Friday, June 20, 2014

Stay or go? Country families' dilemma on children with disabilities

from Bush Telegraph:
Meet 12 year old Reggie Happ. He loves tenpin bowling and swimming and has two great mates who, like him, have Down Syndrome.
He's in year seven at high school in Bathurst, New South Wales, where a dedicated teaching assistant helps him stay in touch with the curriculum.
But it wasn't always like this. When he lived in the small town of Coonamble out west of Dubbo, he struggled to find a suitable friendship group.
And with professional services almost non-existent, Reggie's mum Vicki was his speech therapist, sitting with him for up to an hour a day teaching him to speak more clearly - a task they both found frustrating at times.
Reggie and Vicki are among 78 case studies in a new report on rural families caring for a child with a disability.
The report shows families have to weigh up a range of pros and cons in deciding whether to stay in a small country town or move to a larger centre with professional services such as speech therapy, occupational therapy and physio.
In Reggie's case, Vicki opted to move 400 kilometres to Bathurst, in the New South Wales central west, to give Reggie a better life.
'I literally closed my eyes and put my finger on a map and as long as I was closer to Sydney I didn't care. I knew one person in Bathurst and that was it!'
'I did a little bit of research after I found the spot.'
But the move came at a cost. Vicki had to leave behind her husband and 21 year old son and the family home in Coonamble to live her life 'as a single parent'.
Vicki and Reggie return to Coonamble every school holidays, but she admits the arrangement has strained her finances and her marriage.
Dr Angela Dew is lead author of the report Rural Carers of People with Disabilities: Making Choices to Move or to Stay that features Vicki as a case study.
She says there was no shortage of families wanting to tell their story.
Dr Dew says some families decide to stay put in a smaller town because they feel there's support and goodwill.
'We know that in rural communities there is a wealth of human resources.'
The report quotes the mother of a ten year old boy with severe physical disabilities who chose not to move:
'We knew this was the best place for him. Even though we’ve had to travel and fight for his services . . . he’s been in a little community that’s fully supportive.'
A father describes how his small rural community assisted with some of the expenses associated with raising his 10-year-old son:
'Even for our home modifications the town raised $20,000 to help us pay for that.'
Vicki sums up the hard decisions facing rural carers in deciding whether to stay living in a small community or to move to a larger centre as she did:
'I regret some things in my life but not that Reggie has a disability. That has made me the person I am and I’m a better person because of him.
'What I really regret is having to make decisions with the unreasonable choices left to me just like so many other families because of the lack of services and resources in our market driven society.
'I’ve had to make some painful and hard-to-live-with decisions but I suppose I had a choice.
'I chose not to limit my son’s potential and despite everything I’m glad I made the decision to move.'
(The report Rural Carers of People with Disabilities: Making Choices to Move or to Stay is published in Research and Practice in Intellectual and Developmental Disabilities, 2014)

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