The NDIS is shaping up to mean different things to different people. If you’re wondering about some practical examples of how it could help, Matthew’s story might resonate, which illustrates how the NDIS aims to promote independence for people with disabilities and/or anyone needing support or care. It’s a hypothetical story, inspired by the real-life story of Tina Gulino, an NDIS participant in Geelong, who generously shared her story at the Queensland Disability Conference in Cairns last month.
Until he had a stroke at age 61, Matthew was living alone and working full time. As a result of his stroke, Matthew lost the use of his legs which meant he could no longer negotiate the stairs to his unit and needed assistance getting in and out of bed. Matthew felt like he had to move into residential care to get the support with personal care he needed.
But unfortunately the transition was not easy and it isn’t turning out to be the best option for Matthew. When he lived alone, Matthew always got to bed late, around 11pm. However, in the residential care complex he moved to, he now needs to go to bed at 2.45pm every afternoon because two staff are needed to help get him into bed, so this has to be done by the day staff before they go home at 3pm.
Matthew hates going to bed in the middle of the afternoon. He is physically uncomfortable being in bed for so long and is embarrassed when friends come to visit and find him in bed in this pyjamas. It isn’t normal for a man of his age. He would like to go out on the veranda to have a drink with his friends.
Another problem is that he can’t get out of bed to go to the toilet. He has to use bed pans and urinals, so he has also had to give up independence in toileting. Matthew has complained to management but nothing has been done. The manager has just explained that the staffing situation on the evening shift means they can’t arrange a later bed time for Matthew.
What has gone wrong? Matthew has lost a lot more than just the use of his legs. He has also lost:
– His ability to live independently. Without access to accessible housing with personal care support, Matthew had to move into a residential care facility.
– His ability to continue to work.
– His right to decide when to go to bed.
– His ability to have his concerns taken seriously. When he has complained, no action was taken to change the situation. His preferences no longer seem to matter.
– His feeling of dignity. He has to depend on staff assistance with toileting because he is confined to bed for more than 16 hours per day and cannot get himself up to go to the toilet. He also feels embarrassed when he is in bed and friends come to visit. He can’t even have that drink with friends because of a rule that alcohol is not allowed in the residential care complex.
Unfortunately, Matthew’s situation is not an isolated case. As a society, we haven’t got a good track record of promoting independence for people with disabilities. It’s shameful that as a community, we have institutionalised people like Matthew and placed barriers in their way.
Barriers can be physical or attitudinal. Teachers and parents may have lower expectations of a child with disabilities and not place as much emphasis on educational achievement. Lack of supports create another barrier which can prevent people with disabilities from engaging in their community. Good intentions have been used as a justification for some restrictions, because “it’s for their own good” or “they might get hurt”.
How the NDIS can promote independence
– The NDIS ensures that you (the person needing support/care) are actively involved in making decisions about your supports. This is where you NDIS can help promote independence.
– The NDIS recognises that you (the expert) know what you need and want, and what will work for you. An individual plan is developed with each person outlining your personal goals and what support you need to achieve these goals.
– The NDIS provides funding to you to spend on their support services. This gives the power to you, the consumer. You can spend you money on services that meet your needs and preferences. This is predicted to drive massive cultural change amongst service providers because consumers will be able to change to a different service if they aren’t happy with their current services – a privilege that was not enjoyed pre-NDIS.
The NDIS has not yet been rolled out in Matthew’s area but he already knows how he plans to use his funding. He is looking for accessible housing in his local community. He will employ two staff to support him getting into bed (from 10-11pm) and up again (from 7-8am). He’s also going to talk to his NDIS planner about going back to work. He wants to use some of his funding for taxis to take him to work. Matthew is looking forward to saying goodbye to the residential care facility soon and we bet any friends who drop around to visit will find the fridge well stocked and ready to entertain with a few celebratory drinks!