IHC Hot Issues - March 2017

Hot Issues is an electronic newsletter produced independently for the IHC advocacy team. The newsletter covers education, current political developments, submissions, family concerns, disability topics and events.

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Deaths of those with ID often incorrectly recorded

Disability support system to be ‘transformed’

Government response to Education and Science Select committee inquiry disappoints

Education for All petition handover

Children’s Commissioner wants disability screening for all five year olds

Disabled people more likely to live in cold damp houses

Ashley Peacock gets international attention and another incarceration case revealed

Proposed new design and framework for Ministry of Health’s DIAS and NASC

Ministry of Health developing new Respite Strategy

Health and Disability Commissioner inquiry into those who cannot give informed consent

Access Alliance established

Government gives first ‘social bond’ to Australian provider


Deaths of those with ID often incorrectly recorded

IHC is calling for better health services and a national reporting framework for deaths of intellectually disabled people. Australian research has found that deaths of people with ID in Australia are often incorrectly recorded. The same problem is likely to exist in New Zealand. Researchers at the University of New South Wales found some people with Downs Syndrome who had died of pneumonia or heart failure would have Downs Syndrome written on their death certificate, though the condition did not directly cause their death. They also found that 38 per cent of deaths of people with ID were potentially preventable. Shockingly, the average age of death was 54 compared to 81 in the general population. Young and middle-aged people – those aged 20 to 44 – were four times more likely to die than people of that age group without ID. Preventative health conditions are often under-detected and treated.

Idea Service’s Dr Martyn Matthews did a small scale study of 54 New Zealanders who died in 2015 and found that ID was often incorrectly coded as the cause of death rather than the underlying condition such as respiratory conditions. IHC has long called for better access to health care for those with ID, including screening and regular health and dental checks.

Deaths of intellectually disabled people "misreported" Radio New Zealand


Disability support system to be ‘transformed’

Nicky Wagner, Minister for Disability Issues and Associate Health Minister, has announced a three month co-design process to begin a nationwide transformation of the disability support system. She says the “transformation” will build on lessons learnt from the Enabling Good Lives demonstrations in Waikato and Christchurch, as well as other evidence. The transformation will initially focus on those receiving support from Disability Support Services in the Mid-Central region (centred on Palmerston North). The Minister said: “The new system will incorporate a ‘social investment approach’ to improve outcomes for individuals and achieve savings over the long term. Additional funding has been allocated to run the co-design process, establish a change leadership team and collect baseline data.” The new system will include: access to independent facilitation to assist people to be aspirational and feel connected to their community; a strengths-based assessment process; a personal budget for disability support (made up of funding from multiple government agencies); flexibility and choice about how to use the personal budget, and a range of options to assist its management; capacity building opportunities for disabled people and their families; referrals to other agencies for additional services including learning and income support.

It is not known when or whether any of these demonstration projects will roll out across New Zealand.

Disability support system to be transformed Scoop


Government response to Education and Science Select committee inquiry disappoints

Two years ago Green MP Catherine Delahunty persuaded Parliament’s Education and Science Select Committee to establish an inquiry into the identification and support for students with the significant challenges of dyslexia, dyspraxia and autism spectrum disorders (ASD) in primary and secondary schools. Over 450 submissions were received from individuals, organisations and professionals. The Committee took over a year to consider all the issues and released its report in December. Its 46 recommendations included screening, school transitions, training and the implementation of the 2008 New Zealand Autism Spectrum Disorder Guideline recommendations. Opposition representatives submitted a minority report with several stronger recommendations.

The next step was the Government’s response to the recommendations. This report has now been published and all of the official recommendations have been accepted apart from a call for Special Educational Needs Coordinators (SENCOs) in most schools. The report claims that many of the recommendations are already part of ongoing work, but there is no time limit for implementation. Catherine Delahunty is disappointed, not only at the weak recommendations of the committee but also the government’s response to them: "National’s inadequate response to the Select Committee Inquiry into Learning Support will see children on the autism spectrum, with dyslexia, and dyspraxia, continue to miss out on an education,” she said. “They don’t want to properly implement or commit to any serious changes that were recommended.” High school students who travelled to Wellington to address the committee also feel let down that they were not listened to.

