People who are isolated by the nature of their disability are at risk of a loneliness. People with intellectual disability, whose needs and presence are rarely in the public eye, encounter additional challenges and limitations to daily life. Daniel Leighton asks, what will it take to end their deep and persistent disadvantage?
'Deep and persistent disadvantage' is the Macquarie Dictionary's definition of Australians with intellectual disability. It's not really, but it could be. Deep and Persistent Disadvantage in Australia is actually the name of a recent report by the Productivity Commission (those folk who usually write dry papers like an inquiry into safeguards required for the Imports of Processed Tomato Products, but they also occasionally deliver a winner - like the 2011 report into Disability Care and Support).
Australia has experienced strong economic growth for the past two decades, and we are fortunate to have avoided the recessions that have plagued nations around the globe since the GFC. This growth has delivered increased living standards and greater opportunities for most Australians, with one common yardstick - unemployment - more than halving over the past twenty years. Our unemployment rate is currently 5.7% and hasn't been above 6% since 2003. Yet, this doesn't translate into good news for all, and as the report articulates, some Australians are being left behind.
People who are isolated by the nature of their disability continue to remain at risk of a lonely life. Research shows that people with intellectual disability encounter additional challenges as a result of their impairments that other people do not face. For example, people with intellectual disability have difficulty learning and applying knowledge and in decision making; they can experience difficulty identifying and choosing options at key life transition points; they often have difficulty adjusting to changed circumstances and unfamiliar environments and therefore need high support during times of change.
The Australian Institute of Health and Welfare inform us that almost 60% of people with intellectual disability have severe communication limitations. This distinguishes intellectual disability from other major disability groups for which severe limitations are more concentrated in self-care and mobility.
People with intellectual disability are also highly likely to have severe limitations in all three core activities of daily living - self-care, mobility and communication. Given the extent of these limitations, it is also important that we consider the level of support that is needed in 'non-core activity' areas, especially making friendships, maintaining relationships and interacting with others if we are to support people to overcome their challenges.
The Deep and Persistent Disadvantage in Australia report tells us that:
* 80% of people with a disability have not had a visit from friends or family in the last 3 months.
* More than 50% of people with a disability have not had a phone call in the last 3 months.
* 18% of people with a disability have had no social contact with another human in the last 3 months.
And what about people with intellectual disability? We just don't know. There is not a single mention of intellectual disability in the report, despite people with intellectual disability being the largest group of people with a disability receiving government support because of their impairments. They remain hidden and ignored by our best researchers and surveys. For all of our surveys, statisticians and experts, we don't ask the right questions to get the information we need.
But this isn't about statistics. They are just another symptom. This is about human rights - the rights of Australians with an intellectual disability; of people without friends, or any human contact.
The disability rights movement in Australia has a rich history, with people representing a variety of different interests and disabilities coming together to achieve common goals over many decades. In doing so, the movement has learnt that to succeed means to represent the interests of people with differing abilities, and consequently, success has been greater for some groups than others. A quick test is to ask people about accommodations for people with a disability; the most common responses will be ramps or parking spaces. Yet neither of these were designed for people who are blind, nor people with intellectual disability. In fact, curb cuts came into existence to support a growing number of veterans returning from war with physical disability.
What and where are the equivalent curb cuts for people with intellectual disability? We don't know because we don't ask the questions to know what barriers we need to overcome!
For people with intellectual disability there is still a long way to go to be truly included in our community. People with intellectual disabilities have specific human rights goals. More than physical access, these Australians seek work opportunities, independent living (as opposed to institutionalisation) self-advocacy, and inclusive communities where they can contribute as equal partners, in order to directly address and reduce their persistent disadvantage.
What is lacking is that many disability-rights groups don't have representation of people with intellectual disabilities, so their interests are often overlooked or are represented by people without disabilities, such as caregivers or professionals.
How, then, do people with intellectual disabilities enter public discourse and lay claim to their civil rights? Their needs and presence are rarely in the public eye. Other human rights movements learned early on that change didn't occur without representation and inclusion from all parts of society. Why isn't this the case for people with intellectual disability?
Do people with intellectual disability belong to any of your social, religious, recreational or vocational networks? If not, would you be willing to actively recruit them? What will it take to end the deep and persistent disadvantage for people with intellectual disability?
Daniel Leighton is the CEO of Inclusion Melbourne, a community support organisation that has been assisting people with a disability for over sixty years.