Parent tells it how it is across Australia!
The main fear caring parents have with any support service for their vulnerable family member with an intellectual or multiple disability is abuse, neglect and intimidation. Many parents, families, carers and friends are very fearful of questioning the service level and quality for this very reason. Estelle says ........
Estelle Shields is a very caring parent from New South Wales with her 33 year old son still living at home. Although she says, "not by choice but necessity", we know she wants the right home and the right care for her son. And she is fighting for this!
"We need to think closely about the definition of 'abuse'. My dictionary says that abuse is "hurting by treating wrongly". I see around me people with an intellectual disability placed in housing alone with minimum drop in support, stranded without access to a vehicle and reliant on the television for company. This is clearly abuse by neglect. I see people left with no funds at all after greedy service providers have taken most of the pension and provided no transport, necessitating the use of taxis. This is financial abuse. I see people who are starved of meaningful activities where service provision entails nothing more than providing food, clothing and shelter. This is abuse through boredom. These people are hurting by being treated wrongly. They are not physically or sexually abused but they are abused nonetheless.
There must be an acknowledgment that people with an intellectual disability are in the main highly social beings who thrive on and delight in the company of people like themselves. Most people with an intellectual disability do not enjoy a rewarding career or a family of their own. It therefore follows that the other cornerstone of our lives - the social network- assumes even greater importance in their lives than in the lives of their non-disabled peers. While the "experts" emphasize integration and inclusion in the general community, they disregard the right and need of PWD to make social networks within their own community.
How do they make these networks? Unlike the general community, people with an intellectual disability usually cannot drive a car, sometimes cannot operate a computer or telephone and may not be able to write. They need to be physically present in order to interact with their friends. This is why it is essential that workers facilitate their coming together to foster social links and build relationships. Where is the harm in schools, work places and homes that encourage the forging of long term friendships between people who have similar disabilities?
I have realized over many years that the barrier to the facilitation of these friendships has come from within the non-disabled community. It is easier for us to tuck away a person with a disability among a hundred non-disabled citizens than it is for us to confront a group of twenty or thirty obviously "different" PWD. The move towards inclusion may be nothing more than a convenience for us, a reflection of our own lack of acceptance and a rejection of who our people with an intellectual disability truly are: people like ourselves who make relationships with like people.
Kingsdene is the tip of the iceberg. We should be asking why weekly boarding schools and village style residential accommodation are not only permissible but encouraged in other developed countries? Why clusters such as the Camphill Communities are to be found around the world but not in our country? What model best supports the person with a disability while sustaining relationships? I recently attended a conference on sibling relationships where the family that was held up as a model of enduring inter-generational relationships had placed their PWD in a weekly boarding school from the age of ten.
My opinions are based on a longitudinal case study that I have been working on for nearly thirty-three years - my severely disabled son. It is daily observation of him and his needs that has led me to formulate my views. When I discuss my findings with other parents, I am invariably told that their son or daughter is just like my son. Sadly, we parents have no voice, no forum, no union and no advocacy that allows our opinions to be heard. Yet we must find a way to rebut the widely circulated, wellintentioned but misguided rhetoric of Ms Franks, Family Advocacy and their ilk. If we do not, our people may well end up in lonely inclusion, separate from their own community and isolated by their disability."
LISA Comment: "Well said, Estelle!" You are in the very good company of Dr Rhonda Galbally, who also told it how it is at the Canberra Press Club last year. So we feel very confident that parents, families, carers and friends of vulnerable people with limited capacity through intellectual and multiple disability across Australia will love you for telling it how it is.
The question is, "What to do?" We say it will be a long and hard road no matter what, and parents will need to live for ever! That said, we can lighten the load and commitment a little by getting together with a united voice and resources.
A "National Group" with resources through realistic membership fees and philanthropic funding sources to purchase professional legal, financial, administrate and media services, would be a force to be reckoned with.....See More
Tony & Heather Tregale
LIFESTYLE IN SUPPORTED ACCOMMODATION (LISA) INC.