This article gives an insight into the 21st century thinking of the 'we know best brigade’ when it comes to people with intellectual disability, particularly those who are severely and profoundly so. In fact the mindset on display here is almost indistinguishable from that of the 'we know best brigade' of the late 18th, 19th and 20th century. A mindset which in fact gave rise to the large residential institutions wherein so many people with disabilities were incarcerated and de-humanised, but deemed in their best interests by the 'we know best brigade' of the day.

I cannot imagine such a piece being written with respect to people with physical disability who are able to make choices as to where, with whom, and in which of the myriad 21st century permutations of residential accommodation they choose to reside.

In the UN Convention on the Rights of Persons with Disabilities there is no clear declaration that disability is a perfectly legitimate state of being which, in my view, makes the Convention foundationally flawed at first instance. However, that said, when speaking of residential accommodation article 19 says people with disability should have the same choices and options in relation to residential accommodation as is available to the general population. There is no, “however”, in Article 19 , that excludes people with intellectual disability from having those same options and choices.

Thanks for the warning Professor Bigby but parents and families of people with disabilities are not the enemy of good sense. In fact history attests to the fact that it has invariably been parents and families of people with disabilities who have been in the vanguard of disability reform and fiercely so. The first Ombudsman was established because of the activism in the 1950s, 60s, and 70s of parents and families of people with disabilities.

Ultimately it falls to our political leaders to lead the community on the issue of disability reform. Attitude reflects leadership and Hasbeen who has posted previously gives a clue to where the failings are in our leadership.

Footnotes / references, Prof Bigby?

Thank you for a timely and illuminating article. As a person with a significant disability, an academic, experience in advocacy, advocacy development, policy advice, in disability services and in protective adult guardianship jurisdictions, I wholeheartedly concur with Professor Bigby. Her comments are backed by an extensive body of research and practice and I wish more people with her background would speak up publicly about this NDIS proposal as driven by a market-based belief system that cannot deliver the social inclusion goal that the National Disability Strategy aims for. It is precisely because of a continued ignorance about the human needs of people with disabilities, such as expressed in some comments here, that we need something much better than the present proposal. Based on values that support Good Lives of people with disabilities. The irony is that at its core achieving them depends on a much greater generosity of spirit, and grasp of social justice than appears prevalent. A civil, sustainable society depends on our full inclusion and if you let us than this would be our contribution to a greater wellbeing for all. Prof Bigby is wrong on one score: the Commission's report is not silent on integrated or segregated support. It says that which to adopt is to be assessed by their relative cost-effectiveness. Signing the UN Convention is one thing. Understanding its raison d'etre and substance is obviously quite another. We all lose if we think living in a bean counter society is alright for some.

From everything Erik says about himself, it is clear that while he may be a person "with a significant disability", he does not have a severe to profound intellectual disability. Like many members of the community, he therefore may very well have no idea about the particular needs and individual circumstances of people with severe to profound ID. People with severe to profound ID don't go around telling people like Erik what is best for him in his particular individual circumstances, claiming to know solely on the grounds that they are "disabled too", and it would be good if occasionally a similar level of "minding one's own business" could be displayed by people with physical disability towards those with intellectual disability. As for Erik's concerns about people with disability being forced to live in a "bean counter society" - why not? All the rest of us do!