When the visitors call
As the number of disabled people in residential care balloons in Victoria, the number of volunteers who ensure they are well cared for is falling dramatically. Michelle Griffin reports on a crisis where the most vulnerable have a lot to lose.
As the number of disabled people in residential care balloons in Victoria, the number of volunteers who ensure they are well cared for is falling dramatically. Michelle Griffin reports on a crisis where the most vulnerable have a lot to lose. THE KNOCK on the door can come at any time. On one recent Saturday night, community visitors Jenny Perry and Dawn Richardson arrived at a private home for people with an intellectual disability to discover that dinner was two-minute noodles."As we were writing that down, the proprietor came up and said, 'I've added chicken and ham now, you have to write that down,' " remembers Richardson, 67, a retiree who has been inspecting disability services for 10 years. "It was that loaf stuff, like Spam. It insulted the noodles more."When Victoria's first public advocate, Ben Bodna, was appointed25 years ago tomorrow to protect the rights of the state's most vulnerable people those living with intellectual disabilities, mental illnesses and/or dementia he established a volunteer taskforce to inspect the residences in which these people lived.Since the first group of community visitors was recruited in December 1987, they have exposed systemic abuse in institutions such as Kew Cottages, Aradale Psychiatric Hospital and Janefield, a Burwood training institute for the intellectually disabled.In January, the current Public Advocate, Colleen Pearce, revealed volunteers had lodged 86 reports of violence against people with cognitive impairments or mental illness over the past four years.In March, the dogged persistence of a community visitor prompted the Ombudsman to investigate a departmental cover-up of the assault of a disabled man by his carers in a Clayton facility.It was the community visitor who discovered the profoundly handicapped man, who cannot speak, had been dragged 16 metres down a hallway on his back and forced on to a bus. His severe carpet burns were not discovered or treated for 24 hours, and the community visitor was fobbed off by the department with reassurances that were ultimately proved false.But the community visitor scheme is in crisis. The number of people under guardianship orders, meant to be issued as a last resort, ballooned from 1088 in 2005 to 1574 in 2010, mainly due to the rising numbers of frail elderly unable to make decisions for themselves.Meanwhile, more than 1300 disabled adults are waiting for places in residential services as their parents grow old or die. The complexity of each case the office oversees is matched by the complexity of the paperwork involved. At a time when many organisations are struggling to recruit volunteers, the number of community volunteers is decreasing.In June 2009, there were 484 community visitors, compared with 335 in July 2010 and 312 today. Even though the remaining community visitors have increased their average number of annual visits since 2008 from 11 to 15, fewer institutions, private lodges, community residential units and psychiatric wards are being inspected overall."There are houses that haven't been visited for a very long time, which is very disappointing for us," says Pearce. "Community visitors are the safeguard in the system. That safeguard isn't available to people in the houses we don't visit."The Public Advocate may soon have powers to also investigate reported abuses of the disabled or the elderly in private homes, if changes to the 1986 Guardianship Act proposed by the Victorian Law Reform Commission are approved by the state government later this year. Pearce supports the changes but says she needs a bigger budget to deliver. "We cannot do any more without additional resources," she says.Privacy laws keep the work of community visitors anonymous: they cannot discuss what they discover with their relatives or friends and their reports are stripped of identifying details. This does free them up to scrutinise every element of a vulnerable person's wellbeing except their health records: the clothes they wear the upkeep of their rooms the quality of their food their freedom to make choices.On Monday, The Age accompanied Perry and Richardson to a private lodge they consider a model of what can be done for those on a disability pension. Supported residences sprang up as the big institutions closed down. In pension-level residences, residents pay up to 95 per cent of their income for food and shelter."You can tell who is there for the clients and who is there to make a profit the minute you walk in the door," says Perry, 67, who donates at least 20 hours a week co-ordinating the community visitor scheme in one of the metropolitan regions.This homely single-storey lodge "is the best one", says Richardson, which is why they asked the proprietor to allow The Age to attend an inspection. Visitors normally arrive unannounced and they visit in pairs so that they can corroborate each other's evidence. They are friendly but forensic."Visitors are at the pointy end of volunteering," says Pearce. "It's not the warm and fuzzy end. They work very hard protecting the rights of the people they visit. There is no doubt over the last decade the service system has got more complex and the client base has become more complex."While the 30-bed lodge seen by The Age is warm, clean and welcoming, it is telling that Perry and Richardson consider what it does to be exceptional rather than standard.Richardson admires a well-ordered laundry where sheets are washed daily without extra charge. Perry points out a bowl of fruit. Richardson notes that the small single-bed rooms are warm and tidy."You go into some places and the clothes are all over the floor. Or the residents are wearing dirty clothes," says Richardson. "And the proprietors say, 'It's their right to live like that.' ""This place is always neat and quiet," says Perry. "Some places there's always fighting."Richardson reminds Perry of the fight that broke out between two residents at another residence during their visit. "The staff didn't come out of the kitchen. We had to split it up."Although this is a showcase visit, Perry and Richardson