When it comes to the NDIS knowledge is power – the more you have, the better your chances of getting a plan you are happy with.
While reports and quotes are good - the amount of funding your child gets will be dependent on your planning meeting and how you describe the impact on their daily functioning & all the needs they have across all areas of their development.
Before you roll onto NDIS
Make sure you have used all your HCWA Funding – once you accept your first NDIS plan – you can kiss what’s remaining of your HCWA funding goodbye!
If you haven’t yet used your ‘Helping Children with Autism Plan*’ this must be used prior to moving onto the NDIS as this is under the HCWA Funding.
*(The Helping Children with Autism Plan is a referral written by a paediatrician or psychiatrist - often referred to as Item 135. This plan is provided for families of children under 13 years of age with a diagnosis of Pervasive Developmental Disorder (Autism, Asperger Syndrome, PDD-NOS, Rett’s Disorder, or Childhood Disintegrative Disorder). The plan enables rebates to a total of 20 sessions from Allied Health Providers (i.e. Speech Pathologist, Occupational Therapist, Psychologist). Under this plan the 20 sessions are provided as a once-off measure for each child).
Learn the language of the NDIS. Make sure you know the difference between Core, Capital, and Capacity. Know the difference between a Local Area Coordinator and a Support Coordinator. Be sure you can distinguish between an Access Request Form and a Planning Meeting.
If you are waiting for a planning meeting and NDIS has already rolled out in your area – contact your Local Area Coordinator and explain all the reasons your child needs to have a planning meeting ASAP. Then wait two weeks and repeat. And wait two weeks and repeat.
In all aspects of the NDIS: Keep track of who said what.
Names, dates and quotes from conversations can make everyone involved accountable for ‘getting it right.’ Follow up telephone conversations with an email to confirm what was discussed. If you prefer phone over email or writing, take notes – or ask someone to take notes – whenever you, your advocate, family, carer, support worker, and/or support coordinator communicate with the NDIA.
Goals, goals, goals.
It is emphasized again and again that NDIS is all about achieving goals. So, spend some time thinking about setting goals that would require the therapy that your child needs. If you know exactly what therapies you want, you can work backwards by using the therapy to dictate your goals.
For those with younger children think of the long-term broader goals not the smaller short-term goals. For example, a goal could be for your child to be able to make his own choices making him more independent and avoiding frustration. This would give them good self-esteem and to achieve this goal they would need access to speech therapy services and a 1:1 support worker to focus on these skills with them in the community, as it wasn’t possible for them to get the time in a group setting.
The challenge for those with young children is that while they are in the school system the funding will only be calculated around what they need in addition to what the education department should be providing. In some cases, schools are not very well equipped, and many children miss out on having their needs met. Unfortunately, when it comes to NDIS funding they assume the education system is providing a lot of core development needs. So focus on goals that sit outside what the school system should be providing.
Keep a diary for one week of everything additional you do due to your child’s disability. This includes everything from changing bedding due to incontinence, preparing food due to dietary requirements or sensory aversions and the time you spend feeding or dressing your child.
Funding for any type of support (including therapy) will only be approved by the NDIS if requests meet all six criteria. Supports must:
Therapy reports with clearly visible recommendations, ideally at the beginning of the document and with very clear headings, are the most helpful because they explain to the NDIS exactly what supports the participant will need included in their plan. Be specific about the recommended quantity of each type of the support or item recommended (e.g. how many hours of therapy, the specific model of wheelchair) to make it easy for the NDIS to identify and translate into line items from the NDIS Price Guide. If you don’t know what a line item is, then you need to do more research.
Reports should detail the risk of not providing the recommended supports, and if relevant, include sound rationale for how the individual’s impairments might worsen without them.
Your planning meeting
You can choose to have your planning meeting at your house, or at the Local Area Coordinators office.
You can choose to have your planning meeting over the telephone or in person.
You can choose to have your child present (it may help or hinder your case) or to leave them with someone to care for them.
You could also have your child attend the first ten minutes or so of the meeting, and then have a carer take them so that you can focus for the remainder of the meeting. This also avoids the unpleasantness of speaking in negative terms in front of your child. Which leads on to the next point… Don’t sugar coat the facts. It’s not a great feeling talking about your child in less than glowing terms, but you are working towards a better outcome for the whole family so it’s worth it
NDIS assessors are very focused on what supports people already have. For instance, if your child spends two days a week with grandma, your funding will be less as you have family support also called ‘informal supports’. People who don't have informal supports may get more funding because they need it to assist them where others cannot.
Your mum might help out one day a week looking after your child, which is a fantastic informal support. However, if your informal supports are sporadic, have ill health or may become unavailable due to any reason, you may not have funding to replace them with a paid support worker. So only include informal supports who you know will be there for you consistently for the long term.
This also plays into the mistake of asking for supports that a school system or the medical system should provide. Think about what those two systems don't and can't ever provide for your child and push for funding for that.
NDIS is designed to provide what is missing from the already existing systems so remember that and be creative about how you word your child’s needs in the plan to ensure they get decent funding.
When talking about supports, do not discuss conditions that are not related to your childs NDIS eligibility. For example: talking about your child’s ADHD will NOT help your case because ADHD is not an eligible condition for NDIS. If a challenge or support can be related back to your childs ADHD (instead of their ASD) then it is not considered within the scope of NDIS and that support may not be funded.
You can also be funded through the NDIS for parent/carer training to attend seminars, conferences etc..
Three Reasons the NDIS could decline your support request:
Ask for a draft of your plan before it is finalised. This can be much faster than getting a review if there are things that need to be changed.
Don’t accept a plan that you are not happy with. You don’t have to accept the first plan – you can ask for a review.
Managing your funding package
Sadly – I have heard stories of mothers who have given their entire years funding package to one early intervention clinic and had it pretty much ‘spent for them’ for the year. Then when they decided they wanted a therapy or support that this clinic did not offer – the funding had already been allocated. Clearly this should not be happening. There is plenty of misinformation throughout the world of the NDIS.
It is essential you know your rights and don’t be coerced into an arrangement that isn’t optimal for your child. YOU and your child decide where and how you spend this funding. Not your therapists.
If you can manage a little bit of paperwork - self managing is the way to go. The funding generally goes further, and service providers are far more accommodating with self-managers because they know you can walk away and go to another provider anytime you aren't happy.
Contradictory reports are in circulation about pricing for NDIS funded therapies and non-NDIS (private) funded therapies. I have heard accounts of NDIS patients being charged more per consult while if you are a private patient you are charged less.
Don’t be shy and don’t be afraid. Advocate strongly for what your child needs.
For free personalised and unbiased advice contact The Association for Children with a Disability: https://www.acd.org.au
Information correct at the time of printing.
The information in this resource is general in nature and does not constitute advice.
This document is not endorsed by the National Disability Insurance Agency or The Autism Collective. The Autism Collective does not guarantee outcomes or be held responsible for any planning, plan review or appeal outcomes as a result of using this information. The contents of this entire document do not constitute legal advice and should not be relied upon as such.