Disclaimer: This blog has been created and provides information based on my individual and professional experiences with navigating the NDIS and childhood diagnosis. I encourage everyone to engage with professional support and complete your own research before beginning your journey.
Has your child been demonstrating challenging behaviours? Has your child’s educators or teachers flagged with you that your child requires some extra support at times? Have you googled ‘signs of Autism, ADHD, or developmental delay’ and tick some of the signs and symptoms off the list? Or, have you simply had thoughts to yourself that your child might be a bit different than other kids their age? YOU ARE NOT ALONE!
There are many many mums and caregivers out there that are having the same thoughts and feelings as you and I’m writing this blog to provide a step-by-step guide to navigate how to access support if you are wanting to explore things further for your little munchkin.
It’s no secret that the NDIS (National Disability Insurance Scheme) can feel confusing, overwhelming, and should almost be placed in the ‘too hard basket’. But! I promise you, if you follow these steps then the process will become less overwhelming and if your child ends up having a diagnosis, then going through this journey will be well worth it as you can begin accessing the support they require.
I have personally been through the assessment process with the NDIS for my son and it took over two years and a lot of persistence, but we eventually made it to the end and now he receives the support he needs from an early intervention model of care which will give him the best chance of living life to his potential….and really that’s all we could ask for when it comes to our children. My son has been diagnosed with Attention Deficit Hyperactivity Disorder- Combined (ADHD), and Autism Spectrum Disorder- level 2 (ASD-2).
1. GP
You need a supportive GP. If you don’t have a regular GP, or don’t feel as though your GP is the right fit for your child, then I would be looking for a new GP asap. Your GP is going to be a critical part of this process and you need one that is going to be on your team and someone who you feel listens to you.
I did not have a GP who I felt was listening to me when I raised concerns about my son. For over 12 months I said to her that I thought he needed to see a Paediatrician and she continued telling me that I did not have enough evidence to support a referral. My son’s childcare centre had written letters of support outlining what was happening at childcare and I was raising my own concerns for him. I finally had enough of getting nowhere and found a new GP. Our new GP listened, empathised, and validated my concerns and a referral was done immediately for him to see a Paediatrician.
2. Your Child Must Be Under 7 Years Of Age
I can’t stress enough the importance of acting quickly when it comes to this. Your child must be under the age of 7 to receive support from the NDIS without having an official diagnosis. If you leave it too late, then you will require the official diagnosis until you can receive any support from the NDIS. My suggestion is as soon as you feel your child may need further investigation into their symptoms, then do it! You will be saving yourself a lot of time and energy.
With this side of things, I was pretty onto it….however, I did come across some hurdles which I will explain a bit further down in this blog.
3. Find Out Who The National Disability Insurance Agency (NDIA) Partner Is In Your Local Area
Call them, discuss your concerns about your child, and ask them to point you in the right direction to complete a referral. You can refer your own child to the NDIA Partner, you don’t have to ask someone to refer your child for you.
In my instance, Bush Kids is my local NDIA Partner and I found their referral forms on their website, filled them out and sent it to them. They called me a few weeks later advising my son was on a waitlist to begin the assessment process. If you need support to fill the forms out then the local partner can assist you, or a friend, you GP etc.
4. Wait Lists
There is a high chance you will be on a waitlist for your child to be seen by the NDIA Partner in your area. Unfortunately, this comes with the territory and can’t be avoided, however there are things that you can do to support your child in the meantime. Some ideas include, read, read, read. Do your research on what your gut is telling you. I will include resources that I found helpful at the bottom of this blog. Chat with your children’s educators or teachers and let them know your child is on a waitlist for an assessment. If your child is attending a state school then have a chat to one of the leadership team and request some internal support for your child if it’s not already in place. All state schools in Queensland have either a professional on site or access to a student wellbeing professional your child can engage with for support and there is no cost for the service. These professionals are qualified psychologists, social workers, and wellbeing guidance officers and their focus is on the mental health and wellbeing of students.
I experienced a lengthy wait time for my little human to have his assessment done. I am not the most patient person so I found this very difficult. While waiting I had him attend appointments with a child counsellor and I also called our NDIA Provider once a month to touch base and see if we were any closer to being seen.
5. Trust Your Gut
Even though this is step number 5, I believe it to be the most important step and one to always be in the forefront of your mind. You know you child best out of any professional you come across, so if you need to change services, question a professional, or get a second opinion…..do it!
