Access by Various artists

In parts one and two I covered New Zealand’s disability history up to the 1970s. From the 1970s the growing international disability rights movement developed what became known as the ‘social’ model of disability, whereby people have impairments but it is society’s attitudes that disable. For example, when a person who uses a wheelchair requires access to a public building the problem lies not with the person’s paralysis – the impairment – but poor building design that excludes the entry of some citizens.

Disability is thus the negative economic, political and social responses to impairment by a society built by and for non-impaired people and a disabled person is someone with an impairment disabled by society. To identify as a disabled person is therefore to adopt a highly politicised position which requires change to society’s values and structures.

In contrast the ‘individual’ or ‘medical’ model of disability sees impaired individuals as problematic or broken and requiring fixing. Their consequently lowered status can lead to institutionalisation or exclusion from participation in education, employment and other aspects of citizenship.

It is not surprising that the global disability rights movement developed out of the same 1960s ferment which encouraged women, youth, ethnic minorities, gay people and other marginalised groups to fight discrimination and reclaim civil and political rights. For disabled people, particularly those institutionalised and whose markers of identity such as personal clothing and possessions were often removed, it was not easy to organise into a strong advocacy force. But institutions also provided the sites for resistance.

A 1976 manifesto published by the London Union of the Physically Impaired Against Segregation (UPIAS) called for a change of attitude to disability policy.

Disability activism took slightly different paths in the US and the UK. In Britain disability studies developed within sociology departments and theorists adapted concepts such as power and oppression from Marxism. US disability activists tended to prefer an individualised anti-discrimination model in line with its constitution ‒ the 1990 Americans with Disabilities Act legislated for individual rights.

‘Nothing about us without us’ became the international slogan in the fight for nondisabling services and structures.

Disabled people and other disability lobbyists were also busy in New Zealand. Impetus was provided by the United Nations declaring 1981 the International Year of Disabled Persons. Funds raised by a Telethon (footage from NZOnscreen) went towards the establishment of Teletext, subsidised transport services and other services benefitting disabled people.

The formation of the pan disability organisation the Disabled Persons Assembly controlled by and for disabled people soon followed in 1983. Parents with disabled children established their advocacy group Parent to Parent the same year. People First, the consumer group for people with intellectual disability, was brought to NZ under the umbrella of the IHC in 1987 by JB Munro and Robert Martin (it later became independent).

A chapter on disability written by disability activist and later Human Rights Commissioner Robyn Hunt featured in the report of the Royal Commission on Social Policy in the late 1980s.

In a major advocacy victory Section 8 of the 1989 Education Act legislated for the right for all disabled children to attend their local school on the same terms as other children. Before then educational options were few.

However, despite the Royal Commission on Social Policy advocating more support for disabled people, incoming National Party Minister of Finance Ruth Richardson’s 1991 ‘Mother of all budgets’ chopped welfare. ACC provisions were also cut. Minister of Social Welfare, Jenny Shipley and Minister of Health, Simon Upton, promised new disability policy within financial constraints. Support for Independence for People with Disabilities – A New Deal was incorporated in the Health and Disability Services Act 1993. From 1994 most disability support services were transferred from Social Welfare to the Regional Health Authorities and funded by a capped and ring fenced budget from within Vote: Health. The landmark 1975 Disabled Persons’ Community Welfare Act was repealed. That act had acknowledged that the state accepted responsibility for the provision of many disability services and contracted CCS and IHC and other providers to provide the state’s services.

The market was now brought into service provision. A service provider tendered for the service via a contestable, detailed and competitive contracting process. Previously free services were now purchased by ‘clients’ from the state through Regional Health Authorities and service providers. Support was no longer a statutory right but dependent on available budgets, and disability became an individualised health problem. Access was through a new Needs Assessment and Service Coordination process, with strict eligibility criteria comprising only physical, intellectual or sensory (vision, hearing) impairment. The growing numbers diagnosed with Asperger’s Syndrome (autism without intellectual disability) were one group to miss out.

Two policy highlights of the era were the 1992 Mental Health Act which provided new processes including a complaints pathway, and the inclusion of disability in the 1993 Human Rights Act which made it illegal to discriminate on the basis of disability. DPA worked in coalition with gay rights groups to win this human rights struggle for both groups. Stories of abuse in institutions such as Lake Alice continued to filter into the media.

By the mid 1990s the neoliberal market model of disability support was under stress as the capped budget was not enough to provide required services, particularly at a time of high unemployment, market rents for state housing, and compulsory work testing for all beneficiaries. The killing of autistic teenager Casey Albury by her mother in 1997 occurred in this context. Following investigations a picture emerged of fragmented and inadequate services and lack of family support.

