Winter is Coming… Scratch that, it’s already here…. (without Jon Snow...
May 14, 2019
May 9, 2019
As the rollout of the National Disability Scheme (NDIS) is approaching completion in South Australia, it’s timely to look at some of the core ideas of the Scheme. Our clients at Attuned Psychology include participants or have family or friends who are receiving funding to support their disability through the NDIS. I wonder though, how many know of the history of the Scheme and why expectations have been high for better outcomes for the almost one in five Australians who report living with disability.
There have been many who have been disappointed by the experience of planning, or in the funding outcomes they have received from the NDIS. I don’t want to dwell on this and can only hope, as do most of us, that in time processes will improve and the Scheme will meet the aims of most into the future. Let’s consider though, why the NDIS is such a ground-breaking change for people with disability. Prior to 2016 (yes, it’s only been that long!) services for people with disability were found by the Productivity Commission to be “underfunded, unfair, fragmented and inefficient”. Government funding was in the hands of service providers, and there was too little to go around so many missed out completely. The initial rollout of the Scheme highlighted previously unmet need for services for children with Autism Spectrum Disorder in South Australia. In addition to a considerable increase in funding, core changes that were brought about by the NDIS allowed people with disability to receive funding based on their individual need (rather than collective need), and to control how it could be spent rather than having service providers decide this for them. As well, NDIS funding is directed to early intervention and capacity building, rather than provided only when needed urgently. I think we can all agree these are all good things!
One of the big challenges for new entrants into the Scheme has been to understand and relate to a different way of thinking about disability. The NDIS is based on an understanding that disability isn’t a health problem but is a general term that reflects how someone is limited or restricted in their ability to carry out daily activities and participate in everyday life, not just from time to time but longer term. Reasons for disability are complex. Physical or cognitive problems experienced by the person may affect mobility, communication or learning. However, many hurdles preventing people with disability from being included in activities that others take for granted are environmental (for example, lack of disability access stopping someone from going to the doctor, studying or seeking employment) or social (for example, lack of understanding leading to negative stereotypes or discrimination).
I hope I am giving some context to the language of the NDIS which can be a struggle for many to understand. Terms like “inclusion” and “participation” are core to the Scheme and may require a change in thinking about how people with disability or their advocates ask for funding. The following are some key terms used by the NDIS that I will attempt to decode for those that aren’t familiar with them:
To be eligible to receive funding from the NDIS, a person must have a disability that is permanent and significant. This means that, in addition to describing what type of disability they have, applicants also have to describe how it affects their ability to take part in day-to-day activities and how they do them. The NDIS aims for people with disability to be able to lead “an ordinary life”, that is a life that is comparable to everyone’s.
I have already used these terms a lot so hopefully you can see that these terms relate to how well a person with disability can take part in and feel included in their local community. Can they join a sporting or special interest group to pursue their passion, or can they get to the local shop or enrol in the local school? These are all examples of social inclusion. Economic inclusion (another term used by the NDIS) relates to whether the person with disabilities, or their caregiver, can take part in work. The term “mainstream” is used to describe facilities and services that we all use, in contrast to disability services which target only people with disability.
The planning process requires people with disability, or their advocates, to think about their goals in life and what it is they look forward to achieving in the future. Goals can be small or big. For children goals might include things like learning to be more independent with daily activities, learning social skills to support friendships (and social inclusion), or communication skills to help them to express themselves better. Adults may want to be more independent, to make new friends, or to study or find a job (economic inclusion). The planning process requires participants to break down longer term goals – that is ones that might be achieved in a few years – into smaller steps or short-term goals, and to think about supports that are be needed to achieve them. The term capacity building refers to the way in which supports help people with disability grow their skills to reach their goals. Supports might involve allied health therapies such as speech pathology or physiotherapy. Psychologists are often asked to help children and adults to learn social skills or to manage emotions or behaviours that get in the way of goals being achieved. Funding might also allow the person with disability to get help from a support worker to learn specific skills such as cooking, or to access a community activity.
The term early intervention means stepping in as early as possible to limit negative impacts of disability or to maximise skill development and independence. The NDIA see early intervention as a way of reducing the need for support (and funding) in the future. Most commonly the term early intervention is used in relation to young children and evidence shows that therapies to support early childhood development can lead to better outcomes for children at school and later life. This doesn’t mean that early intervention can’t also apply to adults. In this case it can refer to the need to act early to prevent the development of a problem or issue relating to a person’s disability (particularly in the case of people who acquire their disability later in life).
This term, which anyone transitioning to the NDIS will know well, is the way that the organisation that runs the NDIS (the National Disability Insurance Agency) decides what things can be funded or not funded. It is important for the person applying to the NDIS to argue that the services and equipment they are asking for are necessary. Will they help them to be more independent or will lead them to engage with their community, make friends, or start work? As well, and this is where it can get complicated, they must also argue that the services of activities or equipment are reasonable. The NDIS explains that to be both reasonable and necessary, supports must be related to the person’s disability (not to day-to-day living costs), be good value for money, and consider the informal care and supports provided by family, friends or the community that everyone can also benefit from. Informal support is free of charge and therefore different from the formal support provided by care workers or allied health professionals. It is easy to see that there is a lot of room to move in this definition, which is why many disputes about NDIS funding centre around what is or isn’t reasonable or necessary.
This is by no means a comprehensive overview of all the technical terms that are used in the NDIS, but hopefully this helps to demystify some of the language that may be new to many.
The NDIS have lots of booklets, fact sheets and checklists that can help participants (potential or otherwise) to understand and make the most of the NDIS
For those starting the process of putting together an NDIS plan for funding, or revisiting an existing plan the planning workbook is a good resource:
Carers Australia encourage family or friends who provide informal support to a person with disability to be assertive in having their own needs – including goals and aspirations – included in the planning process, as well as to ask for help if this is needed to support their ongoing capacity to care into the future (yep, I’m using the language of the NDIS). It’s worth remembering that one of the important expectations of the NDIS when it was rolled out in 2016, was to support more carers to return to paid work if they wished to do so. Carers may not know that they can complete a carers statement to describe the impacts of care or can ask for a separate interview if helpful.
Carers Australia provide examples of carers statements and a checklist to use to help with this
The psychologists at Attuned Psychology can support adults and children who are journeying through the NDIS, if they have chosen to self-manage their NDIS plan. That is, if they decide what supports they buy to meet their plan goals or have a plan manager other than the NDIS that supports self-managing. To make a time to see one of our psychology team, feel free to contact us here or call our friendly administration staff on 8361 7008.
Dr. Angela Crettenden
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