Welcome to the first ever post in the new ‘5 Things Special Needs Parents Should Know‘ blog series. I’m planning on sharing these posts every Friday, so please get in touch if you want to be a part of the series or if you have an idea for a ‘5 Things’ post.
This week I’m welcoming an NDIS planner to Positive Special Needs Parenting, who prefers to remain anonymous. The information the contributor has provided has definitely improved my understanding of how the NDIS operates. In fact, there was so much information provided that there are 5 more posts scheduled to further investigate the ‘5 Things’ listed here!
I hope the information provided gives you insight into the NDIS. More importantly, I hope this information gives you ideas for how to better advocate for your child and provide the information the NDIS needs to make an accurate assessment, from the outset.
5 Things Special Needs Parents Should Know About the NDIS
The National Disability Insurance Scheme (NDIS) is a relatively new way of supporting people with disabilities across Australia. Previously funded supports for individuals with disabilities were the responsibility of state Governments, meaning that the way people with disabilities were supported varied from state to state.
In 2016 the Federal Government began the roll-out of a nation-wide consistent scheme to ensure all people with disabilities would be supported under the same set of legislation. The NDIS is still rolling-out in many parts of Australia. This has meant that all Australian’s with disabilities receiving Government support have experienced change in the supports available to them, the systems for requesting and accessing supports and the rules around how those supports are to be used.
For most individuals, these changes have been for the better as supports have been more individualised, there is more choice and control over how, when and with whom the supports are to be used and for many they have gained access to supports that were previously not available to them.
That is not to say that every person has had a positive experience of the NDIS. Many people who have relied on the knowledge and support of their service providers to assist them in decision making are now having to take the lead and are feeling lost in the Government jargon and requirements. Individuals may miss out on supports they are eligible to receive because they are unsure of what is available to them, how to ask for it, or what evidence is required to back up their requests.
In this article I will provide some tips for families of children with disabilities on the kind of supports available to young people under the NDIS, and the kind of information needed to support your case that your child requires this support. I’ll also go over some of the more common questions about the scheme.
I would like to reiterate that every child has individual circumstances and that there are very few “hard and fast” rules when it comes to the NDIS, so this information is meant merely as guidelines to help you better understand the scheme.
Under 7 vs. Over 7
It’s important to understand that NDIS plans are developed very differently for children under seven than they are for all other participants in the scheme.
Children under seven are supported using the Early Childhood Early Intervention (ECEI) approach, utilising a multidisciplinary provider to ensure a coordinated approach to care. ECEI packages are more standardised as they concentrate on providing intensive, regular therapy while the child is in their core development stage, to reduce the need for further support down the line.
Once a child turns seven they are no longer in the core developmental stage. Many families may see a reduction in supports at this time as, due to the success of the ECEI approach, therapists indicate that the child no longer requires intensive supports.
Parents can find this confronting as they have seen such significant gains in their children’s capacity with the use of intensive intervention. However, with the beginning of school and other supports coming into play, there is now much greater opportunity for the child to practice these skills across a range of settings, rather than purely in a therapist’s office (see point 4).
After seven, and for the rest of the child’s time in the scheme, funded supports will be based on yearly interview with the family by a Local Area Coordinator or Planner as well as the reports submitted by individual therapists (which we will talk about in point 5).
Do they fund that?
There are several reasons why a support that your child needs may not be funded under the NDIS, based on your child’s situation and what you are asking for. Three reasons that a support may be declined include:
The support is considered a “day-to-day living cost”. When a support is considered something that every Australian household or every Australian child requires it is unlikely that the NDIS will provide funding to cover this expense for your child. This is why, claims for swimming lessons, an iPad, trampolines or feeding formula, may be declined.
The support is better/already funded through the “mainstream”. “Mainstream” supports refer to supports provided by other existing government agencies. Sometimes the existing structures in other mainstream agencies may not work to your child’s advantage. However, under the Reasonable and Necessary legalisation of the NDIS, they are not able to provide funding to bridge the gaps where other systems are not working as they should be.
It is considered a duplication of supports. Sometimes a child or family may benefit from having a couple of supports of a similar nature. For example, a power wheelchair for long distances and a manual one for popping in the back of the car. For the NDIS to be sustainable, supports are funded at the most basic level possible to ensure that the participant’s needs are being met. Strong evidence must be provided to indicate that the NDIS is not funding a different version of the exact same support.
What is meant by parental responsibility?
Caring for a child with a disability is challenging. The obstacles they face require extra patience, compassion, and energy than caring for a child without a disability. The NDIS exists to provide support for the extra care and support required because of a person’s disability.
The concept of parental responsibility refers to the tasks required of you as a parent regardless of whether a child has a disability or not. When considering applications for funding under the scheme, it must be clear funding is needed to support the disability, not to support activity normally required of parents.
For instance, if a parent is seeking assistance to help with meal preparation so they can take their kids to therapy, this would be considered a parental responsibility and would likely not be funded through the NDIS. Every family needs to eat, and most families have out of home commitments they need to balance. This is not a disability specific need.