Meanwhile the success of the 1989 Education Act meant the state was supporting two systems: increasing numbers of disabled children at regular schools, as well as in numerous segregated environments. Considerable regional variation had also developed. The Government’s response was the controversial 1995 policy of Special Education 2000. Its aim was to promote mainstreaming of children with ‘special educational needs’ in regular schools and to close units and special schools. Unfortunately resourcing to support mainstreaming was highly inadequate. Legend has it that a Treasury official decided that only 1% of children would require targeted assistance, which was implemented through an Ongoing Reviewable Resourcing Scheme via a complex application and faceless verification system. There was widespread opposition to this policy from parents including a group who took the government to court. A review of Special Education 2000 was one of the Labour Party’s 1999 election policies.

1995 Tom Scott Cartoon featuring Minister of Education Lockwood Smith and three children with special needs. Ref: H-242-020 Turnbull Library

The neoliberalism of the 1990s was a difficult time for many disability activists although the rights movement continued to grow. They had instead been building relationships with opposition MPs, such as Labour’s Ruth Dyson. A window of policy opportunity opened with the election of the Labour-Alliance Government in November 1999 and a busy decade would follow. That’s in part four.

When our older son was provisionally diagnosed on the autism spectrum in 1995, there wasn't a lot to know. The diagnosis of Asperger Syndrome itself had only entered the DSM the year before. Most educators hadn't heard of it, the only information online seemed clinical and forbidding, and remarkably, the Special Education staffer who brought the news had walked out of the house without telling us a thing. (In retrospect, it's entirely likely that she didn't have anything to tell us.)

The lifeline came from another parent: the brilliant Barb Kirby, who had founded the O.A.S.I.S website (now OASIS @ MAAP) not long before, when she was faced with a similar lack of information around her own son's diagnosis. It was grounded in the experience of parents like us and it was worth any number of terse, clinical summaries.

Later, access to the experiences of adult autists became very important to me, and remains so. But we've learned a lot as parents and I try and offer support and advice to other autism parents starting out on the journey, via a Facebook group. It's from this tradition that Rowena Monds' Where is Autism? comes. In her own words, this children's book, including its end-notes is "based on the author's own experiences raising a child with autism".

The book is largely aimed at helping others – in particular, a child's carers, teachers and peers – to understand, but it will also connect some dots for new autism parents. I really like the way it doesn't restrict itself to deficits, as you can see in the facing pages 18 and 19. We talk about "special powers" in our house too:

Not everything here will be relevant to every child or every family. Monds' advice on visual thinking and visual aids doesn't particularly tally with our experience, and many autistic children won't have the friendship skills or verbal ability that Kahu displays in the story. But she notes – as anyone writing in this area should – that experiences are highly indvidualised. No two Aspies are the same.

It's not a long book and I think a few too many pages are taken up with the "where is autism?" set-up, but as an engaging, sensitive and localised (a Maori protagonist!) guide for children and adults, it should have a place in every New Zealand primary school library. (We still have school libraries, right?) It is going to help.

Where is Autism? can be ordered directly from Aries Publishing for $25.

Rowena Monds is also the founder of Autism Thinks, which provides information to assist families, professionals and individuals working and living with autism.

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It's worth noting that the Aspie who got that diagnosis all those years ago has also had a look at Where is Autism? and likes it.

Jimmy now has the skills to communicate in his own right of course, and this week Attitude published his short video about autism and Asperger's as part of its Hey There series in which young people talk about their experience with disability. It's really great and I could not be more proud of him.

Eighteen months ago I was on a benefit. Shock, horror! Yes, I was on a benefit. I’d been on what is now the Supported Living Payment (SLP) for about 5 years. The washing machine was on its last legs, I’d fixed the oven using spare parts from trademe (just the door which wouldn’t stay closed), every cent had to be spent with care, I couldn’t save and the financial future looked pretty hopeless really.

Why was I in this predicament? Because I’m a mum and one of my adult children is disabled. She needs full time support. This includes what we delicately refer to as “intimate” care, but her brain is perfectly fine and like me and probably you, she isn’t comfortable with people she doesn’t know (and most of those she does know) seeing her undressed, or touching and cleaning parts of her usually considered private. Apart from that, her combination of physical needs is unique, demanding multiple specialised skills, and failure to meet them properly would result in serious emotional and probably health consequences.

