The NDIS is meant to be easy to understand. In practice, many families find it confusing.
Most – but not all – families know that the NDIS provides help to some young children with developmental delays and disabilities. But many families don’t know:
Most – but not all – families know that the NDIS provides help to some young children with developmental delays and disabilities. But many families don’t know:
- whether their child might qualify for help;
- what kinds of help are available; or
- where to start the process.
From the front lines, the system doesn’t always seem to provide children with fair access to help
We’ve worked with many young children with developmental delays and disabilities over the years. Families who understand the NDIS rules seem to have a marked advantage over families who don’t. Some parents seem to get help for their children much more easily than others.
For a long time, the system has appeared to advantage:
- highly-educated parents;
- parents with good communication skills – especially parents with good advocacy skills;
- parents who can afford to pay private health professionals to write reports with formal diagnoses;
- parents who speak English as their first language; and
- parents in big cities with lots of options.
On the flip side, the system has at times seemed to disadvantage:
- parents with limited formal education;
- parents with communication disabilities and other challenges that make it hard for them to advocate for their children’s needs;
- parents who cannot afford to pay for private health providers’ reports;
- parents who do not speak English as a first language; and
- parents in rural and remote locations.
This isn’t fair.
The National Disability Insurance Agency (NDIA) knows about the problem: it has been working for a long time to make things fairer and more consistent. But providers can also play a part in helping to make things fairer and easier for families who would otherwise have difficulties accessing help.
What can providers do to help parents?
We can:
- listen to parents’ concerns about their child’s development and take them seriously;
- summarise access rules for early intervention and tell parents whether support might be available;
- outline the kinds of help that the NDIS funds for young children; and
- give practical advice to parents about how and when to get started in their efforts to get help.
What, exactly, can providers say to parents?
This is what we tell families who are concerned about their young children’s development and may benefit from NDIS-funded help:
(A) You are the expert on your child
If you are worried about your child’s development, trust your instincts. Don’t ‘wait and see’ what happens. Often the best help for a young child with developmental issues is early help from a team. Seek help early – even if you are not yet sure whether your child ‘will grow out of it’.
(B) Speak first with your health and early education professionals
- Often, the best place to start is speak with your child’s general practitioner about your concerns.
- If you are already seeing another health professional, like a paediatrician, community nurse, speech pathologist, audiologist, occupational therapist, or psychologist, speak to them, too.
- If your child is in childcare or preschool, speak with your child’s early educators, too.
(C) Don’t wait for an appointment, diagnosis, label, or report
- You don’t need a diagnosis to get help from the NDIS.
- Waiting lists to see some health professionals are very long – even in the private sector.
- Waiting lists for experienced health professionals have always been a problem. But COVID-19 lockdowns and their effects, as well as sector-wide talent shortages, have made the problem worse.
- If you are in the process of waiting to see a health professional to obtain a diagnosis and/or recommendations to support your child, go through with the process at the same time as seeking help from the NDIS. Reports from health and other professionals can be very helpful later in the process, e.g. when considering whether a child is eligible for an NDIS Plan with funding.
- Keep any health and education observations, reports and recommendations about your child in a consolidated file so you can find all the information you might need when you need it.
(D) To get informed, learn the basics about the NDIS approach to early intervention
The NDIA is working hard to improve early intervention. It now follows a national “early childhood approach”. Some of the terms used to describe the approach are a bit confusing – in part because of how the current laws are written. But the NDIS has made some helpful guidelines that try to explain their approach in plain English (see additional resources below).
(E) Get in touch with one or more local “early childhood partners”
- The NDIA doesn’t deliver the early childhood approach itself.
- Instead, the NDIA signs contracts with companies called “early childhood partners”.
- Early childhood partners are funded by the NDIS.
- According to the NDIS, early childhood partners offer “teams of professionals with experience and clinical expertise in working with young children with developmental delay or disability and their families”.
- You can find your local early childhood partners here. You should see a search box that looks like this:
- Put your postcode or suburb name into this search box. For example, here are the first page of results we received when we searched for “North Strathfield” (where we are based):
- Look for search results that are marked “early childhood partner”. For example, on the first page of results above, Lifestart and the Cerebral Palsy Alliance are both identified as early childhood partners within 50kms of North Strathfield. We’re lucky: there are other options near us, too.
- The search results list contact details for each early childhood partner. You can call or email them for an appointment to talk about your concerns and your child’s needs.
If you are lucky enough to live in an area with multiple early childhood partners, you may decide to talk to staff at a few before deciding which one to go with. Your healthcare providers may be able to assist you to find a partner that suits your needs.
In some places, your choice will be more limited. You may only have one option. In some rural and remote areas, you may have no early childhood partners at all. In this situation, you need to contact the NDIA directly to connect you with an ‘alternative option’.
(F) Talk to the early childhood partner about your concerns and NDIS-funded support options that may be available for your child.
- Broadly, your early childhood partner will consider three main types of support for your child as part of the NDIS early childhood approach.
- In the table below, we have made a (highly simplified) summary of the three main types of support that make up the “early childhood approach”.
- Different kinds of supports may be offered at different times during your child’s development, depending on your child’s needs at the time and the rules for eligibility.
(G) Don’t give up. If you need additional help to advocate for your child, ask for it.
Early childhood partners are funded to help you. You can also ask your healthcare and education professionals and providers for support.
We can all work with families to help make the NDIS more accessible to young children who need it
For children with developmental concerns, delays, and disabilities, timely access to NDIS support can make a big difference to functional outcomes, and to the family’s quality of life. But not all families know about the NDIS and/or how to navigate the NDIS to access early intervention support.
Providers – including health and early education professionals – can help families to understand the system, and how to get started.
More resources:
- NDIS fact sheets and videos about the early childhood approach: Help for your child younger than 7
- NDIS Guidelines on the early childhood approach
- NDIS Guidelines on early connections
- NDIS Guidelines (general link for the most recent guidelines)
- Section 25 of the NDIS Act 2013 (Early intervention requirements)
- Part 6 of the NDIS (Becoming a Participant) Rules 2016 – When does a person meet the early intervention requirements?
- “What is best practice in early childhood intervention – Reimagine Australia”
- NDIS: List A: Conditions that are likely to meet the disability requirements
- NDIS: List B: Conditions that are likely to result in a permanent impairment
- NDIS: List C: What if you’re receiving disability support in Western Australia?
- NDIS: List D: Permanent impairment/Early intervention, under 7 years. No further assessment required
This article also appears in a recent issue of Banter Booster, our weekly round up of the best speech pathology ideas and practice tips for busy speech pathologists, providers, speech pathology students, teachers and other interested readers.
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Hi there, I’m David Kinnane.
Principal Speech Pathologist, Banter Speech & Language
Our talented team of certified practising speech pathologists provide unhurried, personalised and evidence-based speech pathology care to children and adults in the Inner West of Sydney and beyond, both in our clinic and via telehealth.
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