I have so many examples of times when I have (and haven’t) trusted my gut instinct since becoming a mother. One example is with the GP who wouldn’t listen. Another example is once my son’s assessment was complete with the local NDIA Partner the outcome came back as my son not meeting their criteria to receive funding through the NDIS. We were offered 6 sessions of play therapy, which I took up, however I knew there were things happening for my son that were not within the ‘normal’ developmental scope for a child of his age. Fast forward to my son beginning Prep and the poor little thing was really struggling. I again referred him to the NDIA Partner and we were again placed on the waitlist for an assessment. This time around the process was much smoother and quicker. Given my son would be turning 6 the same year the service was able to fast track the assessment process. It didn’t take long for the assessment officer (who was a different person than the previous one) to see that my child met the criteria to receive an NDIS package. Finally, we were getting somewhere!!
6. Official Diagnosis
If your little human meets the criteria for an NDIS package then once you receive the funding begin looking into organisations that can complete the assessments they require to determine if they have an official diagnosis. Once you have chosen the service then attend an appointment at your child’s GP and get a referral. This is quite an important part of the process as there more likely than not going to be a waitlist to commence the assessment process and this in itself can take a while to complete. There will be several appointments to attend and there maybe multiple clinicians to see. At the same time as making these appointments, make an appointment with the Paediatrician, so that once the assessment process is complete the Paediatrician can also run through the results. Chat to the service who is completing the assessments and ask them if any of your child’s NDIS funding can cover the appointment costs. I believe each service is different when it comes to this side of things.
I decided to get a lot of my son’s assessments completed during the school holidays as I had time off work. The service my son attended went above and beyond as we had an existing Paediatrician appointment scheduled and they were able to juggle all of our appointments with the psychologist and occupational therapist before the Paediatrician appointment, plus they got all of the very lengthy reports completed for this too. It really pays to be organised with this stuff, go onto a cancellation list with all services, and be as flexible as you can. It can pay off and get things done in a much quicker way. Once all of this was done, the Paediatrician officially diagnosed my son with ASD-2 and ADHD- combined.
7. Carer Allowance
I have found that not many people are aware of the difference between ‘Carer Allowance’ and ‘Carer Payment’. Carer’s Allowance is a supplementary payment if you care for someone who needs daily support. This fortnightly payment is for you to give support and care to someone with a disability, medical condition, or who’s frail aged. This payment is not means tested. For more information visit here.
Carer Payment is a payment if you give constant care to someone with disability or a medical condition, or an who’s frail aged. This payment is means tested. For more information visit here.
I stumbled across Carer Allowance after reading someone’s post on Facebook. I applied for it and roughly six weeks later received a phone call from Centrelink request further information. Centrelink requires a diagnosis from a Development Paediatrician, our Paediatrician is a general Paediatrician, therefore something to keep in mind when choosing a Paediatrician. It was a simple solution though. I just needed to make an appointment with my son’s GP and ask her to fill out a form called ‘Carer Payment and/or Carer Allowance Medical Report for a child under 16 years form (SA426). Once completed I sent this form back to Centrelink and the Carer Allowance was approved. It’s about $159 per fortnight and the little bit extra is a massive help and well worth the effort to get!
8. Support
Support comes in many different forms and types. Whether it be emotional, practical, financial, psychological etc. I would say to anyone, even if they don’t have a neurodiverse child/ren that one of the most important aspects of being a mum is to find your tribe and accept help when it’s there. ‘
When I think back over what help I have had over the past 6 years, I honestly don’t know if I’d be where I am today without it. I accepted my mum’s offer when I was pregnant to live in her granny flat so that she was close by to support me and so I wouldn’t struggle financially. When going through family court I sought support from a community lawyer, low-cost mediation service, and I have had a private psychologist on and off for several years. I have said yes to my sister and close friends offering to help us. I have conversations with my son’s school leadership team and Outside of School Hours Care so they can support with strategies in the educational environment. I have spoken to management where I work in putting together a flexible work arrangement so I can better support my boy. Try to work with the problem, not against it and over time, bit by bit, with the right support, things fall into place. You’ve got this Mamma!
Resources:
I have found the following websites, books, and podcasts really helpful on my journey navigating my way through the NDIS and getting my son diagnosed. I really hope these resources and the step-by-step guide is useful for you.
- NDIS website: https://www.ndis.gov.au/;
- Services Australia website (Carer Allowance and Carer Payment)
- Book or Audio Book: The Year I met My Brain by Matilda Bosely (fantastic for mum’s out there who have received an adult diagnosis of ADHD);
- Podcast: Single Mother’s Survival Guide (A Podcast for single mums, made by a single mum)
- Raising Children- The Australian Parenting Website https://raisingchildren.net.au/ (A website which provides ad-free parenting videos, articles, and apps backed by Australian experts).
Apricity Therapy and Consultancy Services acknowledges the Traditional Owners of Country throughout Australia and community on which this blog was written, Gubbi Gubbi/ Kabi Kabi and acknowledges their continuing connection to land, water, and community. We pay our respects to the people, the cultures and the Elders past and present.