It was more than 6 years ago that her needs changed to this degree. She has a progressive disorder that relentlessly removes physical capability a bit at a time. Back then she was hospitalised for a serious unrelated illness and when she recovered from that she needed round-the-clock support. Although she’s bounced back somewhat, she still needs someone with her most of the time. She felt extremely anxious about relying on support workers who might not turn up and would need to be trained to meet her needs. When you don’t have much energy to meet the ordinary demands of living, expending energy training people over and over (because of churn) seriously reduces your quality of life. The thought that you might fall or endure some other misadventure because of a new person not knowing your needs or not listening to you is worrisome. You really don’t need more worries than you already have, believe me!

With the initial health crisis over, we talked about it and decided that the best thing for both of us was that I should be her caregiver. For me it means that I’m no longer worrying about her wellbeing while I’m at work. For her it means she has a reliable person who understands her needs to support her. It has enriched the mother/daughter relationship for us both. The means to achieving this nirvana of care was the Domestic Purposes Benefit (DPB) for caregivers. The main drawback is that benefit levels are so low and given the reason for being on the DPB/SLP, the only way out of the financial trap was death of one or the other of us (or winning lotto - which is tricky when you can’t afford to buy tickets).

Then along came Funded Family Care (FFC). The Atkinson case had been dragging through various courts for years and eventually the Human Rights Review Tribunal made a decision. Some time later the government changed the Health and Disability Act on Budget day with much fanfare about how family members providing significant care would be paid. When the actual legislative changes were made public however, it was clear that the promises were almost empty.

We read the FFC policy, realised we were eligible and after a lengthy and fraught process, I am now paid minimum wage for 40 hours of care per week, although the hours of support my daughter is assessed as needing are about three times that. We’re grateful because we are much better off. My pay through FFC is about twice what my income was on SLP, and the improved finances mean a better life for both of us. Last year we replaced a rotten ramp, changed carpet with underlay for carpet without underlay in the living room (sounds mad but firm surfaces are easier for people with weak arms to move a wheelchair on), bought specialised cushions to increase comfort and reduce the chance of pressure sores, and managed to get involved in community activities on a regular basis because we could now afford the travel costs to get there. One of the issues we had faced was social isolation, so this last is a biggie. Another issue, as you can tell from where the new money went, was disability needs not covered by The System.

Now, as I said,we are grateful for Funded Family Care. Our lives are better as a result of it BUT, it is a long way short of achieving what the Human Rights Review Tribunal decision clearly intended and we are one of the lucky few who can benefit from it.

The limitations are many. The worst is that FFC does not permit partners or spouses to be paid to care for their disabled 'other half', though ACC claimants can do this. Slightly less terrible but still offensive is the fact that family members can only be paid minimum wage but other carers coming in to do the same tasks can be paid much more. There’s also the conundrum that FFC is restricted to disabled people with high and complex needs, which by definition means that they have complex health issues, serious communication difficulties, serious learning or behavioural difficulties, or a combination of these. Yet they are required to accept the responsibility of being an employer. If you read the FFC policy you’ll see there are a lot of conditions including limits on other paid work.

Now FFC is under review. There’s a lot I would change. The existing scheme is a reluctant response to a Court decision, set up to keep the costs of the scheme as low as possible but ignoring cost savings in other areas and thumbing its nose at the judiciary and our civil rights. Supporting family members to care for people with high and complex needs can save years of residential care costs, and be better for all concerned, even the residential facilities, which do not cope well with this particular task - see this 2011 report and this news story.

Perhaps the biggest change I wish for is that our decision makers will put people, fairness and justice at the heart of their choices rather than narrow questionable costings.

Te Reo proverbs express this better than I can:

He taonga rongonui te aroha ki te tangata

Goodwill towards others is a precious treasure

and

I orea te tuatara ka patu ki waho

A problem is solved by continuing to find solutions.

The decision of the Human Rights Review Tribunal (HRRT) in the matter of claim between Atkinson (and others) and the Ministry of Health was released on the 8^th January 2010. You can download it here.

The HRRT hearing ran from the 3^rd September 2008 to the 9^th October 2008. The fifteen months, from the start of the hearing through to the final release of the Decision, was torture for those of us who, while not plaintiffs, were significantly affected by the outcome. My partner is a high tetraplegic, pre-ACC, and has chosen me as his carer. Paragraph 111 of the Decision most accurately describes our circumstances.

We speculated as to the reasons for the extraordinary length of deliberation. Did the Tribunal simply have no understanding of the Ministry of Health: Disability Support Services? Or was the Tribunal deliberately stalling their decision to give the Government time to respond to what we were fairly confident would be a finding of discrimination under the Human Rights Act?

