A great day in the history of Australia

Thursday, 11 July 2013

Monday 1 July 2013 was a historic day in Australian history, marking the beginning of a new approach to how Australia provides support and care to people living with disability.

Years of hard work and advocacy by many people culminated in the start of the National Disability Insurance Scheme, when DisabilityCare Australia opened its doors for the first time.

The fundamental significance of this new approach is that the welfare model of disability, which gradually superseded the ‘charity’ model, will itself be replaced by a model based on human rights; and this has been enshrined in legislation.

The cornerstone of the new approach to disability is the funding model. Instead of organisations being directly funded to provide support to people with disability, under the NDIS people with disability will receive individual funding and will be free to spend their allocation in whatever way best suits their individual needs. So, for example, where one person may choose to pay a service provider to provide his or her support, another person may choose to purchase suitable home modifications.

Each participant in the NDIS will be assisted by DisabilityCare Australia to develop individualised plans: a plan that sets out the person’s goals and aspirations and a plan which describes the supports that will be needed for the person to achieve their goals. This new approach to disability support is laudable as it recognises that every person has different aims in life and it considers each participant’s individual needs and desires.

Of course this change brings some risks. The day might come, for example, when an investigative journalist or ‘shock jock’ expresses outrage about how taxpayers' money is being spent, simply because a person with disability chooses an unusual or innovative way to meet his or her individual aspirations.

A more serious risk is that the publicity and hyperbole that has accompanied the introduction of the NDIS will give people with disability unrealistic expectations of what to expect when the scheme is fully implemented in 2019. In a speech she gave at the DisabilityCare Australia Conference in Melbourne on 23 June 2013, the Minister for Disability Reform, Jenny Macklin, related a scenario of how the scheme will operate. She described a situation in which a 38 year old man with multiple sclerosis is living with and being fully supported by his mother. The mother is worried about how her son will continue to be supported as she ages. They visit DisabilityCare where a plan is developed to provide support to meet his needs over time. The plan includes supports that will help the mother in her caring role as well as helping her son directly. The plan also includes a discussion about the future - with support to allow his mother to reduce the number of tasks she performs for him over time, and for the man to move into formal care when needed.

The problem with this scenario is that, in its present form, the NDIS does not provide funding for capital works such as the residence for formal care into which the man may eventually have to move. At present some people with severe and complex disabilities find themselves housed in nursing homes due to lack of suitable alternatives, even when they are far younger than the majority of the residents. Others may actually be lucky enough to find suitable formal care facilities, after they have negotiated long waiting lists. It is important to recognise that the NDIS will not automatically resolve issues relating to the lack of infrastructure.

Other looming challenges for DisabilityCare Australia in administering the NDIS include:

• definitions of eligibility;
• the inherent disadvantages for people with disability living in rural and remote areas;
• the problems created for Indigenous people when they have to move far from their own communities to go to hospital or move into facilities to receive specialist disability care;
• lack of appropriate workforce in rural and remote areas; and
• the needs of the families and carers of people with disability.

On the question of eligibility, the NDIS website states that when the scheme is fully operational it will provide support for around 460,000 people who have a significant and permanent disability that affects their communication, mobility, self-care or self-management. This may prove to be an under-estimate when the number of people with an eligible disability in rural and remote areas is clarified, particularly the number of people living in remote Indigenous communities. Another issue related to eligibility is the age limit of 65 for people entering the scheme. This may well lead to injustices for people who acquire a disability when aged 65 or over, as the aged care system is unlikely to provide comparable levels of support for disability.

Among the disadvantages for people with disability living in rural and remote areas is the fact that in many areas the services, supports and skilled professionals needed are simply not available, thus necessitating much travel and additional expense. The use of ‘fly-in fly-out’ to provide the missing workforce may be appropriate when bringing in specialised professionals who set up programs that can be managed by locals, but it is fraught with problems where services that require any degree of rapport or continuity are concerned. A challenge facing DisabilityCare Australia will be to find innovative ways to overcome the problems caused by lack of suitably trained workforce in rural and remote areas.

When Indigenous people have to move far from their own communities to enter hospitals, nursing homes, or obtain specialised disability support, they often lose contact with their ‘country’ and communities and this can lead to them losing hope and the will to live.

Even though it has been recognised by the architects of the NDIS that proportionally greater funding will be needed for rural and remote participants, the present incarnation of the NDIS will not in itself solve these serious problems.

DisabilityCare Australia will also have to understand that, particularly where children or young people with disability are concerned, the needs of the family or carer may be almost as important as those of the person with disability. The relentless pressure of caring for a child with disability may bring great strains to a family, including siblings. DisabilityCare Australia will need to provide sensitive oversight of participants' plans so that undesirable side effects on families and carers are minimised.

Despite these reservations, the NDIS can certainly bring about a huge improvement in the lives of people living with disability in Australia. The scheme is only in its infancy and DisabilityCare Australia recognises that there will be much to learn as the scheme is implemented in the launch sites.

John Franze

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