest of the year.

Read more about the Medicare Safety Net.

Better Access to Mental Health Plan
This gives your child up to 10 sessions per year with mental health professionals (psychologists, mental health occupational therapists and some social workers) using the Medicare rebate.

You can also claim group sessions. If you're interested in enrolling your child in a group program like a social skills group or emotion management group, check whether it's covered by Medicare. If it is, a GP can refer your child under this plan.

Read more about the Better Access to Mental Health Plan.

Commonwealth Respite and Carelink Centres
These Centres provide free and confidential information on local carer support, disability and community services. You can contact your nearest Centre by phoning 1800 052 222.

People living in National Disability Insurance Scheme roll out areas have different financial support options from people living in other areas. If you live in a roll out area, you can find out how to get NDIS support.

State and territory government funding entitlements: before and during ASD diagnosis

Publicly funded ASD assessment services
You won't have to pay for these assessment services, but you might have to wait a long time before your child is assessed.

Contact your state or territory autism association for a list of services in your area and information about the process in your state or territory.

Early childhood intervention services (ECIS)
ECIS is the term for state government-funded early intervention services for children from birth until they start school. The services get the funding, and you usually work with a key worker to get the service.

Australian Government funding entitlements: after ASD diagnosis

Helping Children with Autism (HCWA): early intervention funding
This funding is $12 000 paid to registered HCWA service providers to provide therapy or interventions for your child. You can use this funding until your child's seventh birthday, getting a maximum of $6000 each financial year. You must apply for this funding before your child's sixth birthday.

If you live in an outer regional and remote area, you can get an extra, direct payment of $2000 to help with travel and accommodation costs.

Contact your state or territory autism association after your child has been diagnosed to register for this funding. You can also phone the HCWA Helpline on 1800 778 581.

Helping Children with Autism (HCWA): Medicare item - access to treatment
After your child is diagnosed, a treatment plan will give you Medicare rebates for up to 20 sessions with therapists like psychologists, speech pathologists and occupational therapists.

To get this Medicare item, your child's treatment plan must be in place before his 13th birthday, and the sessions must be used before he turns 15.

Read more about Medicare items for autism spectrum disorder (ASD).

Chronic Disease Management
Because ASD is considered to be a chronic (or lifelong) condition, people with ASD can get support under the Chronic Disease Management Plan. Your GP can refer your child to allied health professionals - like psychologists, speech pathologists, occupational therapists, dietitians or podiatrists - for up to five sessions each year that you can claim at the Medicare rebate.

This plan used to be called the Enhanced Primary Care Plan.

You can read more about Chronic Disease Management Medicare items.

Carer Allowance
Carer Allowance (child) is a means-tested payment for people who care for children with disability at home.

You and a medical professional both have to fill out a section on the application form. The payment starts from the date you put the form in, not the date of diagnosis, so it's a good idea to apply as soon as possible. This allowance is paid as a fortnightly cash payment, and additional one-off payments are also announced from time to time.

Once your child is over 16, you can arrange to swap to Carer Allowance (adult) for people who care for an adult with disability.

Read more about the Carer Allowance.

Carer Payment
Carer Payment (child) is a means-tested payment that supports people who can't support themselves because they're caring for children with disability. This payment is paid as a fortnightly cash payment, and additional one-off payments are also announced from time to time.

Once your child is over 16, you can arrange to swap to Carer Payment (adult) for people who care for an adult with disability.

Read more about the Carer Payment.

Disability Support Pension
As your child approaches 16, it's a good idea to contact Centrelink to discuss applying for a disability support pension for your child.

Health Care Card
A Health Care Card is automatically issued for your child when you receive the Carer Allowance. It entitles your child to concession rates for prescription medicines and other concessions like discounted public transport for some cardholders, bulk billing by selected doctors and higher refunds through the Medicare Safety Net.

Inclusion Support Subsidy
This is a subsidy paid to approved child care services, including out of school hours care and holiday programs, so that they can provide extra care for children with additional needs. Not all children with additional needs will be able to get this support. Your child care service will need to apply through its Inclusion Support Facilitator.

Read more about Inclusion Support.

State and territory government funding entitlements: after ASD diagnosis

Early Childhood Intervention Services (ECIS)
ECIS is the term for state government-funded early intervention services for children from birth until they start school. The services get the funding, and you usually work with a key worker or case manager to use the service.

Preschool Inclusion Support
Your child's preschool or kindergarten can apply for Inclusion Support funding to get additional resources, usually an aide, to help your child. Ask your preschool or kindergarten director to get the forms to apply for this funding.

Support for students with disability or equivalent
Australian state education systems support students with disabilities, but different states and territories offer different support programs. Eligibility for these programs is different across states and territories too. Speak to staff at your child's school or contact the relevant state education department to talk about the process in your state or territory.

Not all children diagnosed with autism spectrum disorder (ASD) are entitled to funding. If your child is entitled, the funding usually goes to the school to support your child's additional learning needs. Government and non-government schools get different support.

Home and community services
You might be able to access local support services like respite, transport, personal care and domestic assistance. You could start by searching online for these services.

Concession schemes
Concessions types and who can get them vary greatly. Concessions might apply to utility costs, public transport and taxi fares. Most concessions will apply only to the child who is the Health Care Card holder.

Search your state or territory government websites using the keywords 'concessions' or 'subsidies'.

Companion cards
Eligible people with a lifelong disability can get a free ticket for a companion to go with them to attractions that are part of this scheme. These cards are available to people who need support to attend an event or attraction. Not all people with ASD are eligible for this card. Companion Cards are available in all states and territories.

Read more about the Companion Card.

Applying for financial support: tips

Applying for funding can be complicated, so it's important to get organised. Parents of children with autism spectrum disorder (ASD) often say the following strategies are helpful:

  • Keep all your documents - including letters, reports and copies of forms - in one folder or box.
  • Start a notebook with details from all your phone conversations - including notes on when you contacted each organisation, who you spoke to and what they told you.
  • Keep receipts and make a note of all your expenses. This includes therapy and equipment charges, special clothing, household modifications, medical costs and program fees - anything you think is on top of the usual costs of raising a child.
  • When you're asked what level of care your child needs, it can help to talk about what would happen if your child doesn't get various supports, services and aids.

These records will be a big help when it's time to do income tax returns and lodge Medicare claims. Perhaps you could use a simple budget planner or spreadsheet - there are many online options.

When it's difficult
Applying for funding and getting approval isn't always straightforward.

Sometimes you'll be faced with a delay, a waiting list or the need to go back a step before moving forward again. It can be disappointing or frustrating when this happens, especially if you need an answer about support as soon as possible.

The key is to prepare for the process as well as you can. When you come across a challenge, try to stay positive, keep asking questions and focus on what you can do next to help things along. Talking with other parents in similar situations can help too. You could try connecting with other parents in online or face-to-face support groups.

Keep at them. Ring them and send emails. I found through this process that we - the parents - have to be the proactive ones! The therapists and associations are often so overwhelmed they can get a bit behind.
- Parent of a child with ASD.