Watch episode 9 on YouTube
In this episode, we chat with Kate Cole, who tells her NDIS funding story. Kate tells us why she applied and how she navigated multiple rejections to ultimately have her funding approved.
It’s a story we hope you will find encouraging, useful and enlightening, as we did. So, if you live in Australia and know or support somebody living with a specific learning difficulty, this episode may be a game changer.
What is the NDIS?
The National Disability Insurance Scheme (NDIS) is for people in Australia under 65, living with permanent and significant disability.
- Permanent means the disability will not go away.
- Significant means the disability affects how you live every day.
Both of these criteria can apply to people living with specific learning difficulties.
NDIS and Dyslexia – Kate's story in her own words
Our daughter is a bright, happy, funny girl who is just a joy to be around. We began to have concerns about her literacy skills when was quite young. While her peers were able to recognise letters of the alphabet, she struggled to recall common letters, including those in her name from a young age. This was in contrast to the skills she displayed when performing other tasks as part of daily life – which she really excelled at!
Our daughter settled well into school but struggled with basic literacy tasks from the beginning. By the end of Year 1 we requested her school to allow her to repeat Year 1 again. We were told that repeating her would only be allowed upon completion of a psychometric assessment, an assessment by an independent speech pathologist, an assessment by an occupational therapist. We arranged the necessary tests.
Through Year 1 and 2, her school provided some support – Reading Recovery and MiniLit. In addition, we organised speech pathology & tutoring to help her. But by the end of Term 3, Year 2 it was evident that the support available within her school was insufficient to enable her to continue learning in that environment. We had had our daughter “tested” for countless things based on recommendations from the school – ADHD, eyesight problems, intellectual delays etc. None were really helpful. Our daughter is very well behaved, is a gun at ball sports and excels at mathematics. It was as though her school really did not understand her strengths at all.
We made the decision to enrol our daughter in a different school commencing in Year 3. From the start, her new teacher contacted us to discuss concerns with her literacy. She was great. A further assessment by a speech pathologist was recommended, as was a referral to a Neuropsychologist. We were blown away with his findings. Essentially it showed she had a Specific Learning Disorder that impacted reading and writing only (dyslexia). It was also very clear that this was not related to an intellectual disability and that there were certain interventions were never going to work given her condition. The Neuropsychologist also provided very specific and clear recommendations for both school and for at home which were very useful.
From that point onwards, her new school helped by providing in-class support, free access to evidence-based literacy interventions, MaqLit, assistive technology (e.g. “C-pen”), and access to learning support and a scribe. We supplemented this with regular speech pathology every week. This is all amazing while our daughter is at school. But what I think some fail to realise is that children also need to access texts and write things down when they are not at school – supports are still needed outside of an educational setting. This is why we applied to the NDIS.
Here is our Timeline:
We applied for access to the NDIS for our daughter’s primary impairment of a Severe Specific Learning Disorder with impairment with reading and written expression. We explained that our daughter had received evidence-based treatment from speech pathologist(s) since the age of 4 targeting literacy development, all with minimal improvement. She had also participated in multiple literacy interventions at school. I sought access to the NDIS for continued targeted evidence based literacy programs to lift basic literacy proficiency as much as is possible within the context of her SLD. In the context of functional impairments, I sought access to the use of assistive technology for her learning.
We were informed that our NDIS Access Request was not successful. Specifically, the requirements that were stated not to be met were:
- Section 24(1)(c) relating to an impairment” that results in substantially reduced functional capacity; and
- Section 25 relating to whether the early intervention supports are most appropriately funded by the NDIS.
Those familiar with NDIS may know that in order to meet the Access Criteria, you have to satisfy the NDIS on many criteria.
- Our application was targeted at Section 21(1) which includes:
- 21(1)(a) age requirements (Section 22); and
- 21(1)(b) residence requirements (Section 23); and
- 21(1)(c)(i) disability requirements (Section 24); OR
- 21(1)(c)(ii) early intervention requirements (Section 25).
The first 2 items above (Section 22 & 23) were easy for us. It’s Section 24 or 25 that presented the challenge.
