Table of Contents
One of the most valuable sources of support for parents is other parents who are going through similar experiences. Not only for emotional support but for the sharing of everyday useful information, recommendations, and ideas. Many parents find the connections they make through support groups become enduring friendships as their children grow.
As a member of SWAN, you can join our closed Facebook Peer Support Group to connect with other parents and autistic adults, as well as follow our public Facebook page for news and information. You can also contact us for information, referral, and support, including about NDIS. We have a directory of support services on our website, but you can also contact us for help to find what you need.
- Website: SWAN Autism
- Email: firstname.lastname@example.org
- Phone or SMS: 0499 819 038 or 0476 315 694
As the parent of a school age child, you may not think of yourself as a ‘carer’, but you can still tap into a range of services and opportunities offered on the Carer Gateway. These include professional counselling (online, phone or in person), online skills courses and self-guided coaching. You can find more information about the Carer Gateway here:
Carers WA is the contact and provider for the Carer Gateway in WA:
Family and friends
Some parents find their extended family and friends to be great supports. If there are people you would like to contact sometimes for practical help or emotional support, check that they are happy for you to do this. Keep their contact details handy for when you need them.
Sometimes, if you are having problems with the NDIS or with other services such as education or health, you might feel you need someone who can give you good advice and practical help. You may get some help from family, friends, and your peer support networks, but sometimes you might want more formal help from an advocacy organisation. Advocacy organisations provide free advocacy support.
What can advocacy help me with?
If you have a problem, an advocate can give you advice to help you decide what to do. They may also provide practical support such as someone to go to meetings with you to sort out problems and make sure your child’s rights are respected.
Where can I get advocacy support?
SWAN is a free service and may be able to help you in some situations. We work with people with disability and their families to improve knowledge and understanding about the NDIS, mainstream, and disability services, and can attend meetings with you as an advocate if needed. It can be helpful to speak with a peer support organisation like SWAN before important meetings, to help you prepare. If you know more, and feel prepared, you will feel more confident in meetings to advocate for your child. Here are some other organisations that offer advocacy support:
Advocacy WA is an organisation based in Bunbury, but they also have offices in other major towns and operate across the southwest of WA. It is a free service for people with disabilities, and parents can contact them on behalf of their child for advocacy support. You can find out more about Advocacy WA and how to contact them here:
Sussex Street Community Law Services
Sussex Street Community Law Services is a free legal service based in Perth for low-income and disadvantaged people in the community, including people with disabilities. The WA Disability Discrimination Unit is part of the Sussex Street Community Law Services. They provide information and advice to people living anywhere in WA (including the southwest) who feel they have been discriminated against because of their disability. You can find out more about Sussex Street Community Law Services and how to contact them here:
Developmental Disability WA (DDWA)
DDWA provide free advocacy, and have expertise in advocacy across health, education, disability services (including NDIS), justice (including guardianship), access, recreation and housing. You can find out more about DDWA, and contact them here:
As well as being able to get individual advocacy support, there are national and state advocacy organisations that advocate to the government on issues that are important to people with disabilities. Some also offer a range of information resources. There is a directory of Australian disability advocacy organisations here:
Children and Young People with Disability Australia (CYDA)
Children and Young People with Disability Australia (CYDA) is the national representative organisation for children and young people with disabilities aged 0 to 25 years. CYDA has information on NDIS, inclusive education, and much more.
People With disability WA (PWdWA)
PWdWA provides non-legal individual advocacy to help people with disabilities speak out, express their views, and uphold their rights.
Advokit is a simple, pop-up website produced by Disability Advocacy Network Australia (DANA) and Inclusion Australia during COVID 19. It is designed to help you with the advocacy resources you need during the pandemic and beyond.
Most parents of autistic children will be eligible for some financial assistance from Centrelink / Services Australia. However, you don’t get any allowances or payments automatically when your child has a diagnosis, you have to apply for them. The rules and application forms may change from time to time, so it’s important to look at the current information and use current application forms. The payment starts from the date Centrelink receives your application, not the date your child is diagnosed, so it’s a good idea to apply as soon as possible. *Please note that when your child turns 16, Centrelink considers them to be an adult. See the information below for 16 years and over for details. Here are some payments you may be entitled to:
Most parents of children diagnosed with autism will qualify for Carer Allowance from Centrelink. This is a fortnightly supplement to help with costs related to the disability. The allowance includes a Health Care Card in your child’s name, which entitles them to low-cost prescription medications. The allowance is income tested but the cut-off rate for the combined family income is $250,000. Check the Centrelink website for current information:
Carer Payment is a means-tested fortnightly payment sometimes known as the Carer Pension. This is a payment for people who can’t support themselves because they provide constant care to someone who has a disability, illness or is frail and aged.
