A mother of a teenager with Down Syndrome says Disability Care will help her access the services she really needs.
“I’ve been nursing for 30 years and I’d hate to have to stop now.”
Midwife Debbie Lawson hopes the introduction of DisabilityCare will allow her 13-year-old daughter Olivia, who has Down Syndrome, to access services tailored to her individual needs.
“DisabilityCare is about putting power into hands of families, allowing them to spend money to buy the services they really need,” she says.
Debbie commutes 40 kilometres to work at Newcastle’s John Hunter Hospital, from her home at Lake Macquarie where DisabilityCare will be rolled out in 2014.
“We have been to seminars outlining the scheme and we’re quite excited about what it might mean for us,” she says. “We’re really hoping it will allow us to access services tailored to Olivia’s individual needs, rather than the ‘one size fits all’ approach currently on offer from service providers.”
Olivia started high school in a special education class this year and also attends an after-school care centre 40km away.
Debbie is struggling to get Olivia to and from school and the care centre while also meeting her work commitments.
“I’ve been nursing for 30 years and I’d hate to have to stop now because I can’t get Olivia to and from school.
“Hopefully DisabilityCare will give us the means to engage a carer to come to our home in the mornings, get Olivia ready, take her to school and bring her home at the end of the day.
“At present the limited government funding that is available, goes to service providers rather than direct to the families. Finding someone to provide the particular service you need, can be a very frustrating process.
“I approached a number of service providers who said they had already spent their allocated funding for that type of care, or their service didn’t provide that particular care, or they only provided care for children with autism or cerebral palsy, for example.
“One provider asked me to fill out a 10-page application form then said my request did not fit within their service guidelines.”
Debbie says the current system disadvantages families in rural and regional areas because many special needs services are concentrated in Sydney.
“DisabilityCare will be fairer and more equitable for all families regardless of where they live.”
She hopes DisabilityCare will allow her to fund weekly speech pathology for Olivia and dental work on her palate.
“Currently we only get a small number of speech pathology sessions under Medicare, which means big out of pocket expenses.
“There is no scope for dental work other than a long wait for special needs dentistry at a big Sydney hospital like Westmead. Under DisabilityCare I could pay the local dentist for Olivia’s treatment.”
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