KEY POINTS:
When the Kimberley Centre in Levin closed in September 2006, it was the end of an era. Kimberley was the last of 13 large state-run institutions for people with intellectual and physical disabilities.
It was the final page in a process that began in the 1960s - moving disabled people out of institutions and into community-based support services.
While many would say we have come a long way since 1945 when Kimberley was known as the Levin Farm and Mental Deficiency Colony, others are questioning whether much has changed. That though the state institutions have gone, they have been replaced by a network of privately run mini-institutions providing a standard of care which in many cases is worse than what went before. That the process has decimated a highly skilled workforce in favour of lowly paid, poorly trained caregivers who bring with them the same prejudices against disabled people that held sway in the era of the institution.And that despite rhetoric about the rights of disabled people "to have an ordinary life", the stigma of disability and the discrimination of disabled people is as bad as ever.
These are just some of the themes emerging from the Social Services Committee inquiry into "the quality and care of service provision for disabled people and how they might be improved". The inquiry, which has had 147 submissions, came about following widespread reports of abuse and substandard care at Auckland's largest disability services provider Focus 2000 - reports that the Disabled Persons Assembly described as the tip of the iceberg.
In reference to Kimberley, a mother's submission to the inquiry challenges the closing of institutional services without providing adequate replacements. "Ideologies come and go, but these people with profound disabilities remain and become victims of experimentation of ideologies. They become invisible. Nobody listens to them, simply because they cannot articulate and are seen to be uncommunicative. But they are still people."
The mother, whose severely intellectually and physically disabled daughter lived at Kimberley from age 10 until 2005 when she died aged 41, talks about how the progressive withdrawal of services at the centre affected her daughter. How in the early years "with the very able physiotherapy department, the hydrotherapy pool and visits from the orthopaedic specialist" her daughter learned to walk. But how the hard-won ability was lost with the shutting of those services. In 1989 Kimberley ceased training psychopaedic nurses. As the mother points out, training of nurses and caregivers for those with profound intellectual and physical disabilities has been "ad hoc and piecemeal" ever since.
Against the prevailing dogma of "care and support in the community setting" the mother argues the closure of institutions has taken away the choice of having a safe inclusive environment - a sheltered community.
The mother's concerns are repeated in a variety of ways by other submissions. Parents talked with anguish about the plight of their children in community care: "**** was taken to the doctor after being punched by a male member of staff. Staff are not allowed to say he had been punched, only saying he is complaining of a sore stomach," says the parent of a 37-year-old in a Spectrum Care house.
"Hygiene was negligible. As a parent I was continually cleaning ***** to rectify neglect. Many times I uplifted him and took him home. Quality of diet was lamentable. Many meals did not contain meat or vegetables or fruit. The quality of caregivers was of a very low standard," says another of an IHC house.
The stories are similar to those the Herald heard when it investigated claims of abuse in Focus 2000 houses last year. Residents like Damon Hini and Michael Shanahan spoke out about the poor standard of care and how their complaints were ignored. Although Focus was largely cleared by Ministry of Health audits, the company carried out its own investigation. Largely through the work of advocate John Carbutt, it uncovered widespread abuse and failure to follow correct procedures in several houses, resulting in two senior staff being dismissed.
Other submissions talked about the nightmare of getting care and the complex bureaucratic processes people have to go through to be assessed and then funded. "My son has been bounced between no care (when he gets into trouble) and bad care where abuse, wrong diagnosis and wrong medications have caused him to suffer extreme and violent side effects. He is currently being kept in a constant state of sedation while funding agencies fight over who should pay for his care. This has been ongoing for two years with no solution in sight," says a frustrated mother.
The frustration is echoed by the Federation of Vocational Support Services: "Whether it's respite care for parents, special education, transition from school or elder care, there is always a rigid set of criteria to be met and invariably a reason why a person is ineligible and another government agency should be finding their support."
Disability services funding comes by a number of pathways in New Zealand. For those over 65 it is serviced through District Health Boards. For those who get their disability through accident, the funder is the Accident Compensation Corporation. For the rest the main funder is the Ministry of Health, with additional services provided by other government departments such as the Ministry of Social Development and Ministry of Education.
The Ministry of Health funds' gatekeepers are the NASCs - the national assessment services co-ordination organisations which are supposed to help disabled people through the choice of services provided by non-government organisations funded by the ministry. In 2006 the Ministry of Health spent $754.9 million on disability services looking after 32,730 people, the bulk of which (25,684) were in community care, meaning they were getting support in their homes.
But while the NASCs are supposed to co-ordinate services giving choice to disability users, the reality is different.
"The current models of support and choice are restricted to a pre-determined menu of contracted services that become and are life defining," says the IHC.
"Disabled people feel they are fitted into services rather than service providers being of service around the individual needs and aspirations."