However, assisting a 15-year-old girl to get ready for school in the morning is something most parents would not have to do as most teenagers of this age would do most tasks themselves. This would be considered a disability specific support and assistance for this task would likely be funded.
The myth of weekly therapy
Paediatricians and therapists are likely to state that specialist therapy is required at least one hour per week (and sometimes up to 70 hours per week depending on the doctor or therapist) for your child to meet their goals and gain the best benefit.
For any person, in any situation the more we practice a skill the better we get. Similarly, the better the homework strategies we use the quicker we will pick it up. This forms the basis of NDIS funding decisions when it comes to therapy, to ensure it remains effective and sustainable.
This is why, therapy assistants are often factored in NDIS plans. A therapy assistant is generally a support person who is not fully qualified as a therapist (they may be a general care worker or a therapy student) who can be hired for the purposes of implementing the strategies developed by the allied health therapist. These assistants can come to your home, or even in some instances the child’s school, to practice the exercises set out by the therapist.
In terms of the old “scheme sustainability” argument, a therapy assistant charges around $42 per hour, as opposed to the therapists $175, that’s about four hours of therapy practice for the price of one!
Utilising therapists to develop strategies and using a therapy assistant to implement them, is a more efficient way to make your NDIS capacity building funding last. You may also find it’s more likely your child’s skills and capabilities will be transferrable across contexts, utilising a more flexible approach.
The all-important therapy report
I’ve saved the best for last. The biggest pitfall that the unsuspecting parent trying to get supports for their child under NDIS can fall for is assuming that the report provided by the allied health therapist will contain all the information required to get the funding your child needs.
Depending on the therapist, reports can range from a line of tick boxes to a 20-page essay on the benefits of their particular method of therapy. Countless times I personally have seen therapy reports which do not provide anywhere near sufficient evidence to continue funding a therapeutic support for a child (I could do another 5 points just on reports for assistive technology!). I have seen three-line reports with a quote attached for therapy twice a week that are impossible to approve.
If you take nothing else from this article, take this. Print it, give it to your therapists, and read your report before submitting it to the NDIS. If you are spending your child’s funding on receiving these reports than this is the bare minimum that must be included:
- How is the support related to the child’s disability?
- What exact skills has the therapist been working on?
- What has been achieved in the past year?
- What strategies has the therapist used?
- What still needs work?
- How do you intend to work on that?
- What informal supports have been utilised?
- Why is continued individual therapy required?
The NDIS is new, it’s big and it’s complicated. It can be easy to get caught up or confused by red tape, legislation and all the different information that’s flying around. This article was designed to give some insight and some tips into how decisions are made and how you can support your child to get the right supports the first time around. I wish you all the best in navigating this system and hope the NDIS can support your child and your family to be happy, independent and have all your needs met.
You can find further information about the NDIS at www.ndis.gov.au.
If you have questions about your child or their plan you can email firstname.lastname@example.org.
If you have feedback regarding your or your child’s experience of the NDIS you can email email@example.com.
This post is part of our new series “5 Things Special Needs Parents Should Know”. If you’d like to submit a guest post, or if you have a topic you’d like covered as part of this weekly series, send your idea to firstname.lastname@example.org
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I have a special needs child and have just been informed that ASD level 1 will no longer be funded through NDIS despite it being a disability that requires ongoing support. Could you please provide some information or insights that you may have as to how and why the NDIS have decided to do this? Kindest,
Ashley, children (and adults) with ASD lvl 1 MAY be eligible for NDIS support … they are not however, guaranteed a plan (they never were)… in terms of whether you can get a plan for your ASD lvl 1 child you would need to show SIGNIFICANT ‘functional impact’ in your child’s life – which I believe is probably best indicated through the administration of an ABAS or similar ‘functional behaviour’ assessment – which one of your therapists (Psychologist, Social worker … not sure who else) should be able to complete with you… The NDIS system is at least PARTLY based on the ‘insurance’ model – and the reason they will WANT to cover therapy etc for ASD lvl 1 children especially – is in the HOPE that with sufficient timely ‘early intervention’ the kids will eventually catch up to their peers – progress sufficiently that that can ‘graduate’ from therapy (so won’t have the requirement for therapy / support for their entire lives IF they’re given enough help in the early part)
Such a detailed post which really explains about how the system works. I’m sure this will help many families. #StarlightandStories
In some ways it’s difficult that the NDIS is NOT means tested at all … because families with one of more family members with disabilities tend to have overall lower incomes than those without – expecially those with multiple members of the household with a disability – who often live in relative poverty … so the idea of an iPad OR a Trampoline being an ‘ordinary parenting expense’ is laughable … I did end up saving up / paying for my daughter’s iPad ‘out of pocket’ BUT we had our trampoline paid for by a grant from a charitable organisation (which I guess is what the NDIS means by ‘mainstream supports’ (asking for charity). (my daughter is 11 and she uses the trampoline MULTIPLE times a day – like often 4, 5 or 6 times … she uses it to self-regulate her energy and emotions … it’s the SAME trampoline that any other parent would by for their ‘regular’ kids … BUT the amount it gets used is surely a LOT more than the average … and the consequences of NOT having an operational trampoline are NOT good are far reaching in our house