I was a part of the old (underfunded, unfair, fragmented, and inefficient, according to the Productivity Commission) state-run system.

We had good systems to work with people with intellectual disabilities and their families with a tiered approach of supports ranging from providing information (sometimes all that a family needed at the time) to being able to respond to emergencies at 1AM on a Sunday morning. Our service philosophy promoted increasing skills and maximising independence. All now gone! At the time, we were of the view that if disability funding were doubled, we would be able to meet all unmet need with a responsive suite of services. That would have put the national disability spend to about $25 billion. If you added some extra funding each year to reflect increases to the population, it would probably now be $30-35 billion. What has happened with the NDIS was totally predictable and preventable. If the Commonwealth had organised a series of workshops to identify and address unintended harmful outcomes, much of the current turmoil would have been prevented. This would not only have been less costly, but would also have prevented much of the dependency making of the NDIS.

Not that the Commonwealth Government wasn’t told. A 2012 paper written by Andrew Baker: _The New Leviathan: A National Disability Insurance Scheme_ predicted the potential cost blowouts and a 2013 National Disability Insurance Scheme Practical Design Fund submission: Potential Unintended Consequences of Self-Managed Support Packages and Appropriate Strategies and Safeguards to ensure People obtain the Full Benefit of Self-Managed Packages, examined the potential harmful outcomes to people with disability. Both were ignored!

Of course, the involvement of the Commonwealth Government in the development of disability policy and direction is not new. In framing the 1986 Disability Services Act, the then minister, Don Grimes, and the Commonwealth Government were informed by the report “New Directions” – a document which, although being produced after significant consultation, was, unfortunately, perhaps driven even more by preconceived ideology and a simplistic adoption of the work of international experts. One of the emerging dogmas can be interpreted as, “no matter the level of their disabilities, everyone can work".

It was to be a powerful new Act because it would assist Mary X, the cartoon star of “New Directions”, and who was described as having severe and multiple disabilities, to walk! She would also participate in one of the mythical jobs that would be available to people with intellectual disabilities – assembling computer components. It also saw the promotion of work opportunities for people with profound levels of disability which were actually exercises in “the hand that holds the hand that holds the hammer and the hand that holds the hand that holds the nail".

The lack of understanding by Commonwealth officers about the nature of disabilities and its effect on people was further demonstrated by the Department of Human Services and Health which developed demonstration projects that would promote the changes consistent with the principles of the Act.

Among these demonstration programs was Project 325, which sought to find alternatives for people whose only option was to live in nursing homes. In South Australia, and the same was generally true around Australia, nursing home accommodation was provided to that group whom we would define as having “severe and multiple disabilities”.

To give this term a pen picture, it would mean people who are totally dependent on others, who cannot walk or get out of bed, who cannot hold, let alone eat with, a spoon, who cannot communicate and whose level of intellectual capacity is, therefore, largely unknown. Left unattended, they would be incontinent, would dehydrate because they couldn’t pour themselves a glass of water and would starve because they could not feed themselves. In many instances, they require positioning so that they don’t develop bed sores and basic physiotherapy treatment so that they don’t get congestion in their lungs.

Project 325 saw the commitment by the Commonwealth Government to a maximum of 28 hours of support per week for people as an alternative to living in a nursing home. It was not until an assistant secretary of the department visited the Ru Rua Nursing Home in Adelaide and saw the level of disability of the people living there that, ashen-faced, he fully realised the inadequacy of 28 hours of support per week and the general dumbness of much of the Commonwealth thinking! In fact, people with these levels of disability often require 168 hours of support per week and may often require two staff at one time, for example in lifting and positioning.

Why has the NDIS gone pear-shaped? Because nothing has changed!

The views expressed in this article may or may not reflect those of Pearls and Irritations.