This is a once-a-year payment automatically paid to people who receive Carer Allowance or Carer Payment.
Child Disability Assistance Payment
This a once a year payment automatically paid to people who receive Carer Allowance for a child under 16 years.
Services Australia (Centrelink)
Check eligibility for:
- Carer Allowance
- Carer Payment
- Carer Supplement
- Child Disability Assistance Payment
- Carer Adjustment Payment (CAP)
You can find more information here:
Services Australia Getting a Carer Payment
Services Australia (Centrelink 16 years and over
When your child with a disability turns 16 years of age, Centrelink treats them as an adult. Carer’s Allowance (Under 16 years) payments, and the linked Health Care Card in your son or daughter’s name stops. There are a number of Centrelink payments and other government entitlements that your child and you as a carer may be eligible for when your child turns 16. While payments won’t apply until your son or daughter’s 16th birthday, it’s a good idea to start the application process earlier as the process can take some time.
Where to start?
BEFORE your child turns 16, start by ensuring that your child has the following:
- Bank account in his or her own name (with linked debit card)
- Tax File Number
- Birth Certificate
If you obtain a bank account and TFN before your child’s 16th Birthday, you won’t need as many identifying documents. A bank debit card in your child’s name also contributes toward 100pts of ID. After their 16th Birthday, your child will need to have 100 points of ID in order to apply for a Tax File Number (TFN), bank account, AND for any eligible Centrelink payments.
You can apply for a WA Photo ID Card from the Department of Transport after their 16th Birthday. In the application for the Photo ID, it is possible to apply for two cards, one listing home address, and one without. The Photo ID Card can be used in place of a driver’s licence.
Please note that it is preferable to have a bank account in your child’s name. If needed, the bank can authorise a parent/guardian to have authority to operate the bank account. Some banks will also link children’s bank accounts to parent bank accounts for easy access through internet and phone banking. Payments into a bank account in the name of the person with disability means that they will continue to be able to access their payments if their parent / carer passes away; and may reduce the risk (or perceived risk) of financial abuse.
You can take as long as you need to complete the required Centrelink application forms. If the documents are submitted after the two weeks allocated by Centrelink, payments will be back-dated to the date you submitted the forms.
It is important to make sure that all forms are completed accurately, so take your time doing this, rather than rushing to submit all paperwork within the two weeks.
What financial assistance could my child be eligible for?
Here are some of the different kinds of financial assistance your child (and you) may be entitled to, and some tips to help you apply for them.
Disability Support Pension
The Disability Support Pension (DSP) provides financial assistance to people over the age of 16yrs who have a physical, intellectual or psycho-social disability (or are permanently blind) that prevents them from working more than 15 hours per week, or be re-trained for work. You need a medical report from your teenagers doctor to apply. The medical report form is part of the Disability Support Pension application package you will get from Centrelink. You will need to book a long appointment with your son or daughter’s GP to complete the medical report, and your son or daughter will need to attend the appointment. Your son or daughter may also need to undergo a Job Capacity Assessment with Centrelink. People who receive the DSP are automatically eligible for a Health Care Card. Their Pension card also serves as their Health Care Card. *Please note: Because autistic individuals are all different, not all individuals with an autism diagnosis are eligible for the Disability Support Pension.
Authority to enquire or act on your child’s behalf
Centrelink can be a complicated system to understand and interact with, so most parents arrange authorisation to interact with them on their teenagers behalf. You will need to complete the SS313 form: ‘Authorising a person or organisation to enquire or act on your behalf’ to give permission for one person (eg. parent, sibling, carer, advocate) to interact with Centrelink on behalf of your son or daughter. They can still interact with Centrelink themselves if they wish. You can go to a Centrelink office with your son or daughter to submit all the application forms including the SS313, and Centrelink staff will witness your son or daughter signing this form. Please explain to your son or daughter what this form is about before they sign. If your son or daughter is unable to sign this form, please advise Centrelink.
Pensioner Education Supplement
If your son or daughter is eligible for the Disability Support Pension, they may also be eligible for the Pensioner Education Supplement. To be eligible, the applicant must be:
- studying a secondary (high school) or tertiary (University, TAFE, or eligible private training organisation) course
- already receiving a pension or eligible payment
- studying full time in an approved course, undertaking approved activities or in some circumstances, part time
Carer Allowance (Over 16yrs)
If you currently receive Carer Allowance (Child Under 16yrs) or partial allowance if you provide part time care, you may be eligible to receive Carer Allowance (Over 16yrs). You will need a medical report from your child’s doctor to apply. The medical report form is part of the Carer Allowance application package available from Centrelink. You will need to book a long appointment with your son or daughter’s GP to complete the medical report, and your son or daughter will need to attend the appointment.
