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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/carers find that 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: Advocacy WA
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: Sussex Street Community Law
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: DDWA Individual Advocacy
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: AFDO Advocacy Organisations
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: Children & Young People with Disability
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: People with Disability WA
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: Advokit
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 income-tested but the cut-off rate for the combined family income is $250,000. Check the Centrelink website for current information: Services Australia Carer Allowance
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 Carer 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: WA Companion Card
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 hold 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
Tenancy 14 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. This is called pre-planning. There are some good resources to help you understand the NDIS and help you with this pre-planning. You can download the resource 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 primary school aged child?
When you are doing pre-planning for your meeting with the LAC, you need to think about some goals for your child. 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. An NDIS plan for a primary school age child who is autistic would usually include goals relating to their development, but it’s important to also think about goals related to making social connections and taking part in community activities.
Here are a few areas to think about that might help you identify goals for your primary school aged child:
- their current stage of development, including gross and fine motor skills, communication, eating, and self-help skills such as toileting;
- the kinds of skills your child needs for home, school and at play;
- whether your child needs any equipment (Assistive Technology*) related to their disability, such as for communication;
- whether your child needs help to make friends;
- what kinds of things your child is interested in, and activities they could get involved in outside school hours; and
- whether your child needs specialist support at out of school care and school holiday programs.
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 parent training to help with parenting your autistic child.
Here are some examples of goals for this age group:
- (name) to improve communication skills
- (name) to improve self-help and daily living skills, and be able to participate more in their community.
- (name) to learn to recognise and manage their emotions (emotional regulation)
- (name) to improve their executive functioning skills
- (name) to improve balance, coordination, core strength and motor skills
- (name) to be included in after school care and holiday program activities
- (name) to increase the range of foods they are able to eat
- (name) to develop water confidence and swimming skills
- (name) to learn about making and keeping friends, and developing social skills
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 child’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 to use the toilet independently or learning money skills.
The NDIS legislation states that people with disability have the right to choose their own goals for their NDIS Plans. You can choose to discuss the goals with your LAC / Planner, or you can tell them to use the goals you have prepared.
In your child’s first NDIS Plan, it is a very good idea to organise a ‘Functional Capacity Assessment’. This is useful for explaining how your child’s disability impacts their ability to function, and is evidence to support the NDIS funding being asked for in future. The Functional Capacity Assessment can also include recommendations about types of supports to meet your child’s needs, and how much of these supports are needed.
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. Supports to work towards your child’s goals might include therapy services, assistive technology or consumables. They could include support to be included in community activities or out of school and holiday programs. NDIS generally won’t fund the costs of activities that families would generally pay for their children, such as fees for tutoring, dancing classes or sports. However, NDIS may fund specialised programs or the cost difference between individual swimming lessons and group lessons required because of a person’s disability.
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 lights. 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 children sometimes 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 ‘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.