Why this mum gave up her son to the care of the State
THE idea of giving your child over to the care of the state would appal most parents.
But this is difficult decision Garry and Mary Taylor had to make three years ago to ensure their son, Kenny, continued to receive care.
Kenny, now 20, has non-verbal cerebral palsy.
The Pacific Paradise family realised it was going to be a struggle to get help for Kenny once he turned 18 and became an adult in the eyes of the law.
But how could their son, who had been totally dependent on them since birth, be responsible for managing his own bank accounts?
How could their son, who could barely scribble his name, be expected to make a decision on the kind of care he should receive in case of an emergency?
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Garry and Mary have been through a long process of learning how "the system works" to ensure the best for their family.
It's a struggle, a physical and emotional struggle involving mountains of paper work, that continues today.
Mary tells their story.
"Ken was born in Canada at a small hospital, but after 12 hours he was seizing and had low blood sugar."
He transferred to another hospital in Ottawa and spent the first two weeks of his life in Intensive Care.
He was three before he was diagnosed with cerebral palsy.
The family moved to Australian in 2000 and found a range of support services, including a good paediatrician, a primary school, physiotherapist and social worker.
While Kenny's sister Cait, 15 months younger, made the milestones of children her age, Kenny didn't.
He couldn't talk, he was toilet trained at four and the family was struggling to cope.
Then, when Kenny was five, he was diagnosed with epilepsy and started having seizures and the trips to the doctor had to increase.
The Taylors had to juggle work, a family and a child with a disability.
As Kenny got older, the family spent more time seeing new doctors or specialists and battling with Centrelink to look for more help, while trying to spend time with the younger children.
Mary saw a psychologist to cope with the demands of "being a mother, wife, worker, advocate".
She also found emergency respite services in the phone book.
"We were coping just, sucking it up," she said.
When Kenny was 15 he was admitted to hospital for aspiration pneumonia, which involved a 10 day stay in ICU.
The family were discussing how they didn't want Kenny to be resuscitated, if the time came and they were thinking of how to plan a funeral when Child Safety became involved.
"As Ken was under 18 and we had 'abandoned him in hospital' Disability Services Queensland also became involved," Mary said.
Kenny bounced back but the family was "exhausted, financially, physically, spiritually".
"From being at the hospital, then Ken's needs changed. He had been inactive for so long that we just couldn't cope," Mary said.
"My sister-in-law made the call asking about relinquishing (Ken) and the language around 'not willing or able to care anymore'."
This sent Mary into "the depth of depression and anguish".
Kenny went to a respite house and stayed there for two to three months while the family recuperated.
But asking for help involved an inevitable paperwork trail and as Ken's 18th birthday loomed closer, there was the question of consent and informal guardian versus formal legal guardianship.
"Ken needed a separate bank account for his disability pension, his name couldn't be on it because he couldn't understand the terms and conditions," Mary explained.
"When he turned 18, the forms came in his name so I had to go to Centrelink to fill in forms to be his contact person for me to keep track of the correspondence for things like mobility allowance, pension updates and so on."
But the cheques that arrived from Medicare would be in Kenny's name, which meant the family couldn't cash them.
"There was also a cheque from housing when he was with Endeavour for rent reimbursement, we couldn't cash that in," Mary said.
"He can't write, but we get him to put a scribble on the different cards and passports because it is easier to do so and less time consuming than going about it the legal proper way."
The family also wanted to get an advanced health directive for Kenny, but they couldn't get it because Kenny couldn't understand to give the permission for it be legal.
They don't want Kenny to be resuscitated and incubated if he has a lengthy seizure.
"We want him to have quality of life, not quantity," Mary said.
"My husband and I agreed, if he dies at home, loved, then that is the best we can hope for."
Kenny is now living at Lifestyle Support in Maroochydore and is enjoying the kind of lifestyle his mum dreamed of for him.
He has been on a cruise and the carer's there regularly take him out.
They visit regularly and every time Kenny has a health concern, Mary rushes to be get there before the ambulance.
"I guess the main thing I want to point out is it is fine to do reviews and to update the system to find the people who abuse the system as the NDIS will cost," she said.
"But to ask the families of the high-care needs adults to do it again and again is frustrating.
"We get double the paperwork, one addressed to Ken and one addressed to me. Same stuff.
"I can't complain because Ken receives a continence aids payment scheme of approximately $400 a year to offset laundry and son.
"The Medical Aids Subsidy Scheme supplies nappies six monthly, a travel allowance of $90 a fortnight, which we are having to reapply for, then his disability pension and a housing allowance and post school option package.
"I have not idea how much this is, but we are so grateful for this."