Jo's Story: My Own Place | Planning A Home For Those With A Disability
© Danielle Robertson Consulting Pty Ltd t/as DR Care Solutions
When it comes to living arrangements for people with disabilities, the strong default position is to group people into shared accommodation.
But what sense of "home" is there when you live with people you do not know or care to live with, and are subject to set routines?
While the idea of allowing a person with a disability to create a genuine home of their own is often quickly dismissed, for many years advocacy groups like the Community Resource Unit and determined parents, like Sue Boyce, are making what some term “the impossible” possible.
Their unique ways of thinking are bringing people with disabilities the opportunity to choose their own home or lifestyle, and live ordinary and regular lives in the community. The focus is on the person, not the disability.
The two steps to independent living
Success in moving to independent living, appears to involve two logical steps.
- A lot of thinking and planning takes place with the person, long before the actual move.
- Once the move takes place the support needs to be sustainable; it needs to grow and evolve with the person.
Sue shares the story of her daughter, Joanna
Brisbane businesswoman and former Liberal Senator for Queensland, Sue Boyce took these steps to successfully move her youngest child, Joanna, into her own home.
Over the next two weeks, we'll share Sue's story on "Jo's Moving Out" in two parts - the thinking and planning around the move, and next week, the steps taken to sustain Jo's independent living.
Sue's leadership and determination to give Jo a full and independent life is inspiring and we sincerely thank her for sharing it. Here's Jo's story.
"My Own Place"
Part I: Thinking & Planning
by Guest Author, Sue Boyce
Joanna is a 36-year-old woman with Down syndrome. She’s a daughter, a sister and sister-in-law, and more interestingly, in her view, an aunt. Most exciting of all, she recently became a WIFE.
Jo loathes most change and moving out was never on her agenda. Plus she shared her time, every two weeks or so, between my house and her father’s. In retrospect, I realised that this might have been one of the reasons she didn’t feel the need to move out - we didn’t have time to become as 'irritating' as the parents of young adults are well-known to be.
I first seriously broached the topic of moving out when she was 25. One of the biggest problems I encountered was trying to explain the abstract. Jo wanted to know exactly which house with exactly which friends whilst I was talking about 'a' house and as-yet-unknown friends.
So moving out at 25 was an abject failure, but I kept working on her cooking and organising skills. And I was determined when she turned 30 that we were going to DO IT.
The motivator - care succession
My main motivation for wanting Jo to move out was the stories I had heard over the years of people with an intellectual disability left bereft of not only family, but community, when their aged parent died.
I still can’t forget the horror story of a Mackay woman who left her home to a service provider in her Will on the proviso that her 50+ plus daughter with Down syndrome would continue to live in the house with others. Within two years, the house had been sold and the daughter who had lived alone with her mother within a friendly community she knew very well was moved into a new group home in Townsville, a new city. Unsurprisingly she developed 'behaviour problems' - for which she was medicated! I know that, in terms of disability horror stories, this is mild, but it’s still a horror story to me.
Researching 'a good life'
I spent a lot of time in the 1990s looking at how the quality of Jo’s life could be protected long-term and explored what a 'good life' with as much independence as possible looked like. I was initially very motivated by the writings of a Canadian parent and academic, Al Etmanski, and his early book “A Good Life”. He set up an organisation called Plan Institute for anyone interested in his ideas. Some have the view that the NDIS funding has superseded the need for such organisations. I don’t agree.
Financials in planning 'a good life'
We were very lucky that my mother left enough money for a Trust for Jo to buy a house. And when Jo turned 30, I sought approval from Centrelink to set up a Special Disability Trust (SDT) for Jo. Special Disability Trusts are still one of the Department of Social Services' best-kept secrets but the information is on the website.
Briefly, an SDT can own a home and up to $681,750 (indexed with CPI) of assets before it affects the beneficiary’s eligibility for the pension, etc. Income from an SDT is taxed at the beneficiary’s tax rate (generally zero). There are also concessions for some donors to an SDT.
Jo already had an ordinary Trust which I looked at closing down. I eventually decided not to because the SDT can only be used for care and accommodation costs related to the disability, so it could pay for someone to accompany her on a holiday but not her personal costs, etc. Additionally, the beneficiary of an SDT cannot donate to their own SDT.
The hunt for a home
I had a long list of criteria for Jo’s home: not too far from my place; low maintenance; secure; a layout allowing a 'supervisor' to live there without being on top of Jo and her visitors; and easy access to bus and shops.
Jo was fairly reluctant but nevertheless we went house-hunting, so I could turn the abstract 'house' into something she could see. I think we drove real estate agents nuts taking huge amounts of time to 'play act' how she would do things if she lived in each house or unit. Jo became more accepting as she saw how it would play out.
The almost-perfect house became available near me - it's bigger than Jo needed but I thought that was the least-worst problem we could have. It’s solid concrete with very little garden, good security and a downstairs bedroom and bathroom for a 'housemate'.
I’d remembered advice from clinical psychologist, Dr Tony Attwood, from years earlier and all the appliances we bought were the same or similar to those she’d been used to using at my place. Jo chose the furniture, with lots of price and colour guidance.
In the meantime, I talked to dozens of parents and organisations that shared my values such as CRU, Bespoke, and CLA. Their support helped guide me with Jo's transition.
Jo and I spent six months practising living at the house one or two nights a week, but I still hadn’t solved the problem of the 'friend' who would occupy the second upstairs bedroom, when Jo solved it herself by telling me her long-term boyfriend Justin would like to move in with her.
So in February 2017, Jo (along with Justin) was finally installed full-time in her own home just down the road from me.
Jo's story continues next week and Sue share's with us how she made independent living for Jo sustainable.
If you need help planning a move to independent living for a person living with a disability, please feel free to call or email me, Danielle Robertson, for a no obligation, complimentary discussion.