It would appear that our first guess was correct. Coming from what we suspect was a position of almost complete ignorance, the Tribunal members were forced to go to a Disability 101 default setting.

The Decision is a plain English document that assumes the reader has no prior experience of the Ministry Of Health: Disability Support Services (MOH: DSS) system.

To this date, five years on, I have read no document that so clearly and cleanly describes the lived reality of accessing supports through MOH: DSS for those disabled adults with high, very high and complex care needs. Paragraphs 17 through to 40 of the Decision have been removed as they describe the types of care needed by the plaintiffs or the adult children of the plaintiffs. This care is personal and intimate, sometimes involving procedures usually performed by qualified medical personnel. There are challenging behaviours, manual transfers and special feeding protocols to avoid choking.

While gaining ‘independence’ is a worthy ideal, the reality for many MOH: DSS clientele is that true independence (i.e. able to live without the direct assistance of others) is simply not possible. For this group of disabled people, the care needed requires a high level of skill and expertise. The support required is often impossible to timetable to X number of hours per day, and is often needed at short notice. Failure to provide this high standard of care can seriously adversely affect the person with a disability...leading to injury, illness and sometimes death. The plaintiffs describe in paragraphs 42 and 43 of the Decision the inadequacies of care they had received from service providers.

The Tribunal grasped the inadequacies of the Needs Assessment and Service Coordination (NASC) process, and the examined in some depth the utterly nonsensical concept of “natural supports”, on which the NASC system is predicated.

The Tribunal was told that the NASC assessment covered

“... the following areas: living situation; current support networks (to include family members, neighbourhood and community/social groups, schools, church groups, Scouts, Girl Guides, service groups, sports and other clubs) ...” [para 53]

Paragraph 54 states:

“The individuals and organisations bracketed in the last paragraph above were described to us as “natural supports” for the family and this topic will be reviewed later.”

Let’s take a moment to look a little closer at “natural supports”.

The Ministry claimed in their submissions to the Tribunal that the care provided by the plaintiffs to their adult children with disabilities was “natural support” and should not be paid [6, 11,]. Now, we have already ascertained that the nature of some of the care required by these MOH: DSS clients is so personal and sensitive in nature that details have been permanently suppressed [17-40]. We should also remember that these cares often require skills and expertise beyond the capacity of most service providers to meet safely.

The Ministry of Health should ask itself, “Would it be appropriate to ask the Girl Guides to perform these tasks?” If the answer is “No”, then this type of care should not be described as “natural support”.

However, the Ministry of Health was clearly quite obstinate in its stance on this issue, and the Tribunal Decision devotes 33 paragraphs [116-149] to a discussion of “natural supports”, culminating in expressing a desire to see a test of “reasonableness” brought into the equation [45].

Not too much to ask, surely?

The Tribunal dares to actually state that MOH: DSS clients “...are entitled to funding assistance....for their care.” [165 c]

This is significant, as MOH: DSS documents rigorously avoid ANY use of the word “entitlement” when it comes to funding for Home and Community Support Services. In fact, at the High Court hearing in September 2010 on this decision, one of the Crown Lawyers said as part of her argument against the HRRT finding of discrimination, “These people have a sense of entitlement.”

The Tribunal heard much discussion on the history of the issue of paying family carers, dating back to “Hill v IHC NZ (Inc)” from 2001. The Hills complained to the then Complaints Review Tribunal that the IHC disallowing them to be employed as their son’s caregivers was a breach of the prohibition against family status discrimination. [65]

“The CRT found that in fact there was no explicit or implicit policy on behalf of government to do so and found that the policy was at the discretion of the IHC and was discriminatory.” [66]

Five years of ‘executive level discussions’ ensued, debating the issue of paying family carers of MOH: DSS clients. These discussions were halted in late 2005 when the Atkinson case began in earnest.

However, the Tribunal heard from the Ministry of Health that the ‘policy’ (of not paying family carers) “...is given legal effect through the exercise of power in s10 (2) New Zealand Public Health and Disability Act 2000...” [216] The Tribunal highlights in the next paragraph a quote from a Ministry Of Health revised draft paper from December 2005 on the issue of paying (or not paying) family carers.

“The policy of ineligibility of family members for contractual employment as caregivers of disabled people has never been set out in legislation, or been subject to formal executive approval by Cabinet. Because of this, it lacks a clear and transparent basis.” [217]

No wonder the Government rushed to amend the Public Health and Disability Act in May 2013.

