To whom it may concern,

I am writing to outline some of the difficulties I see with the NDIS implementation in the ACT. My son has an NDIS early intervention package.

1. The system is difficult to navigate and stressful for carers When caring for a child with a disability, you are already pushed to the edge of your ability to cope. Each daily task you need to accomplish is significantly more challenging than it would be for another child. To add into this burden dealing with the NDIS nearly pushed me to breaking point. While all the individual staff are helpful, the manifestly inadequate systems and resourcing for the NDIS, make navigating it a nightmare. For example, to get the form for applying for the early intervention package took 3 months, numerous phone calls with 60 minutes or longer on hold, and a formal complaint. Getting the form required talking to two people. The phone system would invariably cut out as you were transferred between them. So you would have to start the whole process again. Making the formal complaint finally got me the form, but I also wonder whether parents less familiar with government systems would think of using that route. This presents an equity issue. At meetings with the NDIS you are rarely told what criteria you will be assessed against, or what things you may be eligible for. The fact sheets on the NDIS website are basically useless for this. This makes it difficult to have the right evidence for NDIS meetings. Getting NDIS funding or not makes a huge difference to the future of a child. As a parent the stress of this high stakes assessment, without good information, creates massive anxiety and distress.

I was sent a letter telling me I had a package with no information about how to access the funding, record keeping requirements etc. If I hadn’t had friends with kids already in the NDIS I don’t know what I would have done.

2. The system relies on families being able to fund expensive private assessments so lacks equity

I was fortunate to be in the position to pay for some expensive tests and private specialist appointments required to demonstrate my child’s level of impairment. I can’t imagine how a family without a few thousand spare dollars would gather the evidence to be accepted in that key early intervention window.

3. Only the early intervention package takes a functional approach. Past age 7 there is a tick list of diagnoses. Regardless of your level of impairment, if you don’t make the tick list all support is withdrawn. The list of disabilities is very narrow, and does not properly recognise or support psycho-social disabilities.

I have a son with significant functional impairments around fine and gross motor, muscle tone, social skills, and learning. He has cognitive impairments around processing speed and working memory, ADHD, anxiety, a sleep disorder, and an incredibly rare genetic condition called Periodic Fever, Aphthous Stomatitis, Pharyngitis, Cervical Adenitis (PFAPA).

He requires weekly child psychology, fortnightly OT, speech pathology, and physiotherapy. He also has monthly paediatrician appointments and requires medication which isn’t on the PBS, so costs $135 per 28 days, in addition to a PBS medication that’s $35 every 28 days. While we are relatively well off there is no way we will be able to afford the support he needs without NDIS funding, as it is we are using our savings up. However, we have been told that none of his disabilities are considered disabilities under the adult NDIS criteria which cuts in at age 7. It seems like the NDIS simply does not understand psycho-social disabilities or provide adequate support for them. As a parent it is heartbreaking to know that your child can be helped, but you will not be able to give them what they need. I feel like I have failed my son, but am powerless to do anything differently. I know other children with a similar or lower level of impairment who can access the NDIS because they have an ASD diagnosis, which is on the list. This feels terribly unfair.

4. 7 is too early for early intervention to cut out – particularly given the difficulty accessing services I struggle to understand the rationale for withdrawing early intervention support at age 7. Many problems are not picked up until preschool. We tried to be very proactive, but with the long waiting times for specialists my son was 5.5 before we had gathered the evidence and fought our way through the NDIS system. Then we had to go back on the waiting lists for allied health providers, and try a few different ones before we found people who could help our son. He was 6-6.5 before we finally had regular appointments with most of the providers he needs. Now we face the support cutting out just as it is starting to have a positive impact. We were threatened with having our NDIS funding withdrawn because we hadn’t spent it all. I know lots of families this has happened to. This shows no appreciation of the difficulty in accessing services.

5. Flexibility that was built into the system about how to achieve good outcomes isn’t being used My understanding is the NDIS was meant to be focused on achieving good outcomes for individuals, and be flexible in how this was achieved. This has not been my experience of it. My son needed to see a physio for his gross motor, but despite being on several waiting lists we couldn’t get him in with one. His OT did some work in this area, but he didn’t like doing their exercises and was making no progress. His OT suggested gymnastics, swimming and tountain biking as good activities he would enjoy that would have the same impact as working with a physio. However, we were not able to use our NDIS funding, as it was only for allied health providers. We have paid around $2500 to allow our son to do these activities, to be equitable to his sister we enrolled her in most of them as well. They have been effective in achieving the outcomes physio was meant to, and at a much lower cost than weekly physio appointments (about $9,000 over a year). However, when our plan was reviewed and we asked for them to be included we were told that recreational activities were things all parents paid for and the NDIS wouldn’t cover them. This was incredibly frustrating. With the exception of swimming we would not have done these activities but for their therapeutic benefit. It also fails to acknowledge that families with a child with a disability spend their disposable cash on specialists, and have a very limited ability to fund additional, expensive extracurricular activities.

Costs to Families

The Support for People With Disabilities Is Funded Down Government Silos

The support for people with disabilities is funded down government silos, and doesn’t take a whole of person approach. For example, medical costs (eg assessments, paediatricians, medications) are meant to be funded by the Medicare and PBS, so are not covered under the NDIS. However, there are huge differences between what these services cost and the funding provided, which has to be borne by families. The NDIS also doesn’t recognise the reduced earning potential of carers of people with disabilities. Both my husband and I have had to reduce our working hours to four and three days a week respectively, to accommodate the constant driving to appointments and other support my son needs. A one hour appointment often takes half a work day in parental time, by the time you have driven to the school, collected a child, driven to the provider, waited, had the appointment and returned the child to school. Reduced earning potential makes it even harder to cover all the additional costs that come with a child with a disability. On top of that there is lots of extra time in making resources like tick charts to help your child, and doing extra activities and exercises to continue their therapy at home. Disabilities also often don’t just affect one family member. My four year old daughter is exhibiting similar worrying signs to my son and we are starting down the process with her. I just don’t know how we will pay for or find time for another group of appointments and specialists.