One of the most valuable sources of support when your child has a disability 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 early on 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: www.swanautism.org.au
- Email: firstname.lastname@example.org
- Phone or SMS: 0499 819 038 or 0476 315 694
As the parent of a young child, you probably don’t 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 also 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, 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. 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 incometested 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.
Carer Adjustment Payment
This is a one-off payment if your child is aged under 7 and gets a severe illness or has a major disability.
To Do Checklist
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:
Supporting your child’s development
National Disability Insurance Scheme (NDIS)
Early Childhood Early Intervention (ECEI)
The NDIS ECEI program supports children aged 0 to 6 years with developmental delays to access early intervention to help their development. The NDIS works with organisations called Partners in Community to deliver the program. In WA, the ECEI Partner in Community is Wanslea.
What is Early Intervention?
It’s an approach designed to help each child achieve their best outcome through therapy services, to help them learn and develop their skills. Early intervention also helps families learn how to support their child’s development. The NDIS worked with leading Australian early intervention practitioners and researchers to design the approach which aims to provide the best support in the early years of life to help them be included in everyday community life.
What is an Early Childhood Early Intervention (ECEI) Partner?
The role of ECEI Partners is to work with you to identify your child’s individual support needs and goals and work out what supports will be best for your child and your family. They will then draft a plan of supports to help them towards their goals, which goes to an NDIS delegate to approve. They will explain the plan, give you information about services in your local community and help you to link with the services you choose. They will also monitor and review your child’s progress towards their goals.
In Western Australia, Wanslea is the NDIS Early Childhood Early Intervention Partner. You can contact Wanslea by phoning 1300 969 645 or emailing email@example.com
The Wanslea offices in the southwest are located as follows:
Wanslea – Bunbury
Unit 1, 28 Carey Street,
Bunbury WA 6230
Wanslea – Busselton (co-located in the APM Communities office)
Shop 13, 69 Prince Street,
Busselton WA 6280
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.
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 children sometimes also experience difficulties with low muscle tone, low core strength and gross motor skills such as sitting, crawling, and walking. Physiotherapy can help to improve these early skills so that children can go on to master more complex skills such as balancing, riding a bike, skipping, and ball skills; all skills that help children to take part in activities and sport with other children.
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 ‘evidencebased’ 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.
National Guidelines for Best Practice
Early Childhood Intervention Australia have produced these guidelines that set out the requirements for high-quality early childhood intervention. This can be especially useful when you want to check if a therapy service is providing your child with a quality service.