Submission 979
Dear Committee,
I am a parent of a young adult with a diagnosis of autism, who is a participant, supported by NDIS. I am also an Occupational Therapist and I work mostly with NDIS participants. I am deeply concerned by the speed and scope of the changes proposed and the blunt instruments of blanket funding cuts being proposed for some of the most vulnerable and disadvantaged people in our community. I have many concerns but will highlight a few:
50% cuts to social and community participation
This has potential for real harm for people on the scheme who rely on this funding to live ordinary lives with equal opportunities to leave home, like other Australians enjoy. In our situation, because of his disability, my son cannot drive a car (never will) and also cannot walk around the community, cross a road or take public transport without a support person. We rely on social and community participation funding so that he can get to and from his work skills program (and as parents we don’t have to take reduce our work hours more than we already do to do so), to get his bi-monthly medical appointment, to build friendships by scheduling in regular weekend catch ups with people he has met in the community to give him a chance of developing a network of informal supports (with a support worker to take him and scaffold interactions and keep him safe), to get to his card competition once a week which is his leisure pursuit, to get to the gym x 2 per week (to keep him healthy) and then many other incidental things like having a haircut (can’t do this without support), or even taking our dog for a walk. These things are essential for his life, health and happiness. They are simple things, without which, a parent would essentially need to resign from work, in order to support him to do. They are ordinary things which support his capacity building and mental health.
The social and community funding provides him with communication assistance, emotional regulation support, transport assistance, physical assistance, risk management and prevents social isolation, confinement to his home, and a lack of skill building.
Social and community funding is so much more than just companionship, which seems to be what the NDIA and media believe is happening when they observe a support worker with a person in the community. When the person is out in the community, they are often accessing and working on a myriad of skills like mobility, transitioning from home, regulating their emotions, talking to people, learning how to use money and the list goes on. These are things that are very difficult to teach in a home setting.
Outside of this, people with disability should be supported to access an ordinary life, and not be confined to their homes due to severe funding restrictions limiting their ability to access the community, where real life occurs. Many people don’t have informal supports who can ‘drop by’ and run them to the hairdresser, or take them to the gym.
The government believes it will save costs by cutting this funding bucket, but it will merely shift costs. The repercussions will be felt in the health system, mental health system and social services as people become isolated, depressed, lose skills, lose hope and suffer the physical and mental ramifications.
Submission 979
Schedule 4 – New framework planning
As an OT, I am deeply concerned by how this planning model seems to be designed around controlling costs and streamlining administrative burden. I believe the changes proposed are short-sighted and ill thought out. For years I have seen the damage and costs to the scheme,and to participants, that have been incurred through poor processes and poorly trained staff, attempting to make tick box decisions. The use of non-clinicians to administer an assessment that can somehow encompass all types of disabilities, is fraught with risk. People with disability deserve more respect and the dignity of a personalised understanding of their individual lived experience and functional impact of their disability. A standardised approach highly disadvantages those with fluctuating disabilities, rare conditions and essentially those that don’t have an obvious, physical disability. I have worked as an OT for over 26 years now and I can truthfully say that often it is the people with psychosocial or invisible disabilities who are the most disabled. But the use of a standardised assessment by non-clinical staff will highly disadvantage these people and again, when support and plans are insufficient, costs are simply shifted – back to families who reduce their productive work and suffer carer burnout, back to the medical and mental health system and back to Centrelink and social services. People with disabilities deserve assessment by trained professionals. Function is the at the core of occupational therapy and the agency should invest in appropriately trained staff to get the plans right, with the flow on effect of reducing the backlog, the appeals and the harm, and providing the longer-term outcome of improved functional capacity.
Functional capacity and whole of person assessment
Function cannot be separated from environment and context. While the concept of assessing someone without considering their environment may be appealing when viewed as a form of ‘levelling a playing field’, it is overly simplistic to think that this could be done in a meaningful way, and it highly disadvantages a person whose disability occurs through cumulative effects of social, sensory, cognitive and physical overload over the course of a day or a week. I don’t believe there is any literature that would support this concept of separating a person’s functional capacity from their environment, unless you are assessing a component of physical disability, for example, muscle strength. But even so, muscle strength that may be there at the start of the day or in a certain setting such as level terrain, may not be there as the day goes or when they need to use those muscles to ascend a flight of stairs, in their home setting. A person’s function is always impacted by the environment they live in, the people they have around them and the tasks they are required to do. We cannot separate a person out from this. I recommend the legislation is amended to reflect the assessment of function within context.
Mandatory registration
Submission 979
As a plan nominee and a person that self-manages my son’s plan, I have hugely benefited from utilising independent support workers, which has given us choice, flexibility and more oversight, than if we had to use an agency and registered providers. We have been able to find trusted people, some known within our local area and community, and this has given us a great advantage in allowing us direct communication and oversight of our workers. If all types of support workers had to register, this would mean the people we use would no longer work for us, as they are university students studying allied health, who would just work elsewhere, rather than jump through hoops and pay money to continue to work in the scheme. People who self-manage and shoulder the added responsibilities of this do this to allow them flexibility, choice and control over the people that care for them, and this should be protected.
In summary, NDIS has been life changing for so many. My own son’s plan has enabled him to learn so many skills and has supported us as parents to continue to care for him, and to get back to work to support him and our other children. The mismanagement of the scheme should not be paid for by the participants.
It is understood that the government is desperate to cut funds and to show the big outcomes of these cuts, but this is people’s lives. People who are disadvantaged, marginalised and to be frank, often suffering. No one would choose to have a NDIS plan if they didn’t need it. These are people desperate to live just an ordinary life and to have some choices in the way it is lived. Any changes to the scheme should be done more slowly, carefully and consultation with the disability community. These changes are huge, rushed and life changing. We appeal to you to knock back these reforms until the ramifications of these can be considered more carefully.
Thank you.