Special Investigation Bill Hoffman

A SUNSHINE Coast family has made the heartbreaking decision to give up their disabled 15-year-old son to the state after battling for years to gain the help they need to support him at home.

Garry and Mary Taylor, of Pacific Paradise, refused to take Kenny from Nambour Hospital, where he was admitted on February 22, following his medical discharge on March 16.

They will be the 44th family in Queensland to take that step already this financial year and the 10th on the Sunshine Coast.

In the past 18 months, 93 Queensland families battling with the physical, mental, financial and emotional cost of delivering what is often 24- hour-a-day care for child and adult offspring have made the same choice.

The Taylors cite physical, mental and financial exhaustion plus the desire to have certainty for their son’s future as reasons for their decision.

Kenny was initially attending Nambour Special School from hospital before returning there each afternoon.

“It kills me to say it, but we can’t take him home,” his mother said.

“I went to visit him in hospital. It was 7.30pm on a Friday. He was still in his school uniform, in a wet bed and asleep. I washed and changed him.

“He can’t talk but he has a gorgeous nature. His autism traits mean he will sit there watching DVDs for hours. That’s not good for him.

“We have to work and don’t want to jeopardise our jobs. We have no retirement plan, no savings. The debt keeps rising and we can’t work more to cover it.

“There is no recognition of the circumstance of families like ours.”

Kenny is now being housed at Brookes Street respite care centre in Nambour while the state determines his future.

He has cerebral palsy, is nonverbal, intellectually impaired, an uncontrolled epileptic wracked by seizures and is incontinent.

The Taylors said after he was hospitalised and they were advised he might die, they went from wondering how to pay for their son’s funeral while he lay in intensive care, to the realisation that theirs was a family past the edge of physical, mental and financial crisis.

They have supportive employers but have all but exhausted holiday and sick leave.

The Taylors love their son.

However they fear for his future with his formal schooling due to finish at the end of 2013.

Post school support packages are extremely limited and in no way reflect the level of care Kenny and others like him need.

In the care of the state his post school situation is certain. If he remains with the family, the Taylors’ ability to hang on to their home would be determined by the support package he received.

Since they began moves to relinquish him, the Taylors have received a letter from Disability Services Queensland telling them they were eligible for a Family Support package.

“But we won’t necessarily get what we need,” Mary said.

“There are no guarantees. That’s why we are doing this because we couldn’t cope if we didn’t get the respite and services we need.”

And the family says help comes at least two years too late anyway.

The Taylors’ plight mirrors that of parents and carers of disabled children across the Sunshine Coast. Parents the Sunshine Coast Daily spoke with told how they sometimes felt suicidal or simply walking away from lives that had become "nightmares".

They fear they face another 60 years of constant struggle while watching their children live an inferior quality of life.

They say their children are not accepted by the society in which they live nor their needs acknowledged and provided for by the state.

All complain about the unstreamlined, mishmash of funding that has to be hunted out and begged for.

Those with children still at school receive only minimum funding for desperately needed respite care that gives them a break from the constant demands of 24-hour a day care.

Parents of children who graduated from the Coast’s two special schools at the end of 2010 tell how they have received only extremely limited support since then.

Families say they were shocked by the lack of ongoing support.

The Taylors desperately love their son.

Garry, whose own father Ken, after whom Kenny is named, spent most of his early life as a ward of the state, despairs that he is now completing a circle.

But both he and Mary have had enough of the countless forms parents and carers of disabled are constantly asked to fill out and the never-ending search for funding, the source of which is not centralised but held by a range of agencies.

They are angry that their son’s condition is repeatedly re-assessed as if his mental state of a three-year-old or his Swiss cheese-like brain – as his mother describes it – may somehow miraculously heal.

Mrs Taylor, who works casually as a nurse, wrote to government agencies and politicians demanding her son’s limbo state be resolved quickly.

KEN TAYLOR

BORN: 23 October, 1995, Almont Ontario Canada

PARENTS: Gary from Australia met Mary a nurse in Saudi Arabia. Mary was a paediatric nurse, Gary an orthopaedic technician.

BIRTH: In Canada to be close to Mary’s family. Twelve hours after delivery airlifted to Eastern Ontario Children’s Hospital – seizures and not feeding. Machine assisted breathing. Mary stayed with Kenny for eight months in Canada. Gary returned to Saudi to work. Reunited there and stayed until 1999 when moved to Canada before shifting to Australia in 2000.

