The last few weeks have been quite stressful as we finally moved into our new house and completed our third plan review with the NDIS. Moving house is surely one of the top ten stressful events in life. You would think that after 18 previous moves, I would have this down pat. Nope. It was just as chaotic and stressful as ever, and after weeks of packing, moving and unpacking countless boxes, I have been feeling quite exhausted. I have been so tired I have barely done any reading and to top that off we are currently in a period of slow internet. The first week after our move the internet service was perfectly fine. But as a result of changes to the fixed wireless service, which I sincerely hope are temporary, it has almost ground to a halt. The speed is painfully slow. Some days we struggle to even read a blog post, let alone write one. Just as well Bec and I are on a study break over Christmas and New Year.
In the midst of all the packing and moving, we also had to contend with Dan’s NDIS review – another stressful event. At this point we are still waiting to see the outcome of that review and Dan’s new plan for the coming year. It is a particularly anxious time as we never know when the new plan will start until it does. This is one of my particular grievances about the implementation of the NDIS. Dan’s plans have never started and finished on the same date every year. Each time, the new plan has started early, meaning that Dan loses time and funding still available in the previous plan. It’s a very sneaky way of trying to save money which actually deprives clients of funding. It’s also an anxious time because you never know if the NDIA will consider Dan’s goals and requests for support as reasonable and necessary. To support Dan’s communication needs we are hoping for a considerable increase, but we won’t know until we see the plan.
Despite my grievances, and there are a few, the National Disability Insurance Scheme (NDIS) is a social change that is well overdue and it is providing support for Australians living with disability. It is an ambitious undertaking and I don’t think people realised how many people with disabilities there actually were out there in the community being cared for by their families. There were many senior aged people still caring for their middle-aged disabled children. Many of these had probably fallen through the cracks and were receiving very little support, if any.
Dan was able to join the NDIS when the scheme rolled out in Toowoomba in 2017 so we are approaching the end of our third year. To be honest, it has been quite stressful and has created a lot of extra work for me, but in the long run, we hope that it will create a life for Dan so that we won’t need to worry (at least not as much) about what happens when we are no longer around to care for and advocate for Dan. At this stage, I feel there is still a long way to go before families can feel confident about their family member’s future and welfare.
Our approach to the NDIS has been to focus first on Dan’s life Mon to Fri, then slowly extend that. When trying to visualise a life for Dan I try to think about what the typical 23 year old young man does. He is either studying or working (or looking for work). So first of all, we focused on creating a fulfilling and purposeful weekly schedule for Mon to Fri. With Dan’s NDIS funding, we have been able to purchase support time from a disability support provider. This is a mixture of group support and one to one support. In the group support, Dan joins other young people with disabilities and does peer- appropriate activities, like bowling, going to the gym, cooking pizzas. During his one to one time, Dan has the opportunity to do things he is personally interested in, like swimming and bushwalking.
Then we expanded his support to include social activities on the weekends and respite either at home or in the community. Dan and some of his mates get together for a boys group that meets monthly for social activities. Dan has also had some one to one support on the weekends to do thing he likes and give us time off. One of the downsides though, is the lack of spontaneity. People without disabilities are able to make plans on the spur of the moment and just do it. It’s not that easy for Dan. A social activity for the boys group requires weeks of planning and support needs to be rostered well in advance. Even for us, if we wish to have some respite, we have to plan it well in advance. I can’t do a girls night out on the spur of the moment. I would need to have at least a months notice in advance so I can organise support for Dan. The NDIS may provide the funding, but a lot of planning, decision-making and budgeting is required by families to make it all work. Who will do this when we are not around?
For the coming year, communication remains a top goal for Dan. Many people probably take their ability to communicate for granted. Imagine how difficult your life would be if you were not able to communicate your basic life needs, let alone your desire for social and leisure activities. I often describe Dan as non-verbal. It’s not strictly true, but it’s often the easiest way to describe Dan to people who don’t know him. Dan can say quite a lot of words – just not together, in one sentence. He can answer a question, yes or no, but he tends to answer every question with yes, so there is some doubt about the accuracy of the answer. Dan also loves to sing. He can sing whole songs but cannot have a conversation or even request something without assistance. Of course, we have learnt to understand Dan’s cues and we know what he likes or needs. But people who don’t know Dan well have no idea. Good communication is essential for everybody, especially people with disabilities who are dependent on the support of others for everyday life.
Last year we were able to use Dan’s funding to purchase some communication software. It was an interesting experience that highlighted the need to have Dan’s plan managed by a Plan Manager rather than the NDIS. Initially it was good to have it managed by the NDIS while we were getting the hang of things. And it worked well except for one thing. When the NDIS manages the plan, you can only use providers who are registered with the NDIS. For the most part, this isn’t a problem. I have always been careful about which providers we select for Dan. I want to make sure they are experienced and know what they are doing. There has been such a flood of providers start up since the NDIS, and sadly, some of them are just in it for the money. This year we used a Plan Manager and it has provided more flexibility, especially when purchasing items for Dan’s use. It also allows us to engage a therapist or service provider who may not be registered with the NDIS. Some service providers are finding working with the NDIS to be quite onerous and are choosing to leave the scheme. If this were to happen to one of Dan’s service providers in the future, Dan would still be able to continue with the people who know him and with whom we have developed a good working relationship.
So now we are just playing the waiting game. We have had the meeting, answered all the questions, talked about Dan’s goals for the coming year and the level of support he will need. The service providers have submitted their reports and fortunately we are all on the same page about Dan’s need for higher levels of support. Fingers crossed it will be a good outcome. If not, we will be requesting a review. And unfortunately, that can take up to nine months. I would like to feel confident about the new plan – but I’m not. I’ve met many parents in the same situation and heard too many stories, so I know you have to fight for everything. Who will do the fighting when we are no longer around?