Carer Payment is an income support payment for people who personally provide constant care in the home of someone with a severe disability, illness, or who is frail aged. If you are deemed eligible to receive Carer Payment, you will automatically receive Carer Allowance. You use the same forms as for Carer Allowance.
Ex-Carer Allowance (Child) Health Care Card
If you are eligible for Carer Allowance (Over 16yrs), your child will not automatically be allocated a Health Care Card in their name. If you already have a Health Care Card for your entire family, or your child is eligible for the Disability Support Pension, you will not need to apply for the Ex-Carer Allowance (Child) Health Care Card. *Please note: Your child may still be eligible for this even if you have been deemed ineligible for Carer Allowance (Over 16yrs) by Centrelink.
Mobility Allowance is a Centrelink payment for people with disability, illness or injury who cannot use public transport without substantial assistance and who participate in approved activities. To qualify for Mobility Allowance, a person must be:
- aged 16 years or older, • unable to use public transport without substantial assistance because of a disability, illness, or injury,
- travelling to and from home for paid work, voluntary work, study or training, or to look for work.
If your son or daughter has an NDIS plan, they will not get Mobility Allowance as travel assistance funded is covered by NDIS.
Country Age Pension Fuel Card (Western Australian Government Scheme)
If your son or daughter is eligible for the Disability Support Pension, or you receive Carer Payment or other eligible pension and live in regional Western Australia, the person who receives the pension or payment is eligible to receive the Country Age Pension Fuel Card. You can get the application form from your local Australia Post office, and you can submit the completed form direct at your local Australia Post Office. You will need to show Australia Post staff the Pensioner Concession Card as proof of eligibility. The fuel card will automatically be reissued annually as long as the person remains eligible. The fuel card assists with transport costs, and can be used with taxis and petrol stations registered with the Country Age Pension Fuel Card Scheme.
Continence Aids Payment
This payment helps you meet some of the costs associated with continence and continence related products if you have permanent and severe incontinence and are 5 years of age or older. If you have an NDIS plan, you can get continence aids funding in your plan instead of this payment.
This is a card for people with a significant and permanent disability, who need support to participate at community venues and activities. When going to venues that accept the Companion Card, the person supporting the person with disability is able to enter for free. The cardholder (person with disability) still pays an entry fee.
You can find out about eligibility and how to apply here:
Supporting Your Child's Development - NDIS
National Disability Insurance Scheme (NDIS)
The National Disability Insurance Scheme (NDIS) is the national scheme that funds reasonable and necessary supports to help people with disabilities live the life they want. The NDIS is run by the National Disability Insurance Agency (NDIA). In regional Western Australia, NDIA offices are usually co-located at Centrelink.
Who is eligible for the NDIS?
If your child is aged 7 and over they must have a significant and permanent disability. They will need a diagnosis of autism or other eligible disability to access the NDIS. To be eligible, you also need to be an Australian citizen, be a permanent resident, or other visa holder with a Protected Special Category Visa.
How do we access the NDIS?
Download and fill out an NDIS Access Request Form (ARF). If your child is diagnosed with autism level 2 or 3, you can submit a copy of your child’s autism diagnostic reports with the ARF to NDIS instead of filling out section 2 of the form. If your child has been diagnosed with autism level 1, you will need to ask your GP, paediatrician, or allied health therapist to fill out section 2 of the form, and submit that to NDIS with the ARF and diagnostic report.
You can download the forms here: NDIS Access Request Form.
The form can be emailed to NAT@ndis.gov.au, or dropped off at your nearest NDIS office (usually co-located at Centrelink).
APM Communities is the NDIS Partners in the Community organisation in the south west of WA. They deliver NDIS Local Area Coordination (LAC) services to help people with disability, families and carers to understand the NDIS and identify and access the services and support they need. They work with NDIS participants to develop and use their NDIS plans. As well as disability services, APM can help with connection to community and mainstream services. Approximately 75% of NDIS participants aged 7yrs+ will work with an LAC to prepare and review their NDIS Plans. The other 25% will meet with NDIA Planners direct. The main role of the LAC partner is to draft your child’s NDIS Plan and send it to the NDIA for approval.