I applied to the NDIS for a review of the outcome of our Access Request. In response to the items noted above, I wrote the following:
“In contrast to what has been stated, (Name’s) SLD significantly impedes her functional capacity to both learn and communicate in society. This is a lifelong disorder which negatively affects her ability to read and write. The ability to do so is a skill that we need to function in life and society. Her disorder has demonstrated impacts on educational and occupational attainment, as well as limiting participation and productivity. (Name) needs ongoing help and assistance, and we want to be able to help her to function in society. (Name) requires assistive technology aids to allow her to access written texts and express herself in written format. In addition, she requires speech pathology intervention to limit the detrimental impacts of her Specific Learning Disorder. Without such, (Name’s) ability to communicate is severely compromised, and she will be unable to fully participate in society. As such, I request a review of the access decision for (Name) “
I received a phone call from the NDIS seeking more information. Nothing specific was requested, just an overview of her daily life which I provided. The NDIS also contacted my daughter’s Neuropsychologist. A few weeks later, I received a letter informing me that the earlier decision to reject our request was upheld and that we were not successful. What was great about this rejection letter was that the NDIS went into much more detail on each of the Access sub-criteria on what had not been met. For example, we were informed that she did not meet the following criteria:
- 21(1)(c)(i) disability requirements (Section 24)
- Criteria (c) which means that the impairment must result in substantially reduced functional capacity in one or more areas;
- Criteria (e) which whether the condition is likely to require lifetime support of the NDIS.
- 21(1)(c)(ii) early intervention requirements (Section 25)
- Criteria 25(3) that the NDIS is the most appropriate support system.
Therefore, based on this knowledge, I applied to the Administrative Appeals Tribunal (AAT), requesting a further external review of the decision.
Our first case conference with the Administrative Appeals Tribunal (AAT) was scheduled, and in preparation, I was sent a “Respondent’s Statement of Issues” (SOI), which summarised the decision under review.
My daughter’s Neuropsychologist attended the Case Conference by phone, which was a huge help. I used the Case Conference as my first opportunity to directly ask the NDIS what it was that they wanted or expected to be provided as evidence to satisfy the 3 areas that were deemed to be unacceptable.
I explained what her daily life is like, and I was told I needed to provide a Statement of Lived Experience on what her life is like now and what it would be like if she was granted access to the NDIS.
When it came to the discussion around how significant her disability affects her life, her Neuropsychologist was amazing at articulating the research available that demonstrates the need for early intervention for this SLD and the positive impacts on day-to-day life it brings. He explained the long-term outcomes of people who have a history of reading disorders or learning disabilities and how the literature shows that children and adults with reading difficulties have established poorer functional outcomes across a range of domains, and as such, need support to be able to participate in society. He was asked to provide a summary of that research. He also provided context to the need for supports around the use of assistive technology and the use of evidence-based literacy support.
I went through what the education system provides and asked specifically what the NDIS expected “mainstream services” to provide to support her. I explained that I had already consulted with our GP on this and had access to all mainstream services available, including through a GP management plan and such were insufficient. I was asked to provide written evidence of this.
The grounds on which I argued included that her SLD does have functional impacts and such is beyond mere educational needs in the classroom. While it is true that it is the role of education to support for her in the classroom, education is not responsible for providing her assistance when she is not in class. For example, her school is not responsible to provide a C-Pen for her when she is reading at home, to assist with reading a bus or train timetable, or provide talk-to-text at home. She requires tools to navigate the written world long term.
I was specifically asked what support she needed for her daily life outside of school. Here is an extract of what I provided:
“Every-day activities that rely on reading or writing restrict her ability to participate, unless she is provided with someone to read or scribe for her or if she has access to the use of assistive technology. As parents, we have tried to support her independence by providing a C-Pen Reader for use outside of school. The C-Pen Reader enables her to scan a line of words so that they can be read back to her. While the C-Pen Reader enables her to understand some written texts, it is limited in its support when the words she needs to read are on a noticeboard (behind glass), if they are on signage (such as for pedestrian access), if they are on the TV (such as words to a song, or a warning sign etc.), or on packaging where the colours behind the words change. The latter is a good example of the challenges presented if she tries to “shop” for something, as labels on products are typically written over multi-coloured backgrounds.
