Disabled people speak out over quality of support

Damon Hini and his mother, Caroline, say life at Segar Ave is a nightmare. Picture / Greg Bowker

Michael Shanahan, 49, scrunches a piece of paper with his one useful hand and makes a downward gesture. He has cerebral palsy and can't talk, but his answer is forceful when asked about what happened when he made complaints about the care he was getting while living in Focus 2000 houses.

For a moment we're perplexed. Michael gestures again - towards the rubbish bin. Everyone gets it: "Throw complaints away," translates his sister, Mary.

Michael's gestures and signs are startlingly communicative. Putting his hand into his pocket and pretending to take something out - "steal from you, steal things, once a week at least", translates Mary, who says Michael's unique sign language developed from when they were both kids.

Gradually a story emerges: "Showers - leave doors open so anyone could see ... treat you like a baby - given dinner at 5pm and put to bed at 6pm ... wouldn't give food when hungry ... constantly watching TV, weren't allowed to listen to music".

Mary says that when she pulled Michael out of Focus six years ago, chief executive Anne Murphy told her, "if it doesn't work out don't come knocking on my door".

Michael now lives with his sister and organises his own caregivers through independent supported-living provider Renaissance.

Asked if he's worried about any repercussions for talking to the Herald, Michael crosses his fingers and gives a defiant smile.

Aloha Puletama, 30, shrieks with delight and puts a hand in front of her face pretending to be shy when she's told her story will be in the Herald.

She too has cerebral palsy and can't speak. Living on her own in a Housing NZ house, Aloha has new caregivers - having requested assistance through the Support Independent Living service that Renaissance offers to change her home-based service provider, Pacifica Integrated Healthcare.

Why? Aloha writes three words on the pad in front of her: "Mad, hurt, talk."

Kathleen Kui, a community support worker, explains how she dropped in unannounced for a visit one afternoon to find Aloha put to bed at 3pm - apparently because the caregiver had other things to do that day.

On another occasion the caregiver sent her elderly mother to do her job. Aloha felt unsafe.

Then there was the time when she was left unchanged all day. She was also verbally abused for changing caregivers. Describing her new arrangement Aloha writes, "yes" and "like".

Damon Hini, 34, lives in a Focus house at Segar Ave, Pt Chevalier, which he shares with a flatmate. There are two other houses on the property - all purpose-built for people with disabilities. The environment looks modern, spacious and comfortable, so it comes as a bit of surprise that when asked about what it's like living there Damon says: "To tell you the truth it's a nightmare."

His daily concern is who is going to get him out of bed and into his wheelchair - a complicated manoeuvre that requires a hoist. Sometimes he has caregivers who are expert at the job. But others are woefully inexperienced, resulting in excessive pain and fear that he's going to be dropped on the floor.

Damon says that as soon as he gets caregivers trained in the process they move on and he has to start all over again. He says caregivers think he is always complaining. "They get sick of me telling them what to do."

Then there's the problem of driving in his wheelchair to the shops or the bank - something he likes to do on his own because it gives him independence. But because Damon has tipped out of his chair on several occasions, there is concern about his safety. More often than not, the houses don't have enough caregivers to spare anyone to accompany him.

Over the past six years the Health and Disability Commissioner has received 10 complaints against Focus. Only one went to a full investigation and was deemed "no breach". The other complaints were resolved, withdrawn or outside jurisdiction.

It's a similar situation with other big providers. Over the same period Spectrum Care had 15 complaints and Taikura Trust, which provides disability needs assessments, has had just 5 since 2003.

To put the scarcity further in context, the commissioner's office had only 15 formal disability complaints across the country last year. Human Rights Commission complaints against providers are similarly few and far between.

Deputy Health and Disability Commissioner Tania Thomas says the small number of complaints is not because there a few incidents of poor care. She believes the incidence of poor care is being under-reported - reflecting the extra difficulties disabled people have in communicating, and also because of fear of retribution if they complain.

Judi Strid, the commission's director of advocacy, agrees: "Advocates said that clients that rely on care are generally too scared to complain. They actually say it's better to have a poor service and an erratic service than no service at all."

Strid says the advocates observe a blame-the-victim perspective where the person with the disability is seen as difficult and that the problems are their fault.

The Herald observed something similar, with two disabled people we talked to asking not to be named for fear of recrimination.

Last year, the commission's advocacy service dealt with 11 disputes involving Focus, six for Spectrum Care and 36 for Taikura Trust.

The Focus disputes involved: unreliable care workers not turning up, arriving late, or not doing chores properly; mistreatment and abuse by caregivers; difficulties communicating with staff; possessions disappearing; poor care leading to bedsores and clients not receiving all allocated hours of care or services stopped without notice.

Damon Hini's mother, Caroline, has had many battles with Focus over her son's care. She is critical of the company's complaints process and routinely resorts to the Health and Disability commissioner's advocacy service to get satisfaction.

"I have locked horns with Anne Murphy many times. When I go into a meeting now I demand that she be present. I get one of the advocates from the commissioner's office to come, which backs her into a corner."

She says that over the years she and Damon have faced intimidation and threats. "It seems there is not a good communication process in place at all."