For many Australians living with a disability the National Disability Insurance Scheme (NDIS) has become such a regular part of life that it can be difficult to remember how life was before. For our son Dan, who has autism and an intellectual impairment, the NDIS is the way in which he receives the supports that he needs to participate in the community, develop his life skills and work towards living an independent life. For us the NDIS is so much part of our every day life that it can be surprising when we meet Australians who seem to have never heard of it – I guess there are some people who do live under a rock after all. Even if people don’t have a family member with a disability, it is still useful to have a basic understanding of how it works, because none of us know what is around the corner. We might become a carer for a family member or acquire a disability ourselves. If that were to happen, how would we like to live our life?
In the disability community we talk about NDIS plans all the time. Basically it is a document that sets out the participant’s situation and the goals they want to work on during the period of the plan. Most NDIS plans last for 12 months, although some people are now opting for 2 or 3 year plans. Each plan is developed after a review process and although we are becoming quite familiar with them, they don’t always go to plan. We had Dan’s last review before Christmas and you can read about that disaster here.
New plans are usually approved within a couple of weeks, but December is kind of an awkward time for a review because Christmas and New Year are not far away and offices just shut down. I was assured that it wouldn’t matter if it took a little longer because Dan would still continue to get support. So we waited and waited. Phone calls and emails went unanswered. There is a digital portal for the NDIS, a bit like the one for Centrelink, where we can access Dan’s plan, check what invoices have been paid and keep an eye on the budget. That’s how I found out that they had put an extension on Dan’s old plan until they got the new one finished. We’ve had extensions before – it just ensures the funding continues so that support doesn’t just suddenly cut out. It was an extension for 365 days! And they never bothered to tell me that. I had to find that out for myself. With such a long extension we weren’t quite sure what was going to happen. Would we have to wait a whole year?
Fortunately the new plan was approved by the end of January – well, kind of. Covid 19 has played havoc with disability support and many plans are just being rolled over. This means they give you exactly what you had last year. At least you don’t get any less, but if you were looking for an increase it’s not good news. Every year we have been slowly expanding Dan’s plan and this time we were applying for funding for Dan to transition into independent living. We haven’t heard back about that yet. Applications for housing go to a separate panel for approval, but we did get one extra thing we were asking for.
Learning to understand how a plan works and how to make the best use of the plan takes a while. In fact, it takes a long while and I think this is one area where families need a lot more support than they are getting currently. The very first year you go from having almost no support to suddenly having access to a lot of services, but it takes quite a while to get your head around it. For so long parents and families have been so used to doing everything themselves and just used to going without. You don’t go out because it’s just too hard. I’ve met parents who haven’t been to the movies for years – something many people just take for granted. It took us a long while to realise that hey, we could get in-home support so that Dan wouldn’t have to tag along to things he finds utterly boring, such as the Ballet (I don’t really understand that myself!). The idea of something approaching a normal life is a radical way of thinking for us.
The plan document takes up quite a few pages but it is the last couple of pages that contain the most important stuff – the amount in dollars you have been allocated to purchase the support you need. Sometimes you might hear stories in the media that throw around big figures. You have to remember that almost $80 million is provided every year in unpaid care by family carers. This care is now slowly being provided by support workers. Providing paid care around the clock for people with disabilities is not cheap. Every year the NDIS puts out a price guide which specifies the maximum amount that service providers can charge for each specific kind of support they deliver and this will vary depending on the level of disability, where the support is taking place, whether it is one-to-one or in a group or even what day of the week it is. Weekends are very expensive, but we want to ensure that it is a high standard of care. However we don’t just get given a big bucket of money to spend however we wish. The funding is divided into categories and while there is a reasonable degree of flexibility, there are also some restrictions. Whatever support we purchase must be related to the goals we have set. In Dan’s plan the funding falls into two main categories: Core Supports and Capacity Building Supports.
Core Supports help with my everyday activities, my current disability needs and to work towards my goals.
Core Supports take up the largest proportion of the funding and is used to purchase the kind of supports that Dan needs for daily life. The bulk of this is spent on support workers who assist Dan to participate in activities in the community and in the Yellow Bridge day program. They also help Dan to take care of himself when he is in respite. We can also use the Core Support funding to purchase consumable products such as bed wetting mats or technology. Dan is pretty active so we have a GPS tracker on the list.
A small proportion of the Core Supports is specifically allocated as a “contribution” to transport although it doesn’t come anywhere near the true cost of transport. Dan cannot use public transport independently and public transport in Toowoomba is kind of limited anyway. We have used taxis occasionally, but the thing is, taxi drivers are not support workers. Taxis might be alright for people with physical disabilities, but it can be risky where there is an intellectual impairment. We often rely on a support worker to provide transport – it costs more, but they know Dan and what safety steps to take.
Capacity Building Supports
My Capacity Building Supports are intended to build my independence and reduce my need for the same level of support into the future.
Dan’s Capacity Building funding is allocated into five different areas. It is quite funny how government agencies love to come up with fancy complicated names for things. Improved Daily Living is just a fancy name for therapy and is used mainly for speech and occupational therapy and psychological support when needed. Improved Life Choices is about choosing who manages the plan. There are three options: NDIA management; Plan Managed; or Self Managed. Self Management is pretty self explanatory and gets a definite NO from me. Most people start out being NDIA managed, as we did for the first few years. It just means the agency who run the NDIS also manages your plan and pays the service providers. It works fine as long as you use service providers who are registered with the NDIS but it can be limiting if you want to purchase products, say from Big W or Apple. We have now moved to being Plan Managed which means we have a plan manager who organises the submission of invoices to the NDIS. It gives a bit more freedom, especially in the purchase of a GPS tracker.
Capacity Building also includes employment support and support coordination. We hope that one day Dan might be able to have some kind of employment, although given the employment situation during Covid I’m not holding out much hope. One of the greatest changes in the last year has been to get a Support Coordinator. Everyone should have one. It has been the best thing ever. She helps locate service providers, explains NDIS processes, organises service agreements and reports, liaises with the NDIS and keeps an eye on the budget too. As I said, best thing ever.
The last area of the Capacity Building is a new one for us this year – Improved Relationships – and no, this is not about helping Dan find his true love. Dan is very active and impulsive. Keeping him safe out in the community has been a big concern. When I am out with Dan I hold onto his arm so that he cannot get away from me or run across the road and get run over. I have repeatedly asked that support workers hold onto Dan when they are out in the community, however the NDIS sees this as a “restrictive practice.” Ask any parent with a child like Dan – we see it as sheer common sense. Of course, common sense isn’t all that common anymore. So to keep Dan safe we have to consult a specialist behavioural support practitioner and develop a special behaviour plan. All up this is supposed to take 120 hours. Feel free at this point to roll your eyes, shake your head or bang your head against a brick wall. Bureaucracy – don’t you love it.
As you can see it takes a bit to understand the terminology and where different supports fit within the plan. And that’s before you’ve even started to spend any money. We are yet to add housing and I suppose that will be another category with its own fancy name. Once you finally get the plan, then you have to sit down and work out your plan for the year, put it into action and make sure you don’t blow the budget. Managing Dan’s NDIS plan is almost a full-time job in itself.
Who will do this when we are no longer around?