To speak to someone about LAC Services, call 1300 276 522 (APM LAC) or email email@example.com.
There are APM offices in Bunbury, Busselton and Margaret River.
Shop 1 16 Victoria Street
Bunbury WA 6230
Ph: 1300 276 522
Shop 13 69 Prince Street
Busselton WA 6280
Ph:1300 276 522
The Village at Margs
49 Town View Terrace
Margaret River WA 6285
Ph: 1300 276 522
What help can we get from NDIS?
Every person is different, so the NDIS works with each child and their family individually at a planning meeting with the APM LAC. The aim of the meeting is to identify needs and goals and work out a plan of supports. It is VERY important to prepare for this meeting, to make sure your child gets a plan and the funds to pay for support services. There are some good resources to help you understand the NDIS and help you with this pre-planning.
You can download the booklets here: NDIS Participants
You can also contact SWAN to help you with the process of working out what your child needs, and what will work best for your family. We can meet with you face to face or via Zoom video-conferencing. You can find some more pre-planning resources in the ‘For Further Information’ section of this booklet.
What is usually in an NDIS plan for a high school aged child?
When you are doing pre-planning for your meeting with the LAC, you and your teenager need to think about some goals. NDIS plans are usually for 12 months, and are then reviewed, so it’s a good idea to think about some long term goals for the year and some shorter term goals that can be achieved during the year. The teenage years generally mean less reliance on family and more connection with friends and other people in the community. The transition to adulthood during these years can be challenging for any young person, but can be harder to understand and deal with when you are autistic. An NDIS plan for an autistic child during their high school years would still usually include goals relating to their development, such as speech/ occupational therapy and psychology support. But it’s also important to think about this stage of life; the kinds of things you would expect to happen in any teenager’s life, and the supports your child might need as they move through these years.
Here are a few areas to think about that might help you identify goals for your autistic teenager:
The NDIS doesn’t cover supports, resources and equipment that are the responsibility of the school and/or education department to provide. For example, the NDIS won’t provide funds for Education Assistants, modifying curriculum or modifications to the school environment. But NDIS will fund some supports to help inclusion and participation, transition between schools and aids and equipment used both at home and at school. The NDIS may also agree to a goal to help you increase your skills and capacity as a parent to support your child’s development and inclusion, for example, learning to support their communication, or attending SWAN or other workshops to help with parenting your autistic teenager.
What goals could we include in the plan?
First of all, it’s important to include your teenager in pre-planning. The way this happens will depend on each person, their communication skills, their interest I being involved, family relationships and more. To be successful, it needs to be a plan they feel comfortable with, so they need to be involved in whatever way possible. Plan ahead so there’s no need to rush, and build the pre-planning around your child, in ways they can contribute and in ways that interest and that motivate them. A young person who enjoys drawing might like to draw pictures that relate to what they want to achieve. There are some good planning tools that are visual and that you can have conversations about to explore ideas and goals. For example, Autism Queensland have created the Adolescent/Adult Goal Setting Tool (AAGST) designed to enable autistic individuals and other neurodivergent individuals to engage in person-centred planning processes.
For More information on the AAGST, please visit: Autism QLD – Adult Goal Setting Tool
Think about the skills your teenager needs at home, in school, to make friends, to take part in community activities and sports, and when they are preparing for life after school. Think about some long term goals (keeping them fairly broad), as well as some shorter term more specific goals that might be achieved during the year Examples of some broad goals could be:
- (name) to improve his/her communication skills
- (name) to develop his/her social skills
- (name) to develop skills to support independence
- (name) to maintain his/her health and fitness
- (name) to prepare for further education/employment when they leave school
Some broad specific goals could be:
- (name) to learn to prepare a meal to share with the family
- (name) to learn how to keep his/her room tidy/wash his/her clothes
- (name) to learn how to use a phone
- (name) to learn about relationships, sexuality and staying safe
- (name) to learn to use public transport
- (name) to learn and practise money management skills
- (name) to do some work experience, do a TAFE course, learn job-ready skills, prepare a resume
- (name) to go to the SWAN Youth Engaging Successfully (YES Program) to develop social, communication, and independence skills
- (name) to go to a range of recreation, sport and community activities such as Scouts, and develop community connections and skills
- (name) to be included in after school care and holiday program activities
- Funding for Apps/Communication aids to help (name) communicate
There are usually 2 short term and 3 long term goals in an NDIS Plan (although you can have fewer or more than this if preferred). It’s often a good idea to keep your goals broad and flexible, as your teenager’s needs and goals can change during the year. For example, your broad goal may be to improve self-help and daily living skills, and the specific goals may be things like learning money skills.