bring out their clipboards and fill out in triplicate everything they see. Is the medicine cabinet locked? What's in the fridge? What activities are planned for today? They go to the office and inspect the care plans for the residents: have they been updated in the past six months? Are they stored somewhere that all the staff can find them? Richardson notices that the staff roster is out of date. She makes a note to follow it up later.Perry plans to talk to proprietors about the compensation their pensioner clients will get when the carbon tax is introduced. Will the proprietors claim all of that extra money for the bills? Are they entitled to do so? The $700 federal stimulus grant that arrived just before Christmas in 2009 was taken by some of the proprietors. "I don't know how many told us they couldn't get that money," says Perry.These two visitors have become keen critics of the Department of Human Services. While visitors always start by asking proprietors to fix problems, the women both speak of their frustration when the department dismisses their complaints.For example, a report about mouldy bread was rejected by the department, which accepted the proprietor's word that it wasn't mould, that it was poppy seed.Some regions have better quality pension-level facilities than others these visitors say this isn't a matter of financial resources but departmental oversight at regional level. Private businesses, they say, rise to the minimum standard expected by department inspectors."If the department says a complaint is not verified, it ends, there's nothing you can do," says Perry.Like the first public advocate, Pearce believes that volunteers give the community visitor scheme credibility. Visitors are paid in Queensland and New South Wales, but in Victoria they are compensated for only basic expenses.Victoria's community visitors donated 84,942 hours of their time last year, worth an estimated $3.6 million."The value of the community visitor program is that it is an ordinary person going into a closed environment where most of us would never venture," says Pearce. "People are more willing to open up and talk to community visitors. I strongly support the notion that . . . volunteers bring something very different to what professionals bring."What they bring, she says, is independence. "They have no vested interests. They report it as they see it. They quite often gets tips from staff in the services themselves. But when staff see things they don't think are right, they are disempowered. People know the community visitors will act."When community visitor board member Sophy Athan got a call from a hospital earlier this year, she arrived at the emergency department to discover an autistic man being kept in shackles to restrain him."This person was terrified," Athan says. "The staff didn't know how to communicate with someone with autism, so he was put in shackles for a number of hours. We were alerted by someone and we went in. We are not there all the time, we only go once a month."She fumes. "Oh my god, how can that be happening today? We apply too many restrictive practices too frequently and too quickly because it's a shorthand way of keeping services rolling effectively."PEARCE agrees. She says that being chained or locked up is one of the most significant issues still facing the disabled. It has been reported as occurring in mental health services, residences for the intellectually disabled and even in nursing homes.Indeed last year's annual report from the community visitors program reported the case of an elderly woman strapped to a chair 12 hours a day. "The family and a GP agreed to the woman being restrained in the chair on the basis that they thought she would fall," says Pearce. "Good practice would say there are many other ways rather than restraining a person in a chair every waking moment."Like many community visitors, Athan and her fellow board member Trish Guglielmo volunteered after a family illness gave them first-hand experience of what can go wrong. Guglielmo discovered how difficult life can be with a disability after a stroke left her mother wheelchair bound. "You realise the way people are spoken to and treated when they've got an apparatus like a wheelchair," she says.Athan was inspired by the disrespectful treatment her late husband received after he was diagnosed with Alzheimer's disease."I discovered the care or the lack of care or concern about people who haven't got the capacity to speak on their behalf," says Athan. "But now I feel that whatever happened to my husband, that experience has now translated into a positive one: it is not for nothing that we had to fight the system and challenge some assumptions and some treatments."Perry and Richardson, however, had no experience of the system when they volunteered as a way of doing something productive with their retirement years.As is clear from the way the residents come up to say hello, or to hug and sit with them, being an advocate has become personal."We develop close relationships with these people," says Perry, who has been visiting for five years. "They have no one else. It would be hard to walk away knowing you leave such vulnerable people."The public advocate and community visitorsJuly 8, 1986: Ben Bodna is appointed Victorias first public advocate, swearing to represent and protect people with disability when they are abused, assaulted, neglected or exploited by those who care for them.December 22, 1987: First community visitors appointed.June 1992: Aradale Mental Hospital closed down after community visitors expose abuses by staff.November 1994: Janefield Training Centre for the Intellectually Disabled closed down after several community visitor reports expose Dickensian conditions in the patients overcrowded dormitories.May 2001: After 12 successive damning reports of conditions at Kew Cottages aretabled in Parliament by the public advocate, premier Steve Bracks announces thatthe institution will be closed down. October 2008: Community visitors annual report reveals that 99 psychiatric patients have been indefinitely detained in hospital because there were not enough community-based facilities.January 2011: The Public Advocate reveals that volunteers have reported 86 cases of assault, including rape, suffered by the cognitively impaired and mentally ill.