Exhausted family members call for respite help

Families caring for New Zealand's most severely disabled working-age adults may soon get help for the first time to take an overnight break.

Family members who attended the country's first "carers' summit" at Te Papa in Wellington over Thursday and Friday told harrowing stories of the lack of support for families caring for disabled people since long-stay hospitals for the disabled were closed in the 1980s.

Birkenhead mother Jan Moss, who chairs the lobby group Carers New Zealand, said she was only able to get help to look after her severely intellectually disabled daughter Becky by leaving her at Starship Hospital at the age of 12 in 1996.

"We had tried all the service providers to get the help we needed.

"I had been very ill. I was totally burnt out. Her paediatrician recognised that, and arranged for her to be admitted to Starship and suggested I should stay away until we had the level of care we needed."

It worked. The Health Ministry has rented a house for Becky, now 21, to live in for five nights a fortnight so her mother can rest.

But two mothers of disabled young people, Gillian Wright and Heather Grace, said there was nowhere in Auckland with the means to look after their youngsters.

Mrs Wight's older son Andrew is still in nappies at 16 and cannot feed himself. Her second son Jamie, 13, also has epilepsy and suffers from intellectual disabilities.

"I need respite so I can be in my house and have a rest," she said.

Mrs Grace's son Brendon, 22, has cerebral palsy, epilepsy, poor vision and cannot swallow his food. Mrs Grace said: "The hardest thing for us is we have nowhere for our young people to go if we are sick.

"There are no emergency bed placements unless you put them in a rest home with the elderly.

"We would like a holiday like other people. To do that, our disabled person has to be in good care."

They said that between five and 10 respite houses with trained staff would be needed to support the number of parents with severely disabled children in the Auckland region.

Mrs Moss said the families with children now in their early 20s had the thin end of the wedge, as long-stay hospitals were closed around the time their children were born.

"I see families burning out now, all younger than us," she said.

"We want to continue to care for our kids, but we need good in-home support and out-of-home respite care so we can do that."

The ministry's director of disability services, Geraldine Woods, said respite care in Auckland was at the top of her priority list.

"We acknowledge there is a respite problem in Auckland. We have been trying to work that through in the next Budget.

Mrs Wright said the ministry calculated that it would cost $180-$200 a night to keep a disabled person with complex needs in a respite facility.