Divided over disability care
While there was consensus on how to create a more inclusive society for people with disability, the commissioners in the comprehensive inquiry that wrapped up last month were seriously divided on key recommendations. And that means despite the government’s initial enthusiasm for solutions from the royal commission, it may simply kick the report into the long grass, or the too-hard basket.
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability was no small undertaking, costing $600 million and spanning four-and-a-half years. The timing of its report is important, as it coincided with the separate review of the National Disability Insurance Scheme – the conclusions of both will surely be important to the government’s deliberations on detailed policy responses.
The big changes the royal commission proposed for government processes are probably the easiest to implement, though they need to be backed up with substantive policies. These structural changes include the establishment of a disability portfolio, with a designated minister and department of disability equality and inclusion.
Comprising 12 volumes, 6845 pages and 222 recommendations, the report makes clear “there is not much point to a lengthy royal commission if its recommendations do not lead to transformational change”. Nevertheless, it is heavily aspirational and short on practical steps to achieve the desired outcomes.
The essence of the commission was it considered the “inherent dignity, individual autonomy and independence of all people with disability as fundamental to Australia becoming a more inclusive society”. That is, those living with disability should have “the right to live free from violence, abuse, neglect and exploitation”.
The commission was exhaustive in its focus on the individual experiences of a host of people with disability. To me it seemed an almost impossible task to find among these sometimes horrific and mostly disturbing experiences the degree of commonality needed to design appropriate broad policy responses. One theme to emerge from the individual testimonies was the desire to be treated like any other person in education, employment, accommodation and socialising.
The report envisages an inclusive future, emerging from the views of the witnesses with disability, their families and carers, including their desire to be safe and have their human rights respected; to have disability treated as part of human diversity; to live, learn, work, play, create and engage in inclusive communities; to be empowered to have choices and independence; and to belong, and be respected, valued and able to contribute.
These are commendable aims, but the key issue is support. Specifically, what support can be supplied case by case when the sector is plagued by failings similar to those in the other care sectors – namely, staff and carers who are underpaid and undertrained, in many cases, such that the needed support is difficult to define and to deliver cost-effectively.
High-needs people with disability may require one-on-one support. This raises the question as to how some of the commission’s recommendations can be implemented without increasing costs. I fear that for some disability care providers, an increased focus on cutting costs may lead to more neglect. And it is important to distinguish between the physical and mental, when aiming for “mainstream engagement”, as clearly the necessary policy responses will be quite different.
The crucial areas of disagreement among the commissioners related to the desirability of special schools and group housing for people with disability – heavily debated issues in the sector. Some commissioners wanted to phase out both, based in part on research suggesting including children with disability in mainstream educational settings is beneficial for them and can reduce prejudice among their non-disabled peers.
Segregation in education has long been a touchy subject. I recall in my high school days so-called “special ed” students were bundled into a “general activities” class away from the rest of us. This reflects what has been a strongly held position among some parents and teachers, that it is unfair to include students with intellectual disability in classes where they may be confused by the content and other students may be held back. In such cases, students with disability may face embarrassment or even abuse. Parents have been known to threaten to remove their high-performing students and teachers may struggle to cater to all in such diverse classes. Hence the demands for special schools.
The head of the Australian Special Education Principals’ Association, Matthew Johnson, said that phasing out special schools within 30 years could cost billions of dollars, disadvantage children with disabilities and reduce choice for families.
The minister for the National Disability Insurance Scheme, Bill Shorten, has declared the issue a matter for the states, and New South Wales and the ACT have said they would not phase out special schools. Surely the national government has a responsibility to set national standards. States may be responsible for schooling, but the overall care and responsibility for the welfare of children should be national.
The split between the commissioners resulted in two proposals. Three of the six advocated phasing out special schools by 2051, with no new enrolments from 2032. The criticism here is the time line is too long, and means children with disability entering school today would be separated from their peers for the whole of their school life. Some disability groups have been arguing for a phase-out in the next decade.
The alternative proposal from other commissioners is to maintain special schools but wherever possible locate them close to mainstream schools, creating partnerships for participation in joint activities. This has been criticised for sustaining special schools, and failing to guarantee inclusion.
However, there remains a strong argument in favour of special schools with appropriately trained teachers and proper resources. There are still concerns about bullying and concerns that personal needs are still met. Specialist training for mainstream teachers is a fundamental requirement for a more inclusive school system.
Clearly, to many, segregation is anathema to progress. The issue applies to employment as well as education. The idea of special workplaces became stigmatised by the references to “sheltered workshops”. However, much of the discussion downplays the significance of how self-esteem responds to receiving a pay packet connected to employment. One person working in the field says it boils down to this: “We have employees on $3-$4 per hour, productivity-zero, but social interaction, 100%. Where do they factor this into their recommendations?” Clearly this is never going to be a one-size-fits-all situation.
To be denied this experience would see many people with disability simply forced into day care activities, despite the fact many are able, with support, to participate in mainstream employment with supportive and understanding employers.
That said, it needs to be recognised this is a competitive world. The disability group of which I am a director was fulfilling relatively low-skilled work for a local manufacturer, putting stickers with wiring diagrams on cover plates. The manufacturer then found a cost advantage in shifting the work to China, where the diagram could be printed on the plates rather than using a label. This caused much disappointment to our employees.
The other main area of disagreement among commissioners was in relation to group housing, where the report recommends phasing out group housing in 15 years.
Again, the challenge in effective group housing is providing the necessary support, especially the potentially expensive support for those who need one-on-one care.
An immediate change proposed is to end what is known as “third line forcing”, that is, to rule out an organisation being both landlord and support provider.
However, this thinking is particularly short-sighted and ignores the important reality that if the one organisation is the employer, who also supplies accommodation and support, that provider really gets to know the individual well and is potentially better able than separate entities to cater to their needs.
It also needs to be recognised that the transition from living in a group home to having to find alternative accommodation may be difficult. It is not a simple alternative to just go back to the family home, as many parents fear tension with other siblings or simply find it hard to manage the needs of their child with disability. Moreover, it is not an easy choice to just go and rent, as many landlords refuse to rent to people with disability.
More broadly on housing, it is notable that for organisations to build a group home, increasing layers of approval are required – specialist disability accommodation SDA) standards, councils, the NDIS and so on – that significantly raise the cost of building. This is very hard to understand at the time of a national housing crisis, that such red-tape requirements are making it harder to build.
One obvious requirement for improved disability care, overlooked by the royal commission, would be to require mandatory minimum training qualifications for the staff or care providers. This would also probably require increases in wage rates.
The budgetary impact of necessary changes to improve disability care is yet to be quantified, which may be an even more constrained process against the background of the blowout already forecast for the cost of the NDIS.
An effective response to disability care requires a whole-of-society response, where attitudes to the disabled need to change, on so many levels.
John Hewson is a director of Challenge Southern Highlands.
This article was first published in the print edition of The Saturday Paper on October 14, 2023 as "Divided over disability care".
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