Staff at Kimberley Centre are bracing themselves for the axe to fall on this country’s only major psychopaedic institution, which is currently home to nearly four hundred people with an intellectual handicap.

Within the next few weeks, Health Minister Annette King is expected to announce plans to close Kimberley Centre in accordance with working party recommendations, and already negotiations for a staff "exit support package" are underway.

The working party was set up by Ruth Dyson, while Minister of Disability Issues to evaluate the latest round of needs assessments for 379 residents and come up with a recommendation to present to the Health Funding Authority.

The recommendation forwarded to the HFA is for total deinstitutionalisation of the Kimberley Centre site.

Parents attending fourteen meetings held around the country to discuss the working party proposals were advised that 171 parents and guardians wanted their relatives and guardians to remain at Kimberley Centre, 106 favoured clustered housing at the Kimberley site and 72 wanted cluster housing in the Horowhenua area.

If Ms King endorses the working party recommendations, residents currently living at Kimberley Centre will be transferred to a range of community living options such as cluster housing, community residential homes and supported living arrangements.

During the past twenty years, Kimberley Centre has gained a reputation as the placement of last resort, providing short-term accommodation for people who could not be placed in other facilities due to special circumstances. These placements include a 39-year old Hamilton man who had been remanded in custody at Waikeria Prison after allegedly assaulting a police officer and a fourteen year old Northland youth whose hands and feet were bound with leather straps because his parents were unable to obtain specialised help to deal with his violent outbursts.

Kimberley Centre had discharged several hundred people during the 1980’s to allow staff to focus on more specialised treatment of the more profoundly retarded. By 1982, the criteria for admission to Kimberley Centre was restricted to those with severe behaviour or other psychological disorders requiring semi-secure accommodation, physical disabilities requiring constant nursing and medical services, severe sensory handicaps or epilepsy requiring stabilisation of medication.

According to an official report, Kimberley accommodated almost 50% more cases in the severely handicapped range than the national average and also accepted the psychiatrically disturbed, "unlike Mangere and Templeton."

Dr Alan Frazer, the medical superintendent at the time was notified that Lake Alice refused to accept patients with an IQ below 90 and therefore the courts were ordering Kimberley Centre to admit children with behaviour problems.

Before leaving New Zealand, former Government Statistician Len Cook singled out deinstitutionalisation as an example of policy being formed without sufficient research on their effect. Dr Cook cited social policy decisions being made with no statistical basis that they would work, including deinstitutionalising patients without any statistical basis to prove there were sufficient support structures in place in the community.

The working party has made their recommendation, "assuming specialist services will be in place to support all community living options".
 

For further information, contact Anne Hunt (ph/fax 06 363 7750)

A NZPA report reveals this week that it has cost taxpayers $355,000 in less than two years to keep a promiscuous, HIV-positive former Templeton patient isolated from the community.

Christopher Ian Truscott has absconded from care four times since he was ordered to be detained under Section 79 of the Health Act and on one occasion he was found back at the well-known gay haunt in central Hagley Park, admitting to police he had oral sex with two men.

He has said, in a letter to a newspaper, that he had escaped because he was getting sick and tired of being locked away, with no walks or rides. He also concedes that he should not have been released from Templeton in the mid-1980’s.

Such is the price taxpayers are forced to pay when health administrators and policy-makers authorise foolish decisions.

It is only a matter of time before Kimberly Centre – the last of this country’s major psychopaedic institutions - closes, releasing a further 400 people into the community.

And how much will it cost the taxpayer to rectify the mistakes caused by this latest exodus of our most vulnerable citizens?

An attractive young woman was discharged from Kimberley Centre earlier this year amidst a fanfare of publicity that she was finally getting a life and with assurances specialist support networks were in place.

The promised follow-up account of her community lifestyle has not happened.

Picked up wandering the streets naked, banned from the shopping centre, violent towards colleagues at work and offering to perform oral sex on strangers are allegations of such a serious nature they warrant investigation; particularly when the agency contracted to monitor her behaviour is identified in the Health Funding Authority’s official transition plan as a specialist behaviour support service which can be accessed by other people leaving Kimberley Centre.

Deinstitutionalisation, as other countries are discovering, is a policy based on ideology rather than reality.

And yet our politicians appear to be echoing the mistakes of other countries, and with less justification.

