Finding support, part 1
Government sources
Neurodiversity always comes with challenges, and one of the hardest things when a person is diagnosed is to know how and where to seek help. Different families mean different circumstances however more often than not some serious support is required for everyone impacted by neurodiversity: for the parents of a neurodivergent child, the sibling, or the child in question; the adult who has been diagnosed, the spouse, or their family members. Life is not easy when a person is living in a world that does not cater for them and support is essential for all concerned. For this reason I decided that it might be helpful to give an idea of the different types of supports that can be sought by both parents and individuals. You can choose any or all of these supports, and they are divided into three supports, making three parts to this series:
1. Government sources
2. Professional source
3. Community sources
Part 1: Government sources
The following government supports are for those living in Australia. If you’re in a different country then I’m sorry but I have no idea what options you have! I’m going to give a brief outline those supports that I am aware of, to at least give you an idea of what the deal is. I do have to warn you though, I am somewhat jaded by my experiences dealing with government departments and each year feel myself worn down more and more. I will attempt to give a balanced opinion however I recognise my bias and ask your forgiveness. We are very blessed in Australia to have government assistance but it is difficult to be thankful when the system seems utterly broken. I feel that the key to accessing government supports is to fight; the more you fight/advocate, the more funding you receive. If you are solely relying on government sources then you will probably not be able to sustain this fight for any length of time; professional and community supports go a long way to keeping you energised and sane. Above all, the most important and ultimately most useful support you can lean on is God, relying on His guidance and mercy as you seek the best for you and your family.
National Disability Insurance Agency (NDIS)
This is a fairly recent creation here in Australia, having been rolled out only in 2013 to replace the existing system of disability care and support. Most people involved with NDIS have very strong opinions about it, and some would argue that it causes more stress than not being on it in the first place. Personally I’ve been playing their games for about 6 years now and though I reiterate how blessed we are in Australia, I am inclined to agree. But the cost of therapy is exorbitant without NDIS funding so I shall keep ‘keeping on’, although each year the fight is getting harder and harder as hope is continually ripped from me and thrown against the rocks of despair.
Officially the premise of NDIS is to ‘provide all people with disability with information and connections to services in their communities such as doctors, sporting clubs, support groups, libraries and schools, as well as information about what support is provided by each state and territory government’ (https://www.ndis.gov.au/understanding/what-ndis). It’s all about providing support, whether that be financial or otherwise. Most people’s experience with NDIS has shown it to be somewhat less altruistic and more business-like. Over the years it has managed to qualify its services so it’s less ambiguous, which on the one hand is good (once upon a time it depended on who you called as to what answer you got, so it was a legitimate tactic to just keep calling until you got the answer you wanted) but on the other it’s become far more stingy (‘we only fund what is reasonable and necessary … according to us’). It would appear their latest objective is to ween participants off the system whether they’re ready for it or not, or string them along on plans that are virtually worthless so that minimal progress can ever be made. Unfortunately it’s a catch-22: if you’re not with NDIS then it’s only the very rare therapist that you can afford; if you’re with NDIS then there’s a good chance that you’ll be the one needing therapy in the end.
After 7 years I’m still as lost as the day I entered into this relationship and am yet to find a person who can make the system work in their favour. However this is the current system that we are forced to work with and so even after the very disheartening description I just gave about it, I encourage you to get onto NDIS as soon as possible and I wish you well in your efforts. Unless, that is, you’re straight ADHD or have a learning challenge (including giftedness), in which case apparently (though not in South Australia) there are ‘other forms’ of support out there so don’t bother applying for NDIS. Should you be accepted you will receive a funding package for between 1 to 3 years based on what they think is reasonable, and perhaps support. Check out their website for more information about the ins and outs.
One thing in NDIS’ favour is that their website is semi-informative, making a claim is fairly simple, and they have streamlined the process of application so that it is now far, far easier and quicker than it was when NDIS was first rolled out. Unfortunately once you’re in the system everything slows down and gets more difficult, but it is nice to get that initial surge of hope at the beginning to bolster ones confidence towards this new life that you’ve suddenly obtained.
Centrelink
Centrelink is another government agency that is reputedly here to help, though to deal with NDIS and Centrelink in one lifetime can be a bit much! I should however state that my frustration is slightly tempered knowing that we are blessed in Australia to have a government that is willing to use our taxes to provide assistance. I don’t have much to say about Centrelink other than if you’re a parent then look into carers payment or carers allowance. If you’re a homeschooler then try applying for Assistance for Isolated Children. Again, their application processes are quite streamlined, though be prepared for a lot of paperwork and for your application to be rejected at least once. Oh, and if you’re applying for Disability Support Pension, it appears that the standards are so high that very few people are able to access it, even though they desperately need it (not just neurodivergents either). I have heard it said though that the more times you apply the more they do consider you as worthy, so perhaps persistence might actually get you somewhere with this one?
Department of Education and Children’s Services (DECs)
Between the hours of 9 and 3 on weekdays, NDIS (and sometimes Centrelink) hand the baton over to DECs, and by and large the two try to keep out of each others way, for fear of overlapping support and wasting their own funding. I am perpetually confused about how DECs funds disability, and since I’m outside of the school system I haven’t made it my mission to find out the ins and outs, however I shall share with you what little I know and feel free to expand on this knowledge in the comments or flick me an email. The latest I have heard is that each child is ranked (Category 1 – 8) according to some arbitrary system. The higher the category, the more funding they get. This funding is then given to the school for the child (though does not have to be used on said child but at the school’s discretion) before a particular date in the year, so if the child moves school after this date then the funding doesn’t move with them. From what I’ve heard it seems extremely difficult to move up in category and schools may apply multiple times yet still fail. Funding supports help mostly with getting on top of behaviour. In South Australia they don’t recognise learning challenges as disabilities so it’s up to the individual school and teachers to figure that one out.
A special note to homeschoolers: once you withdraw your children from the school system, expect to receive no help from that quarter. While ND kids often have it so tough within the system that parents think that pulling them out must be a better option, note that once you leave you will get zero support when it comes to educating your child (including from NDIS). This prominent gap in services actually causes a huge issue, parents who are forced to remove their disabled children from school due to lack of support then sometimes bounce back in again when they realise they have no idea how to educate them. In and out, back and forth they go, and the toll it takes on families is huge. Sometimes you can get professional support to help you figure out how to teach your child, but I advise focussing your efforts on community support instead, and pray that those who have come before you will impart their wisdom.
So there you have it, part 1 of our 3 part ‘Finding Support series’. I hope you weren’t too disheartened by my take on the current government support scenario, but rest assured that this series does get more hopeful! I encourage you to check out Part 2: Professional sources to understand what therapists have to offer.