Tuesday, July 13, 2010

Politicising the disabled

In a column in The Dominion Post in February 2008, I wrote that a law change requiring intellectually disabled workers to be paid the legal minimum wage was a triumph of human rights ideology over common sense. My column attracted a response from Ruth Dyson, then the Minister for Disability Issues, who told me in an email that in fact it was a triumph of fairness and common sense over ideology.

I remained unconvinced, and two years later decided to take a closer look at what had happened following the Labour-led government’s repeal of the Disabled Persons Employment Promotion (DPEP) Act in November 2007, which in turn led to the closure of 76 IHC sheltered workshops. What I learned, from speaking to parents of intellectually disabled persons and people working in the disability sector, confirmed my initial impressions. If anything, things were worse than I imagined.

In an article published in the latest issue of The Listener, I report that intellectually handicapped people who previously gained a sense of fulfilment and camaraderie from going to work each day in IHC sheltered workshops now spend much of their time in empty, purposeless non-activities euphemistically labelled “community participation”. This often consists of walks, going shopping or going to the pool – none of which is any substitute, parents say, for the work they used to do.

I spoke to parents of disabled adults all over New Zealand who felt betrayed and angry over the changes imposed in 2007. I use the word “betrayed” because the law change was enthusiastically supported by IHC – the very organisation those parents looked to for support. And although the government and IHC insisted there was widespread consultation beforehand, the parents I interviewed, many of them long-standing members of IHC, refute that. One said parents were shellshocked by the announcement that IHC’s sheltered workshops were to close. Another had heard only rumours before the changes were announced and said she suspected that the people consulted were a vocal group of the “higher-achieving” disabled who didn’t speak for those with intellectual disabilities.

One mother told me that her fit and active adult daughter, who had previously worked in an IHC team doing outdoor jobs that provided a constructive outlet for her energy, had suffered behavioural problems since IHC terminated her job and was now subject to a court order. A man who ran an intellectually disabled crew that did lawnmowing, firewood and garden work says his former crew members, deprived of the stimulation of daily work and thrown back into the company of people who were more seriously impaired, have regressed since IHC pulled the plug on their employment. There are hundreds of similar stories.

So what’s going on here? How come IHC, an organisation supposedly committed to the wellbeing of the intellectually disabled, was party to a law change that seems to have greatly disadvantaged many of the very people it purports to help? The answer, as I write in my Listener article, is that IHC has been captured by a rights-based ideology that politicised the treatment of the disabled. In the process, it has distanced itself (in fact alienated itself might be more accurate) from many parents with intellectually handicapped children – the very people who have traditionally been its most loyal and supportive members. The depth of feeling against the IHC that I encountered, both from parents and IHC caregivers (though the latter wouldn’t dare be identified for fear of repercussions), was striking. The impression I got was of an organisation out of touch with its grassroots. In fact a secondary thread in my article touches on the dangers that arise when former voluntary charities such as IHC morph into large, politicised bureaucracies that depend on the government for funding (as IHC does, receiving more than $200 million a year from the state).

As one parent pointed out to me, a conflict of interest occurs when the organisation charged with lobbying the government on behalf of the intellectually disabled is also beholden to the government for money. The pressure to fall into line with government policy – in fact, to effectively become a de facto arm of government – is obviously formidable.

Before I go any further, some background. The DPEP Act, passed in 1960, exempted sheltered workshops run by IHC and other providers of services for the disabled from having to pay the legal minimum wage. The act was founded on the assumption that the disabled were not productive enough to justify being paid a proper wage. Most parents supported the arrangement because it provided the intellectually disabled with productive daily activity in a safe, supportive environment. And though the sheltered workshop employees were generally paid only a token amount for their work, parents and caregivers insist that money is of little meaning to many intellectually disabled people. As Southland Disability Enterprises manager Ian Beker put it to me, self-esteem and comradeship are far more important.

In the face of a rising clamour for disabled people’s rights, however, none of that seemed to matter. Labour came to power in 1999 bent on freeing the disabled from the shackles of discrimination. Cheered on by disabled activists, it created an Office of Disability Issues and appointed Dyson as the first Minister.

As with many ideologically driven changes, the new approach involved a redefining of language. According to the Disability Strategy issued by the Labour government in 2001, “Disability is not something individuals have. What individuals have are impairments.” Disability, the strategy said, was what happened when other people created barriers that prevented the impaired from enjoying a full life. A similar ideology held sway at the Human Rights Commission, which proclaimed: “Disability is seen as a result of how society treats its citizens.”

Under this new philosophy, sheltered workshops were seen as exploiting a vulnerable minority. Green MP Sue Bradford went further, describing them in Parliament as a form of “systemic oppression” underpinned by a “paternalistic” charity model.

The Disability Strategy was followed by another document called Pathways to Inclusion, which outlined how the new philosophy would affect vocational services for the intellectually handicapped. In it, Dyson said people with disabilities had told the government they wanted to determine their own futures and be treated as valued members of society.