While institutions which were used as the basis of research in England were depressing places for staff and patients, New Zealand was setting up the first sheltered workshops, intensive therapy and innovative training programmes.; gaining international respect for their enterprises but ignored by New Zealanders committed to the dogma of deinstitutionalisation.

Community integration continues to be the prevailing politically-correct approach.

In an attempt to de-stigmatise mental illness, funding has been directed towards advertising campaigns and television documentaries revealing how some notable Kiwis have succeeded in spite of their mental illness.

But such comparisons can be cruel when there is no concession to more serious forms of mental illness.

It would be ridiculous, for example, to advise a person with a spinal fracture to throw away the wheelchair because a person with a broken toe can walk on crutches, and yet essentially the bones are of similar size.

The same naive generalisations also apply to intellectual disability.

It is not unusual for parents confidently rearing a child with an intellectual disability to frown upon those who are unable to cope with the stresses involved, without giving any credence to the individuality of each situation.

Contrast the capabilities of Robert Martin who featured on the most recent IHC advertising campaign with Samantha - who was abandoned by her parents as a toddler, due to her constant screaming. Diagnosed with Hallerman-Strief syndrome; at the age of four she was small in stature, unable to walk without support, had a limited vocabulary of two or three words, could barely feed herself and took very little interest in her surroundings. Both her vision and hearing appeared to be defective, although this was difficult to assess due to her marked mental retardation and eventually she was transferred to Kimberley Centre.

Kenneth was diagnosed at the age of 14 as having Prader-Willi syndrome, a genetic dysfunction affecting one of his chromosomes. According to a recent Dominion article, "He ran naked through city streets, threatening police who tried to take him home and more than once he was raped after going home with strangers. Kenneth, who had a history of lighting fires, died at the age of 31 in a fire he was believed to have lit himself."

Despite these medical case histories, Lester Mundell, as the Health Ministry’s chief adviser of disability is adamant that intellectual disability results in developmental delay and difficulties in learning.

"It is not", he stressed, "a medical condition."

This attitude exposes the fundamental flaw of deinstitutionalisation.

To condone community living, advocates of this policy cite cases of people thriving in a community setting; milking off funding from the institutions they label outdated and therefore, depriving the more profoundly handicapped people of the specialist support they are entitled to receive.

With the Privacy Act prohibiting information circulating without censorship, it is relatively easy to convince the general public that challenging behaviour is no more than "institutional neurosis", and that "releasing" people into the community environment will help "normalise" them.

So entrenched is this attitude that it is the practice of a significant community provider to remove any warning tags from the files of people discharged from institutions; leaving caregivers oblivious to any warning signals likely to place the person concerned or the neighbourhood at risk.

The dangers inherent in this practice were highlighted some years ago when a young man discharged from Kimberley Centre against the advice of senior staff, shortly afterwards set a fire in the basement of the Palmerston North Hospital. This incident was obviously hushed up to avoid embarrassing the person who had authorised his discharge.

Anyone who is prepared to listen to the discontent simmering within New Zealand homes will pick up examples of community neglect, such as the case of a person who contracted a kidney condition after sleeping on a cold water bed for six weeks over winter because the caregiver had not checked whether the bed was switched on; a man with cerebral palsy who was given an emergency enema on a kitchen table because his caregivers could not handle his bowel arrangements, a woman with a rare medical condition fed lying down because her caregivers have not been taught appropriate feeding techniques etc etc.

Then there are examples of people profiteering from the funding available to provide accommodation within a traditional neighbourhood, such as the former patient living in a shed alongside the family car or another who has no concept of traffic hazards and who regularly absconds from his current placement, situated close to a railway line.

Others roam the streets homeless, no purpose to their days.

These are not the type of stories those who stand to benefit from Kimberley’s closure would like to see bandied about in the media.

Nor are they the sort of stories which will help reduce the stigma of intellectual disability.

But they are the type of stories necessary to counter claims that these people merely think and learn a little slower than the rest of us.

IHC Chief Executive Jan Dowland says it is a scandal that Kimberley remains open when its residents could be leading more fulfilled lives in the community.

No one would dispute this platitude, but can the IHC or the Government guarantee that the quality of care will be retained once these people are absorbed into community cul-de-sacs and are dependent on the vigilance of their advocates to ensure funding is constant?

People with an intellectual disability are our most vulnerable citizens, and are entitled to receive protection from exploitation.