Some examples of day-to-day things that she requires support for that she is unable to perform independently include:
- Unable to read the ingredients and the methods to follow in a cookbook;
- Unable to read cereal boxes, so if the packaging changes to unfamiliar colours, she cannot ascertain what is inside;
- Unable to decipher from shampoo, conditioner, or any other product such as body wash (or other products in the bathroom) unless she has become familiar with the coloured branding on the packaging over time;
- Unable to read packaged items from grocery shopping that she is not familiar with;
- If we go out for dinner, she is unable to read from the menu;
- Unable to participate in after-school extra-curricular activities such as drama or speech, as participating relies on creating texts and reading lines;
- Unable to decipher or create text messages or emails;
- Unable to read the bus or train timetable;
- Unable to read Christmas cards, birthday cards, or letters from family members;
- Unable to read notes that she brings home from school or permission slips;
- Unable to read sign-ups for community days at the local shopping centre;
- Unable to read road/pedestrian signs.”
I was also asked to approximate the level of support (in dollars) that we were after. I sought support for participation in evidence-based literacy interventions to build her literacy skills; and provision of assistive technology for reading and writing. Such should include technology that enables her to read from text, but also read words encountered in everyday life. Examples include a C-Pen Reader and technology that enables words to be read in any format, such as the OrCam MyReader. Based on these items, I estimated then to amount to approximately $10,000, consisting of ongoing weekly speech pathology ($3,500) and assistive technologies such as the Orcam MyReader ($5,695).
We were given until February to compile all requested information. The respondent (NDIS) was given around 2 weeks to respond afterwards, and another case conference was scheduled for March 2020.
I sent the following info to the ATT:
- Statement of Lived Experience
- Medical report from our GP (who was fabulous). Her letter explained the support available through mainstream services for children with dyslexia through Medicare consisted of 5 x subsidised Speech Therapy or Occupational Therapy sessions per year – and that such was totally inadequate to deal with the complex issues involved.
- Summary report from our Neuropsychologist
- Progress reports from my daughter’s school.
We were contacted in late Feb from the lawyers representing the NDIS to ask us if they could have more time to review our documentation.
I figured I have 3 kids and work full time – why am I giving lawyers who are paid to do this more time?
Soon after, we received an email stating that the NDIS agreed that our daughter now met the access criteria under Section 21(1)(a); 21(1)(b) and 21(1)(c)(i) disability requirements (Section 24).
The key things that helped me throughout this process that I think made the most difference:
1. An amazing Neuropsychologist who specialises in this area and could be called upon to provide independent information to the NDIS at any time.
2. Keeping very detailed records of every phone call with the NDIS, taking the time to read the Operational Guideline behind the NDIS (Becoming a Participant) Rules…and not giving up.
I had countless conversations where I was told that it’s a good idea to “get a lawyer” to help me because Disability law can be complicated. The idea of paying for legal advice on top of everything else was a really big deterrent. But I did all of this without any of it. Yes, it took time, but I actually think it probably took less time (definitely less money) than if I had to explain it to someone else all the time and review everything they wanted to send out. This way I felt (marginally) in control.
3. Knowing that if the situation was different, and it was actually me that was dyslexic, that it would have been very unlikely that my parents could have afforded the sheer amount of therapy, assessments, intervention, and private school fees that we have spent to help our daughter with her condition…and that my adult life would be very different. I feel very lucky that I was able to go to University. It infuriates me that help for dyslexia mainly relies on parents that can afford it. Every child deserves support for dyslexia – and such should be supported through the NDIS.
I really hope this post helps someone else access the NDIS for their child, or for themselves.
This is just a follow-up to my post on April 16, where I went through the process we took to get our daughter on the NDIS (which was recently accepted). I had lots of questions on what was included in her plan, and I couldn’t answer them because it hadn’t been approved yet.
I’m very happy to say that her plan has now been approved and is made up of the following:
- CORE/Consumables budget= $200 – For the purchase of low-cost Assistive technology to assist with her communication support needs
- Capacity Building- Improved Daily Living – $8,373.36 – Access to Speech therapy support + parent training.
I can’t tell you how much of a difference this makes to us – the ability to have funded speech pathology is absolutely amazing. I hope this post further inspires others to seek funding through the NDIS for themselves or their children, and please don’t give up.
I’m happy to help anyone on their journey.