The IHC bureaucracy in Wellington embraced the new rights-based approach and lobbied in favour of the act’s repeal, as did trade unions and the Disabled Persons Assembly, an articulate lobby group which purports to represent all people with disabilities. IHC’s director of advocacy, Trish Grant, wrote: “Times have changed. We now understand that people with intellectual disabilities have the same needs and aspirations as anyone else.” The attitudes reflected in the DPEP Act, she wrote, were discriminatory and contravened the Human Rights Act.

Grant claimed that IHC had talked to thousands of intellectually disabled people and their families, “and they have told us consistently that they want opportunities for real work and they want real pay for the work they do.” Strangely, none of the parents I spoke to recalled being consulted. Some of them suspect the consultation was mainly with the Disabled Persons Assembly, which they say is dominated by well-educated, articulate people with physical and sensory rather than intellectual disabilities.

Under the new legislation, the automatic exemption from the minimum wage laws was wiped. In the interests of creating a “fully inclusive society”, disabled workers were to be granted the same rights as everyone else, including the right to earn the minimum wage, join unions and take annual holidays.

Everyone working in sheltered workshops was to be individually assessed. Those deemed capable of working in mainstream employment would be helped to find real jobs on the open market while those not capable of earning a minimum wage would be able to apply for an under-rate worker’s permit – effectively an exemption from the minimum wage law – and be paid according to their productivity.

One result of the change was that a new layer of bureaucracy was imposed on the disability sector in the form of Labour Department inspectors who must now individually assess each disabled worker every year. Providers of disability services say the increased administrative burden has added greatly to their costs.

But a much more significant consequence was that IHC, which operated 70 percent of the country’s sheltered workshops, decided they were no longer compatible with its vision of a “fully inclusive” society and closed them all down. Chief executive Ralph Jones said IHC’s primary role was to support people with intellectual disabilities, not run business enterprises for them. Instead, IHC would concentrate on supporting its service users into “mainstream” employment.

It wasn’t a question of IHC’s sheltered workshops no longer being economically viable, because other providers of similar services, having obtained the necessary exemptions from the minimum wage, continue to operate.

The insensitivity with which aspects of the change were handled by IHC is extraordinary. In one town, intellectually handicapped people apprehensive about what the new regime might mean were assured that it would help them get jobs that paid much better money. This went down very well, I was told, until they asked what sort of jobs they would be getting. The list included “restaurant worker”, “library worker” and “pool attendant” – occupations that a caregiver described as “spectacularly inappropriate”.

In Blenheim, parents were astonished when their intellectually handicapped children, who worked in an IHC-owned garden centre, were given a jargon-laden memo advising them that they would become “self advocates” running “micro enterprises” and would have to set up bank accounts and negotiate payments with clients. Some of those given the memo could neither read nor write. (The garden centre, incidentally, was subsequently bought by a hastily formed trust after IHC, to the indignation of the local community which had supported the business for 25 years, announced it was going to be closed and sold.)

IHC’s critics concede that many higher-achieving intellectually disabled people have benefited from the change. They have found mainstream jobs and are earning better money. But the repeal of the DPEP Act has not been so kind to the many former employees of IHC sheltered workshops who are incapable of “real” work and are now, since the closures, effectively idle. They have borne the cost of the IHC’s determination to pursue a rights-based philosophy.

Even for some who found “real” jobs, the outcomes have not always been ideal. Maori Party MP Hone Harawira told Parliament in 2007, when the transition to the new regime was already well advanced, that some intellectually disabled employees were teased and bullied in their workplaces. In Invercargill, parent Marion Miller estimated that 50 percent placed in jobs soon resigned because they couldn’t handle the pressure.

The idealistic theory behind the changes was that intellectually disabled workers would be scattered around the community. But as one mother said to me, intellectually disabled people greatly value the camaraderie that comes from being among their peers with caregivers who understand their needs. Only the most capable are comfortable working in a “normal” environment.

Moreover, as an experienced caregiver explained to me, many intellectually disabled people need emotional, physical or behavioural support and some take a daily cocktail of powerful medications. “If a dose is skipped, changed, lost, muddled or forgotten, the roll-on effects can be dangerous.” It was safer and much less hassle, the caregiver said, for an employer to hire a student or retiree for the same money.

Much of this, however, seems to have been overlooked by IHC in its headlong rush into a brave new world where everyone enjoys the same rights.

There are parallels here with the mental health reforms of the 1990s, when thousands of people suffering psychiatric illness were unceremoniously bundled out of institutions – often disregarding the concerns of their families – on the pretext that it was their right to live independently in the community. The result was that mental patients who had previously had the benefit of a secure environment in which they were fed, clothed, medicated and given a warm bed were let loose, effectively to fend for themselves. It was no coincidence that in the years following de-institutionalisation, the country was appalled by a spate of horrendous crimes perpetrated by severely mentally ill people who had previously been under proper supervision.