New Zealand, as a signatory to the United Nations Rights of the Mentally Retarded has an obligation to provide people with an intellectual handicap with "proper medical care and physical therapy and to such education, training, rehabilitation and guidance as will enable him to develop his ability and maximum potential."

Annette King has stated that specialist services to support the community living options will be developed.

According to Sue Gates a researcher associated with the IHC, these services already exist in the community. She says people have been using them for years. "The services are many and varied and include: residential homes, supported flatting, independent living, supported employment, vocational services, day-care services, tertiary education at polytechnics, family support services, respite care, shared care and specialist behaviour support services."

With Kimberley’s closure likely to be confirmed within the next few weeks, negotiations are underway to arrange an exit support package for staff. Faced with the prospect of impending redundancy, professional staff are already making arrangements to head overseas to find work where their experience will be valued, and some have already left.

These are registered psychopaedic nurses or training officers who have completed a three-year comprehensive course to gain a specialist qualification, and their expertise will not be replaced - both the National Training School and the Psychopaedic School of Nursing were phased out a decade ago.

Nevertheless Ms King says she is confident that all residents will continue to receive a similar standard of service, regardless of the final decision on the future arrangements for the Kimberley Centre.

Kimberley Centre has always been considered a refuge of the last resort, and as one former staff member commented, the majority of people unable to access day support services (60%) have such physical difficulties or behaviour problems, they require one-to-one attention to learn and to achieve.

During the early 1980’s, Dr Alan Frazer reported that Kimberley accommodated almost 50% more cases in the severely handicapped than the national average, and also took in the psychiatrically disturbed, unlike Templeton and Mangere.

At the time he had also received notification that Lake Alice would no longer accept patients with an IQ below 90 and the courts were therefore ordering the hospital to accept children with behaviour problems.

By 1982, the criteria for admission to Kimberley Centre was stringent:

• those with a behaviour disorder requiring assessment and planning
• those with severe behaviour disorder requiring semi-secure accommodation with appropriate training
• those with specific severe sensory handicaps needing specialised facilities
• those with untreatable epilepsy or for stabilisation of severe epilepsy
• those with physical disabilities requiring constant nursing and/or medical and paramedical services
• those with major psychiatric illness and other psychological disorders or severe mental subnormality

Another disturbing trend was reported to the Palmerston North Hospital Board in 1980. "Requests for admission to Kimberley continue to be made at a regular rate and the rather disquieting feature is that they concern individuals who are either already in care in IHC hostels or who are new names not known the hospital or IHC.

"This suggests that there could be quite a large number of potential admissions previously unknown to us. The most common is the mobile behaviour problem in the age group from ten to eighteen years, who has finally exhausted the patience and resources of community facilities.

"The other is the dependent care; intensive older , often multi-handicapped individuals referred because parents are ageing or the community or sometimes hospital facility providing the care want to free up the bed.

"The younger patients are not being presented like they used to be; local facilities attempting to deal with them, with parents feeling that they should keep them in their own homes. Often optimistic hopes are held for these children, often based on isolated skills rather than a balanced overall assessment. The early training in structured, stable and adequate disciplined environment which they need is therefore omitted by well-meaning parents and professionals; the result being a delay in request for admission until the behaviour becomes intolerable.

"For the hospital, this later stage of development is a real problem, as by this time, the candidate requires more staff resources and the outcome of training is less predictable.

"The other more dependent care-intensive group previously mentioned could also be swelled in numbers by the ageing geriatric-type patients no longer able to be cared for by community care facilities and barred from admission to local nursing home or other geriatric facilities.

"It has to be recognised", the report said, "that Kimberley is taking the problems nobody else wants."

These people make up the population which the Health Funding Authority plans to discharge into the community, with the confident expectation that community resources will cope with their specialist needs.

Contrary to public opinion, Kimberley’s closure is not a cost-cutting measure.

The transition plan which the Health Funding Authority presented to Wyatt Creech as Health Minister in 1999 estimated that it would cost an additional 2.5 million dollars per year to accommodate Kimberley’s residents in community accommodation plus a further 16.8 million dollars in transition costs.

Mr Creech rejected this plan, requesting further research before it met his standards.

However this issue is not about Kimberley’s survival alone.

Health Ministry figures published several years ago estimate there are approximately 11,000 people classified as having an intellectual disability.