Submissions talk also of the inequity of funding via different pathways. Those who go through ACC generally get more funding and better service. .
Many submissions said the fundamental problem with the NASCs are that they focus on what people cannot do. Rather than talking about aims and aspirations, people have to paint the most miserable picture - known in the sector as telling the sad story - to get support. As many point out, this flies in the face of the Government's disability strategy which emphasises disabled people having more control of their own lives.
Instead what disabled people get is what they have always had - paternalistic professionals and experts deciding what's best for them.
* Funding Flaws
A strong theme among submissions was that the biggest failing of the community based disability services system is that individualised funding has never been implemented. Under such a model, available to a lucky few in New Zealand, funds are provided directly to the individual who then "buys" what he or she needs.
Disability studies lecturer Dr Martin Sullivan says individualised funding was never implemented because it was administratively easier to bulk-fund agencies to provide "x" amount of services for "y" number of people.
The Disabled Persons Assembly says the Government is afraid that if it lets disabled people have more say in the support services they rely on, that quality will somehow be threatened or risk increased. The Assembly argues that is a view that says disabled people are not competent to say what will best meet their needs, reinforcing prejudices that disabled people are stupid, defective and worthless.
* Quality Of Care
The lack of good, properly trained caregivers is a recurring theme. The Muscular Dystrophy Association says the non-arrival of caregivers to people's homes to help them get going for the day happens on average twice a month for each of its members in Auckland.
In disability services it seems the customer is never right. "If you do not want your daughter to be supported by a male we will let you know when he is on and you can come and get your daughter," reports Standards Plus of a provider's response when a parents asked that their young autistic daughter be looked after by female staff.
The Heath and Disability Commission talks about how a swimming pool in a residential home was hardly ever used. "This pool was never used because it cost $15 per hour to participate in a 'pool swimming activity' and even if one of the residents could afford the activity fee she would be dependant on a staff member feeling disposed to supervise her in the pool. It was rare that staff felt like supervising a pool activity."
Similarly, the Southland DHB reports that untrained staff clearly have no idea what their job should involve. "People are not encouraged to help with the dishes, set the table or make themselves a cup of tea because staff who are in the union claim they are being paid to do this."
Turnover among poorly paid staff is also high. "Staff turnover has been high in my sister's residence where seven of the eight caregivers left the employ of NZCare in seven months," reports a relative of an ex-Kimberley resident.
* Audits And Advocacy
Another common thread to submissions is the poor level of accountability and the lack of effective independent advocacy services. Judi Strid, director of advocacy for the Health and Disability Commission says problems with the needs assessment process, co-ordination between providers, and the way services are provided are the main reasons people with disabilities seek help from an advocate.
"More frequently the complaints are about not getting any service, or inadequate and inappropriate service, provided by a passing parade of poorly skilled caregivers who have not been properly trained or prepared to carry out the tasks required of them," says Strid. She says consumers who are totally dependent on day-to-day services often put up with substandard services because the alternative is no care at all.
She says there is a need for monitoring systems that are more proactive and involve random spot checks.
* De-Institutionalisation
While many submissions talk favourably about the end of the era of sheltered protective institutions - places they say resulted in systemic abuse of disabled people - there are many concerns that today's community-based care is not much better. For many, institutionalised thinking - meaning no choice of daily activities, no choice of independent living arrangements and standardised approaches to a daily routine - is still alive and well. As the IHC put it, the reality of community care is "life on a benefit and the relative poverty attached to beneficiary status".
There is concern too that institutions are simply finding new disguises.
"Young disabled people are routinely 'placed' into aged care facilities every week due to a lack of service options," says a group of disability agency professionals in the Bay of Plenty.
"We are seeing large corporate provider organisations taking over the role of the institution with a growth over the last five years of larger and larger group homes, the establishment of sheltered villages and the very recent development of purpose-built institutions particularly for people with physical disabilities," says disability advocate Standards Plus.
Pat Hanley of the Social and Civic Policy Institute, sees the privatisation of disability services and the ministry's contracting model as the heart of the problem. "Contracting disempowers those intended to benefit because they are not party to the contract and have no effective means of affecting the terms of the contract." The Dunedin Community Care Trust speaks for many when its says: "Sometimes it feels that all de-institutionalisation has achieved is moving and reducing cost from government to the NGO sector. People and the effect it may have on them, has been a secondary consideration."
Meanwhile the Social Services Committee is in the process of writing its report. National spokesperson for disability issues Dr Paul Hutchison, who was instrumental in getting the inquiry to happen, says the disability sector from all over New Zealand has confirmed evidence of systemic abuse and poor care.
" I believe the committee has been deeply touched by many of the stories we have heard, some horrific and some inspirational. Many submitters have complained that little has progressed in the last seven years." He says there is a determination by all parties to write a forthright set of recommendations.