SYMPTOMS: Born with thumbs tucked in, a sign of brain damage. Never talked beyond blah, blah. never crawled, bounced on bum for two and a half years. Predictions from day one about his development have come true. Walked at 2.5 years – mum’s fond memory of him coming towards her laughing, arms up, proud of his achievement.

He has the mind of a three-year-old and functions by distraction

KENNY’S CONDITION

• Brain damage – cerebral palsy
• non-verbal
• epilepsy
• incontinent

SCHOOLING: Went to Maroochydore Special Education Development Centre then Pacific Paradise preschool for two years before shifting to Nambour Special School. Learned Makaton – a simple sign language at Maroochydore. Pacific Paradise preschool kids learned the basics and now in high school some still remember it and say hi to Kenny when they see him. "Kids are taught simple Japanese but if they all taught Makaton they could communicate at a distance without talking," Mary said.

LIFE: Everything rotates around Kenny. Gary can’t be booked for a job past 4pm because he needs to pick Kenny up from after school care. Gary works 32 hours a week for Sunshine Orthopaedic Services and four hours for Queensland Health each week. Mary works Tuesdays, Thursdays and Fridays at the Maroochydore Seven Day Medical Centre from 10am to 6.30pm. Vacation care for Kenny is 8am to 5pm.

BUDGET: After school care costs $5 a day. The family receives $6500 a year which is used for respite and after-school care. Those funds were exhausted four months before the end of the financial year.

RELINQUISHED

2009-10: 50 people with disabilities statewide had their full care relinquished.

UNDER 18: 15

18 to 25: 12

26 to 40: 8

41 and OVER: 15

JULY, 2010-APRIL l6, 2011: 43 were relinquished

UNDER 18: 14

18 to 25: 9

26 to 40: 6

41 and OVER: 14

(This information relates to the number of new individuals in 09/10 and 10/11 who were relinquished into full care that has subsequently been provided by specialist disability services.)

SUNSHINE COAST FIGURES

2009-10: Nine people relinquished

UNDER 18: None

18 to 25: Three

26 to 40: one

41 and OVER: five

JULY 1, 2010-April 6, 2011: Nine people relinquished

UNDER 18: One

18 to 25: Three

26 to 40: two

41 and OVER: three

RELINQUISHMENT: We’ve reached the bottom of well, we’ve nothing else to give; we can guarantee his future after us, we want to be in his life as guardians.

GARY: Knew this time would come at some stage, he needs to be in shared, supported accommodation by the time he’s 18.

MARY: Of the first 24 hours Kenny was out of ICU I was up for 22 of them and then spent 13 hours at the hospital thinking what else we would need at home to support him. Gary said it was time to give him up to care. I said no because we had fought so hard and for so long to keep him. Caitie’s affected, we share too much information with her. She’s 14 years old and wants her brother home.

Kenny gets frustrated by his inability to do things himself, he always needs help and needs to shout to get it. He can’t communicate with sign language because our collective vocabulary is not big. And he only has use of his left hand to sign.

Social isolation is the big thing, when the kids are over the cute three to six-year-old phase.

When they are older and drool continually and walk differently or are in a wheelchair you have to fight.

Talking to the politicians I wanted funding for carers to be at his bedside in the hospital. You know Peter Slipper’s taxi money would have gone far.

We had no acknowledgement from our local members to our letters.’’

RESPITE CARE

AVAILABILITY: Need to book one to two months in advance.

FUNDED: from care package.

COSTS: $500 a week, $5000 for two weeks

BROOK STREET

Mon to Frid (eight hours to 6pm): $221

Sat and Sun: $331 – public holidays $441

18hours overnight (3pm to 9am)

Mon-Frid: $379

Sat-Sun: $428 – public holiday $659

24 hours 3pm to 3pm

Mon-Frid: $493

Frid-Sat: $621

Sat-Sun: $712

Sun-Mon: $584

Public Holiday: $944

30-hour care -= 9am to 3pm following day

Mon-Frid: $626

Frid-Sat: $754

Sat-Sun: $918

Sun-Mon: $790

Public holiday: $1224

IN HOME SUPPORT

Mon-Frid: 6am to 6pm - $33 an hour

Weekend: $58 an hour

6pm to 10pm: $58 an hour

PANDANUS HOUSE

Overnight then school: $246

Two nights: $473

Frid to Sun: $907

24 hour weekend stay: $485

from http://www.sunshinecoastdaily.com.au/story/2011/04/16/a-couples-heartbr…