Since 1929, children who required more intensive training to learn the skills necessary to live as independently as possible in the community, have had access to professional support in facilities such as Templeton, Kimberley, Mangere and Braemar.

Legislation was more enlightened in the 1920’s.

The Mental Defectives Act categorised people by their ability to guard against common dangers, and it was mandatory for children admitted to an institution to appear before an independent panel when they reached the age of 21. If deemed competent, they were discharged immediately.

Parents never lost guardianship of their child and could arrange a discharge at any time.

No intellectually handicapped child was locked out of sight, out of mind as the common misconception implies.

Fifty years ago, the Department of Education commissioned a report which documented the dilemma facing parents when the progress of their child slipped behind that of his peers and siblings. "Many mothers bear this heavy burden with wonderful patience and devotion, and will say after years that they are better people for having to bear it; a few are pushed under the protracted strain to the point of physical or nervous breakdown; nearly all are forced into a narrow and restricted pattern of life.

"We have been touched to hear intelligent parents who, with the greatest devotion, have done their utmost for a defective child at home, concede in the end it would have been better for both parents and child if he had been placed early in the care of a good institution."

These stresses were observed, even in the most supportive of households.

Dr Peter Anyon the oldest son of the founders of the IHCPA movement confesses that at one point he had threatened to certify his brother as his mother became too frail to cope with his care. Breaking Barriers, the official IHC history, describes their home life:

"As he was growing up, Keith received the full attention of his parents and was allowed considerable freedom of movement. Too much freedom, according to Peter, who remember spending hours riding his bike around the street nears their home looking for his younger brother."

Over-protective parents can sometimes inhibit development. When a woman who had devoted her life to caring for a Down’s syndrome child died last year, her husband was left to manage his son alone. As a consequence, the family home nearly went up in flames.

The general public became alerted to the demands of raising a child with an intellectual disability when Casey Albury was delivered dead to the Palmerston North police station. The following year, Nancy Helm killed her son and then ended her own life.

"Within the last two years", commented Stephanie du Fresne, a consultant psychiatrist, "Jim Helm is the second young person with an intellectual disability who, as far as we know, has neither wished nor deserved to die, and yet had died at the hands of a loving mother who despaired for their future."

Sue Younger, who directed a television programme on autism said that she is "disturbed at the number of parents who bemoaned the lack of specialist help they are receiving with their autistic children and at the number who felt the need to pay for extra help."

Australasia’s leading specialist in this field is Dr Tony Attwood who is now based in Brisbane, but who was originally recruited from England to work as chief psychologist at Kimberley Centre - attracted to New Zealand by the reputation of this institution.

As he informed parents, the staff at Kimberley were equal to the best he had known in England.

These are the staff now facing redundancy.

Speaking at a national conference in his dual role as medical superintendent of Mangere and executive member of the Auckland IHC branch some years ago, Dr Desmond Woods challenged the contention, unsupported by good New Zealand research, that all mentally handicapped grow in personality, self-esteem, independence and living skills when placed in the community. "One’s personal experience with individual cases would suggest the reverse is true."

"Surely", he urged his audience, "before a major exodus of the more severely retarded is set in train in the name of community integration and at great expense, we should have the results of good independent NZ research to guide us."

His advice was not heeded.

Information supplied by Karen Poutasi as the Director-General of Mental Health to condone deinstitutionalisation demonstrates that this policy is based on four research projects undertaken overseas, and a study on the closure of Kingseat (a psychiatric rather than psychopaedic institution). This final document includes a disclaimer that the case study findings "represent only the group of nine people who were able to verbally communicate and who were more independent than the other 45 people".

As Government statistician, Len Cook singled out deinstitutionalisation as an example of policy being formed without sufficient research on the impact.

He said there was no statistical basis to prove there were sufficient support structures in place in the community. By contrast, the decision to introduce GST was associated with some of the most extensive analytical studies seen in New Zealand’s policy.

It is ironic that one of this country’s leading financial experts should be driving the thrust to close down psychopaedic hospitals and hostels. In an interview following his retirement as chief executive of Telecom Dr Rod Deane quite candidly admits that he is passionate about moving the occupants of these institutions out into houses in the community.

It could be a case of double standards.

Currently patron of the IHC in partnership with his wife Gillian, he refers to the school in Levin where staff agreed to special his daughter on a one-to-one basis.

When Janine Albury-Thomson knocked on the same door, she was told it was closing.

The consequences were tragic.