Opinions - Professionals

"WELL SAID RASAID!" Submission to the Productivity Commission by Lyn Allen, Parent, and Vice President of RASAID Inc., NSW. 2010

Professor Chris Oliver, Professor of Neurodevelopmental Disorders. 2010.

Emeritus Professor Trevor Parmenter, Foundation chair of developmental disability, Sydney School of Medicine. 2010

                                             Caring families need our support

I was disturbed by Paul Lynch's imputation that Jenny Rollo, the president of RASAID, was lying about claims that the minister had supported her organisation's proposal for cluster housing for their severely disabled family members (''Housing scheme for disabled adults in doubt as minister backs down'', March 1st 2010). In all my dealings with Ms Rollo I have found her to be a person of the highest integrity and probity.

The root of the current impasse, which is only the tip of an iceberg, is who will care for the many severely disabled people living with their families, many without government support, when these families are too frail to continue this support. The families belonging to RASAID have proposed a way to meet the problem. They are not looking for a government hand-out, but have dedicated themselves to a solution they feel meets their needs. Nor are they seeking to abandon their adult children to a government-run facility.

Internationally, there is a shift towards empowering people with disabilities and their families to devise ways to meet their needs - ways that suit individual needs and preferences. Some Australian governments are supporting this trend by providing financial support directly to people with a disability and their families. Western Australia has followed the individualised funding model with good outcomes economically and for quality of life.

We desperately need more support for family initiatives.

Max Jackson’s Response to the ‘Shut Out’ Report

This is from Max Jackson who is a highly experienced consultant providing training and consultancy services to government funded sector, voluntary and private sector organizations in Victoria. He is the former CEO of Kew Cottages. Max has written a “Response to the ‘Shut Out’ Report”. This report is the National Disability Strategy Consultation Report prepared by the National People with Disabilities and Carer Council. It was released in September 2009. In his response, under 3 iv entitled “Real Choice”, Max says:

'The Report made references to choice as a fundamental freedom which few people with disabilities are able to exercise. It failed to note, however, that while choice is promoted by governments, policy makers and advocates as something that should be available to people with disabilities, the experiences in Victoria make a lie of this promotion. As an example, the Victorian State Disability Plan 2002-2012 “reaffirms the rights that people with a disability have to live and participate in the life of the Victorian community, with the same rights, responsibilities and opportunities as all other citizens of Victoria”. Yet, since 2002, there has not been any increase in residential services, other than for those people exiting institutions. Indeed, there has been a condemnation of the small group home or Community Residential Unit model by many of those in positions of power and influence. The concept of housing similar to aged care villages, or the new housing development concept of gated-communities is shunned, and hostels and small modern amenity institutions are not to be mentioned, despite these accommodation models being available to other sections of the community. Thousands of adult people with disabilities have no choice but to live at home with parents. The parents have the Clayton’s choice of either abandoning their sons or daughters or providing support and accommodation.'

The concept of real choice by way of alternative service types must be promoted as a must in the NDS (National Disability Strategy) and the NDS must condemn the narrow, self-centred thinking of the philosophical purists and advocates who seek to deny real choice in service options.

On the Wellbeing of Intellectually Disabled People

Robert Cummins is chair of psychology at Deakin University and his colleague Anna Lau is from the Polytechnic University in Hong Kong. They are experienced researchers in the field of human well-being. One of several papers they have published on this topic concerns the wellbeing of people with intellectual disabilities and was published in the Journal of Applied Research in Intellectual Disability 16 pages 145-157 (2003).

The paper points out the geographic location is not the same as social integration. The authors show that other population groups, when given a free choice, tend to prefer integrating with their own kind rather than with the commnity in general. The authors go on:

'Yet the philosophy of integration is so entrenched that writers on service policy simply assume that people with an intellectual disability are somehow different from other groups in society, such that integrated rather than segregated experience is necessarily of benefit to them….'

'They do not explain why such people should regard integration with the general community as being more desirable than integration with the community of people with an intellectual disability.'

Cummins and Lau make the point from Disabilities Victoria’s own research that shows that top of the list of aspirations of people with disability was not community integration but having an intimate friend. They ask:

'So what are the dread consequences of people with intellectual disability being encouraged to seek companionship, friendship and a primary sense of community from other people who have an intellectual disability? Where is the evidence that it is harmful to construct living environments for such people ... such as cluster housing?'

Dr Rhonda Galbally at the National Press Club in Canberra

At the National Press Club in Canberra, Dr Rhonda Galbally told it like it is! 'What does it mean to be an Australian with a disability in 2009? What is life like in the lucky country, in this land of the fair go? One answer we might expect would be, a citizen with the same rights as everyone else!' ... continue