By Raising Children Network
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Child using ABA therapy materials (c) iStockphoto.com/Philippa Banks
 

Diagnosis and therapies for autism spectrum disorder (ASD) can cost a lot of money. You might also need to spend money on things like equipment, travel, child care, specialist sport lessons or other activities. But you can get financial support from federal, state, territory and local governments for children and teenagers with ASD.

Accessing financial support for children with ASD

Children with autism spectrum disorder (ASD) and their families have rights to different 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 access to them automatically when your child is diagnosed. It helps to 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’ll need to explain why you or your child needs extra assistance. 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’ve successfully accessed funding 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 or case manager. This might be done to fund a specific purpose, such as 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 children in your community places in their service
  • 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 made about 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.

Federal government funding entitlements: before and during diagnosis

Helping Children with Autism (HCWA) – Medicare item assessment and diagnosis
You can get up to four Medicare rebates for assessment and diagnosis for ASD. Your child’s paediatrician or psychiatrist might refer you to another professional such as a psychologist, speech pathologist or occupational therapist to help confirm the diagnosis and develop a treatment and management plan. The referral must be written before your child’s 13th birthday.

Read more about the Medicare Rebates or phone 1800 020 103.

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 allows your child to get up to 10 sessions per year with mental health professionals (psychologists, as well as some social workers and occupational therapists) using the Medicare rebate. Group sessions are also claimable, so if you’re interested in enrolling your child in a group program (such as 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, confidential information on respite and support services, including a carer counselling program, available in your local area. These services are administered by your state Commonwealth Respite Centre.

Find out more about Carelink Centres in your area or phone 1800 052 222.

State and territory government funding entitlements: before and during 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 general term for a range of government-funded early intervention services. Funding is paid to these services directly, and you’ll usually work with a case manager to get the service.

Find out more about ECIS using our Autism Services Pathfinder – before diagnosis or contact your state or territory autism association.

Federal government funding entitlements: after diagnosis

Helping Children with Autism (HCWA) – early intervention funding
This is funding of up to $12 000 paid to registered HCWA service providers. 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. Some families who are experiencing exceptional circumstances might also be able to get this payment.

Contact your local autism advisor after your child has been diagnosed to register for this funding. You can also phone the Helping Children with Autism 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 such as 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 accessing Medicare items for autism.

Chronic Disease Management Plan
Because ASD is considered to be a chronic (or life-long) condition, people with ASD can get support under the Chronic Disease Management Plan. Your GP can refer your child to an allied health professional (such as a psychologist, speech pathologist, occupational therapist, dietician or podiatrist) 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 the Chronic Disease Management Plan.

Carer Allowance
Carer Allowance (child) is a non 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.

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.

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. You can also arrange to swap to Carer Payment and/or Carer Allowance for caring for an adult with disability for yourself.

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 such as 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 special needs. Not all children with additional needs will be able to get this support. Your child care service will need to apply through their Inclusion Support Facilitator.

Read more about the Inclusion Support Subsidy.

State and territory government funding entitlements: after diagnosis

Early Childhood Intervention Services (ECIS)
ECIS is the general term for a range of government-funded early intervention services. Funding is paid to these services directly, and you’ll usually work with a case manager to use the service.

Find out more about ECIS using our Autism Services Pathfinder – after diagnosis or contact your state or territory autism association.

Program for students with disability or equivalent
Australian state education systems support students with additional needs, but what they offer and who can get it are different across states and territories. Speak to staff at your child’s school or contact the relevant department to talk about the process in your state or territory.

Not all children with a diagnosis of ASD will be entitled to funding, and different supports are available for government and non-government schools. The funding usually goes to the school to support your child’s additional learning needs.

Read more about financial support for:

Home and Community Care (HACC)
HACC funding is available through your local municipal or shire office, and helps councils provide in-home respite care and other forms of home help. Families usually have to pay a part of the cost.

Contact your local council or shire office. You can find contact details in your local phone book or through My Neighbourhood.

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

Concession schemes
The types of concessions 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 receive a free ticket for their companion to go with them to attractions that are part of this scheme. Companion Cards are available in all states and territories.

Read more about the Companion Card.

Applying for financial support: tips from other parents

Applying for funding can be a complex process, so it’s really important to get organised. Parents of children with 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 young 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, such as verbal prompts, visual cues and so on.

These records will be a big help when it’s time to do income tax returns, lodge Medicare claims and make claims to case managers and government officers. Perhaps you could use a simple budget planner or spreadsheet – there are many online that you can use for your situation.

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 start with our parents of children with ASD forum.
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.
 
 
 
  • Last updated or reviewed 21-11-2013
  • Acknowledgements Article developed in collaboration with Amanda Golding, AmaGol Services and Lia Castorina, Amaze.