(Transcript from World News Australia Radio)
One proposal by the advocates is a residential boarding model in which the children’s responsibilities are shared between parents at home and carers at boarding centres.
And they are concerned carers will not be adequately supported in the DisabilityCare scheme previously known as the NDIS, the National Disability Insurance Scheme.
(Click on audio tab above to hear full item)
A report by Anglicare highlights the pressure on parents who care for children with intellectual disabilities.
Susan King is Director of Advocacy and Research at Anglicare.
She says parents often feel that respite services are inadequate.
“There’s some significant impacts. Apart from anything else, it means that at least one parent can’t work so it impacts in terms of employment. It’s 24/7 care, a lot of these children don’t sleep so parents are constantly sleep deprived. The behaviours are often dificult to manage in public so the families seldom go out. If they do go out, they have to put in a lot of arrangements and planning to make that possible.”
Susan King suggests that Australia introduces a residential shared care model which she says has been successful in Britain.
This is similar to a boarding school system, where the children are looked after throughout the week but sent home on weekends and holidays.
Ms King says it can provide a balance of responsibility for the families and carers of the children with disabilities.
Mary Lou Carter is the parent of a child with an intellectual disability.
She agrees that shared care would provide immense benefits to families.
Ms Carter says caring for children with intellectual disabilities entirely in the home is an incredibly demanding task, especially when the children have siblings.
“Well when you have other children as well, it complicates it immensely. So you’re trying to tear yourself apart to meet the needs of all your children and yet you have this overwhelming responsibility that falls entirely to you and you know that your other children need nurturing as well.”
Ms Carter says young people with disabilities don’t have a say in development of new programs to care for them.
And she says often parents are so preoccupied providing care and support that their voices are not being heard either.
Ms Carter says the residential care model can also have positive benefits for children with disabilities, and not just their carers.
“My son lived in a shared care arrangement for seven years. And he learnt all those basic skills – learnt to share, learnt to live with other people, learnt there were others who were part of his life that needed to have attention as well; when he was living at home, he was the centre of attention all the time. And he learnt so many extraordinary skills that he would not otherwise have been able to learn because you don’t learn, let’s say for example, toilet training does not take place between 9am and 3pm. Toilet training is an ongoing thing that has to be extended across the setting, whether it’s at home, at school or in the residence.”
Alan Blackwood is from an organisation called Children with Disability Australia.
Mr Blackwood says he’s confident the new DisabilityCare scheme, formerly known as the NDIS, will provide the necessary support for carers of children with disabilities.
And he argues the proposed shared care arrangement cannot be regarded as the ultimate solution to the issue.
“There needs to be a full range of options to work out exactly what support will work and what won’t. Some families may choose that option, others may want support in the home. So there’s no one answer to this. The NDIS promises this type of support so I think the experience will hopefully be difference once the NDIS is in place.”