In the case of the changes affecting the intellectually disabled, the sad irony is that the people I wrote about in The Listener are now much less engaged in their communities than they were previously. This is the opposite of the effect intended.

Intellectually disabled people who mowed lawns and gathered firewood, for example, were out and about in their communities every day. An intellectually disabled woman who worked in an IHC business unit that provided ironing services in Taupo would help do the banking and got to know people along the route. When her parents walked down the street with her they were amazed at how many people greeted her by name. Now, in the brave new post DPEP regime, many of these people are ghetto-ised in day care facilities.

The irony doesn’t escape George Tyree, who ran an IHC outdoor work team in Levin. He refers to the government policy so eagerly embraced by IHC as “pathways to exclusion”. It’s impossible to escape the conclusion that for many intellectually disabled people, the “rights” conferred by the 2007 law change have come at the expense of their quality of life.

5 comments:

Lindsay Mitchell said...

Karl, You identify an important development in government capture of charities and churches. IHC now tell parents that they are accountable to government first because that's where their funding comes from (as David and Ronda Heather discovered). And having been a collector for the organisation for a number of years it shouldn't have been a surprise to me when they ceased their annual door-to-door appeal around 2006-7.

The 'capture' works for the charity/church while a leftist regime is in place but when an administration that wants to cut back the role of the state presides, where to?

This is what we are seeing with the formation of the 'shadow' welfare working group made up of politically left advocates, academics and mainstream churches. They will bring as much pressure to bear as they can on retaining the status quo (at least). Maybe enough to overturn the plans of a government elected by a majority.

Radar said...

Karl

An excellent commentary on the vocational services experiences of many families in New Zealand.
Just who is accountable to who is the $ 64000 question. Lindsay Mitchell is right that the government becomes the customer and not the disabled person as seems the case to many many parents.

Until there is accountability, transparency and consultation with the stakeholders these situations will continue to occur.

diversitynz said...

So, what's this blog about – the inappropriateness of an ideological and statutory change, or the incompetence of one of NZ's largest service providers to competently and progressively respond to that change? I think you are confusing the two and I'm not sure whether you are intentionally doing that in order to try and argue the point or not.

Your argument as it stands could be like saying we shouldn't allow women to vote because some choose not to; or we shouldn't allow same-sex marriages because some will end in divorce. Based on the democratic capitalistic system we are all beholden to, the repeal of the DPEP Act was consistent with the notion of a fair and just society.

There are many non-disabled people who do not value money as others but we don't restrict their access to bartering power (money) because of that.

IHC is, on the whole, an inefficient, ineffective monolith staffed by good people who work there for the right reasons. But it constantly makes poor decisions because it has reached the size where it cannot make good ones.

You say yourself:

"It wasn’t a question of IHC’s sheltered workshops no longer being economically viable, because other providers of similar services, having obtained the necessary exemptions from the minimum wage, continue to operate.

"The insensitivity with which aspects of the change were handled by IHC is extraordinary."

To marry that with the accusation of "a rising clamour for disabled people’s rights ... cheered on by disabled activists" borders on bigotry and is disrespectful of many generations of "well-educated, articulate people with physical and sensory rather than intellectual disabilities" (and non-disabled people) who have fought long and hard to increase fairness and justice to all disabled people, regardless of impairment.

I totally agree that sitting idle on a benefit, or spending "time in empty, purposeless non-activities euphemistically labelled 'community participation'” is demeaning and wasteful. But the issued is with the current labour market – it is too inflexible to ensure opportunity for everyone. Those with capacity or culture that doesn't match the mainstream labour pool require resources to survive, but there is no reason why they couldn't negotiate a civic contribution in return for state assistance that matches their capability. These would be "designed jobs", created to suit a unique set of attributes and skill-set. It's not like everything in society gets done, so there's plenty of scope to design some unique civic contributions.

The opportunity lost with law reform and ideological progress, such as deinstitutionalisation and the DPEP Act repeal, is a progressive response that add value to people's lives. This is seldom if ever achieved for disabled people (especially those with intellectual impairment) for lack of two things

1. The ability of concerned adults to allow people to take supported and managed risks, for fear of the consequences.

2. Investment in creative, innovative solutions that accommodate diversity.

In the absence of these things, the situation only gets worse. Going back won't make them better.

Karl du Fresne said...

Thanks for that thoughtful contribution. If I revisit the subject, as I intend to do, I'd be happy to seek your input.

Alexandra said...

I think it would be good to look at the issue with both a wide angle lens and a focus on people's individual perspective.

The problem I have with people focussing in on an 'ideology' is that this presupposes that ideology does not exist for people with a highly paternalistic view of what people with intellectual disability need.

I think in reporting this issue more research is needed to show the different sides of the debate, maybe even talk to people with intellectual disability who are self advocates?