When you are pre-planning, it is important to understand that the NDIS won’t cover supports, resources and equipment that are the responsibility of other government services (such as health or education) to provide. NDIS won’t fund fees for activities which all families must pay, but if your high school aged child needs, for example, specialised coaching because of their disability, the NDIS may contribute to the cost if it is more than regular classes or coaching. NDIS won’t usually cover gym fees but may, depending on how it is related to a person’s disability. NDIS may fund assessments, fitness program design and sessions with an exercise physiologist. Support workers can help with skills development, at home or in community settings, and be mentors and role models in community and social situations, as well as helping your young person get around.
For yourself, you may want to learn how to help your child meet their goals, or you may want to learn other information and skills related to caring for your child. You can include a goal in your child’s plan under ‘Training for parents’, such as attending workshops for parents.
NDIS may fund items such as continence aids (eg. nappies), waterproof sheets and wipes for children aged 5yrs and over, and clothing to maintain hygiene such as incontinence or period underwear. If your child needs these, it is recommended that you ask for consumables in their plan.
NDIS Social Media support networks
Here are some online groups you can join to share or find information with other NDIS participants and families:
- NDIS in WA Peer Support Facebook group
- NDIS Grassroots Facebook group
- NDIS Self Management Hub Facebook group
You can also find peer support on a range of things including NDIS online by joining:
- SWAN Group – South West Autism Network Facebook group
- Disability Peer Support South West WA Facebook group
Your Rights – NDIS
People who receive NDIS funding and supports have a number of fundamental rights. This includes the right to quality services to meet their needs, the right to choose and control their services, the right to be safe when using services, and the right to make complaints. The NDIS Quality and Safeguarding Commission is the organisation responsible for upholding people’s rights and taking complaints relating to the NDIS.
Supporting Your Child's Development - Therapies
What kinds of therapies might your child need?
Every child is different and needs different kinds of support. Some therapies work to help a child’s development by teaching skills, while others may focus on providing positive behaviour support. Your child’s NDIS plan will include funding for assessments, therapy, and parent training in a section of their NDIS plan called Capacity Building – Daily Living. You will be able to choose therapists to assess your child’s needs, and work with them during the year to build their skills. Here are some of the different kinds of therapy:
If your child needs help with speech, communication, and comprehension, you and your child can work with a Speech Pathologist (sometimes called a speech therapist). They can also help children who have difficulties with feeding/eating.
Psychologists help children with understanding and managing their emotions, learning social skills and interaction, staying safe, and positive behaviour support. They also help parents with understanding their child’s needs, and how to support them.
Occupational Therapists help children to develop skills for daily life such as eating, dressing and toileting so they can become more independent. This involves supporting the child with their fine and gross motor difficulties, sensory issues (e.g., over-sensitivity to noise, light, smell, and touch), organisation skills and information processing.
Autistic people sometimes experience difficulties with low muscle tone, low core strength and gross motor skills such as walking, running, cycling and climbing stairs. Physiotherapy can help to improve their skills to help them improve their fitness and take part in activities and sport.
Many autistic children toe-walk. Spending a lot of time toe-walking can cause problems with feet and ankles, such as the Achilles tendon becoming too short as they grow. Podiatrists and physiotherapists can both help with improving foot and ankle flexibility and strength.
Alternative therapies are therapies that are outside of conventional medical and allied health practice. You might see these advertised online, or well-meaning people may tell you about them. However, the benefits are generally not supported by rigorous scientific testing, and some are actually harmful.
When you’re choosing a type of therapy, it’s important to look for ‘evidence based’ approaches – that is, interventions that have scientific evidence to show they work for autistic children. Seeking advice from autistic adults who have experienced these therapies can be helpful. Be cautious and use your judgement when considering interventions that haven’t been scientifically tested. It’s also important to remember that NDIS will only fund therapies and interventions which are evidence-based.
Here are some other terms you will probably come across relating to therapy:
Child and Family-centred Approach
Therapists will work in partnership with families to better understand their unique circumstances, and to help parents decide what strategies will best suit their child and their family. You should always be involved in setting goals and talking about how you can work towards them.
Multidisciplinary Team Approach
Each type of therapy is a ‘discipline’. Multidisciplinary means that your child sees two or more different types of therapists who each work with your child as part of a team (e.g. Speech Pathologist, Psychologist, and Occupational Therapist). In multidisciplinary therapy, the therapists share what they know about your child and what therapy they are doing with each other, to make sure that your child’s needs are understood, and that therapy is holistic.