This is the same document that is referred to in paragraphs 76 and 77, “Payments to and Support of Family Caregivers of Disabled People: ineligibility of family members for contractual employment as Caregivers: an assessment”, which stated that “the Ministry of Health should retain the right to make exceptions to this policy, and should develop a consistent basis for this.”

The Decision devotes five paragraphs [88-92] to the “Exceptions policy”. (This particular aspect demands some considerable discussion, so we may come back to it in another post.)

The Ministry of Health gave a list of reasons to support the non payment of family carers [13] and the Ministry of Social Development said they had a “number of difficult and complex ethical practical problems.” [68]

Most of these were addressed in paragraphs 93 -103 which looked at the ACC experience with paying family carers. ACC clients(in the National Serious Injury Group) have the inalienable right to have resident family members as their paid carers. These family carers often provide all the care needs of the client. ACC has a legal obligation to fund this care and they would be unable to meet their statutory obligations without utilising family members. The Tribunal took note of the fact that there was a joint MOH: DSS / ACC service specification for Home and Community Support Services (2008), and stated that,

“It would seem artificial to us to make a distinction as to payment options to family members for home care, purely on the basis of the cause of the disability” [103]

The Tribunal also discusses at length the influence that the New Zealand Disability Strategy should have had on the Ministry of Health’s formulation of policy surrounding Disability Support Services. [104-115] It would appear that the Tribunal was idling under the illusion that the Strategy actually had relevance and that government departments when citing the Strategy (as MOH: DSS are wont to), do so in good faith.

As impressed as I am with this Decision, and the work that clearly went into the case, there is one glaring omission from the plaintiffs’ list of government documents that supported their case.

In March 2008, the National Advisory Council on the Employment of Women (NACEW) released a report called “Financial support for family carers “. This document says that under certain circumstances (and the plaintiffs most definitely qualified);

“Paid roles for family carers would need to be agreed by the client and the family carer as part of a comprehensive client care plan. Any paid role taken on by family carers would be explicitly included in this plan as a replacement for a service that would otherwise be provided formally.”

And,

“As the family member would be contracted to undertake specific tasks, they would be paid the market rate for the tasks being performed. In other words, payment would equate to that received by workers delivering formal care services.”

This sentiment was recently echoed by the United Nations Monitoring Committee for the Convention on the Rights of Persons with Disabilities in its Concluding observations on the initial report of New Zealand in October 2014.

“The Committee recommends that the State Party reconsider this matter to ensure that all family members who are carers are paid on the same basis as other carers...”

Please.

You probably know that it's characteristic of people on the autism spectrum to have particular fields of interest and sometimes particularly focused abilities.

The dream scenario is that autistic people can be helped to turn these things into activities that benefit themselves and others, and perhaps even make a living doing something that they're good at, and that makes them happy. Yes, that's kind of what we all want, but with knobs on.

After Jimmy Wants a Job, the Attitude documentary about our son, James Rae Brown, screened last year, many people got in touch to say what a great young man Jim was and to wish him luck. The making of the doco was quite trying at times and the praise and recognition was due reward.

But  Kelly Rogers of the Rialto Group went further -- and offered Jim a job at the Bridgeway Cinema in Northcote Point.

Since then, Jim has been working a day a week at the Bridgeway, cleaning and restocking for minimum wage, and that's all good. But recently, Matt Turner, the Bridgeway's manager, proposed extending Jim's duties. Not just more cleaning and restocking -- but reviewing movies, for pay.

It had become apparent to Jim's workmates that he is an excellent source of pithy film reviews. He has probably seen that movie you're wondering about and he will give you a thoughtful 60-second account of it. So Matt proposed that he write reviews for the Bridgeway to use on its website and elsewhere. Jim and I discussed it and quickly decided he should make video reviews too -- after all, he was already doing that for his own purposes.

It's been a while in the making, but the Bridgeway's YouTube channel is live now, and you can see Jimmy's reviews, which are really good. Here, he tells you why he loved Interstellar and you probably will too:

Saint Vincent? Not so much ...

He did find Jimmy's Hall both profound and inspiring, but warns that it's not actually the feelgood flick presented in the trailer.

I think the strength of Jim's reviews is that he actually does review the movie and its constituent parts, and not just the media around it. They're clear and focused personal assessments, often with a humorous touch. We'll work on some technical elements over summer, but the content, presentation and editing are 100% Jim's turf.

It's been nice to be able to approach Christmas feeling this good and I'm grateful to Matt, Kelly and everyone else for recognising Jim's talent and giving him a creative job. In the meantime, I would note that if you're looking for a place to watch a movie this summer, the Bridgeway is an excellent establishment run by good people.