Please share something about yourself, your work, and what draws you to the Inclusion Network online community.
I am the mother of Michelle. Michelle is an adult with profound severe and multiple disabilities. She experienced living in institutional accommodation support of several kinds over 18 years and has been living back home with me for the past 20 years following the failure of her move from institutional to community based living.
That this failed for Michelle was more to do with inadequacies around appropriately trained workers rather than the closure of the institutions. Her significant health and medical conditions required workers with associated competencies.
We are staunch advocates for people with intellectual/profound severe and multiple disabilities to be supported to live in and participate in their chosen community and do not believe that such inclusion can be achieved successfully if one remains in institutional/congregate living arrangements.
I believe that the only way that individuals with intellectual disability can have self determination over the way in which they live thier lives is to have control over their disability related budget and if they wish, be supported to facilitate such an arrangement.
i have secured individual funding for Michelle and have self managed that funding for almost 20 years. This has enabled me to support Michelle to have a life in our community in a way which accommodates her health and medical challenges but still ensures that she is recognised as a participating member of our local area.
My passion is for inclusion to become natural for everyone and not something which has to be worked so hard for, to achieve.
To that end I have been instrumental in the establishment of an organisation the South Australian Council on Intellectual Disability Inc, which specifically supports people with intellectual disability and thier families. SACID pays particular attention to our mission statement which is "Working towards achieving a South Australian community in which people with intellectual disability are involved and accepted as equal participating members", albeit not wiihout it's detractors!!
Some have judged me to be that "woman, who has outdated, behind the times, old fashioned ideas about what is "choice" for the way in which people with intellectual disability are supported to live their lives". My view is that there is "choice" and there is "choice". One word which does not necesarily mean the same. If one is provided with the capacity to choose one rotten apple from 3 rotten apples, one still ends up with a rotten apple.
If one is given 3 apples to choose from, graded from rotten to mediocre/half rotten to a lovely red polished juicy apple, the red juicy one will get chosen every time.
Mind you for some, who have only ever had rotten or mediocre apples to choose from, they might not recognise that the red ones could be a much more satisfying choice.
Many of my detractors are still advocating for institutional/congregate living for their adult daughters and sons in the, (I believe), mistaken assumption that their family members are "safe" when living in such environments. Due to our experiences and as witnesses to the experience of others living in these arrangements, I very sincerely beg to differ.
I will continue to maintain my position as an advocate for "good lives" for people who are currently disadvantaged by their disability only due to the ongoing failure of society/governments to recognise that they must be adequately supported to live the same way as most other Australians.
How did you hear about this community?
From the National Council on Intellectual Disability (Australia).
Dell - Thanks for sharing your story. Wow what a journey! You are in the right place to come to this network. There are so many others with their own variation of this story - working (and unfortunately battling) for a good life for their loved ones. I hope that you can make some good connections here. You are also a gifted and compelling Writer. If you need a place to share or vent - we would love to hear more. Please let me know if there is anything that we can do to help. Again, thank you for being here! Becki