Thanks are due to Catherine Delahunty for her championing of education for disabled students in numerous ways over her nine years in Parliament even though she has been in opposition the whole time. She is retiring at the election.

Education and Science Committee calls for better support for students with special learning needs NZ Parliament (December report)

Government Response to Report of the Education and Science Select Committee, on its Inquiry into the identification and support for students with the significant challenges of dyslexia, dyspraxia and autism spectrum disorders in primary and secondary schools, presented to the House of Representatives in accordance with Standing Order 252 J.1 NZ Parliament (Government response to recommendations)

National response to Learning Inquiry an F for fail Community Scoop

Dyslexic kids not happy with Government response to inquiry Stuff


Education for All petition handover

The Education for All petition will be formerly handed over to Green MP Catherine Delahunty on Thursday 6 April 1pm at Parliament Grounds, Wellington, and she will deliver it to the Education and Science Select Committee. Before then there is still time to gather signatures, show solidarity and send a clear message to Government. Everyone is welcome. Here is the link to the petition https://www.change.org/p/minister-hekia-parata-education-for-all. An inclusive education summit  will be held in Wellington in May.


Children’s Commissioner wants disability screening for all five year olds

The Children’s Commissioner, Judge Andrew Becroft, wants disability screening for all five year olds. He says serious developmental issues in children are being missed in New Zealand's 'B4 School' checks. B4 School is a programme that assesses all four-year-olds to see if they have learning difficulties before starting primary school. But Judge Becroft says the number of young people coming through the youth justice system proves the programme is failing. He says they aren’t naughty teenagers but a large percentage have "things like traumatic brain injury, learning difficulties, dyslexia, foetal alcohol spectrum disorder (FASD), autism spectrum disorder, early stages of attention deficit behaviour disorder." With about 50,000 five year olds heading to school each year, better screening and intervention could save New Zealand millions of dollars in the long run, he says. "Whatever the cost is, it's going to be cheaper than the downstream costs for the education, health and criminal justice system.” Of course there is also a need for more professionals and better services in order to address any issues the checks identify and there are large gaps there.

Pre-school disability checks are failing - Children's Commissioner Newshub

Children's Commissioner calls for universal disability screening for kids at age five Stuff


Disabled people more likely than non-disabled to live in cold damp houses

New findings from the 2013 Disability Survey show that living in a house that is cold and damp is more common for disabled people than for non-disabled New Zealanders. This is because disabled people are more likely to live in poor quality rental accommodation than the rest of the population and people in rented homes have more trouble keeping their house warm than people who own their own home. Thirty-eight per cent of disabled people who rented said they have difficulty heating, and 24 per cent of disabled people renting reported both cold and damp compared with 15 per cent of non-disabled people. However, 20 per cent of those in owner occupied homes still had trouble keeping them warm. The survey also found one in six people with an impairment needed some modification to their homes – most commonly changes to their bathroom. It is shocking that so many disabled people are living in such poor conditions. Better housing must become an election issue.

Disabled people in rentals most likely to be cold at home Statistics New Zealand


Ashley Peacock gets international attention and another incarceration case revealed

Last year Hot Issues featured the unjust situation of Ashley Peacock, who has autism and learning disability and who has been locked up for years at a Porirua mental health unit. The Chief Ombudsman described Ashley’s living situation as "cruel, inhuman or degrading." His case has now been included in Amnesty International's latest annual global report on human rights abuses, which references the Ombudsman's report. This month Parliament’s Health Select Committee heard from Ashley’s parents following the petition last year for his release. The DHB has finally committed to progressing the plan to get Ashley into appropriate supported accommodation in the community. However, this is still likely to take several months.

Meanwhile another case of inappropriate imprisonment of a sensitive autistic man has been heard in the High Court. In 2006, disturbed by noise, the man smashed some van windows. Even though the crime carried a sentence of three months, he has been detained since then under the Intellectual Disability (Community Care and Rehabilitation) Act. His lawyer, Tony Ellis, claims that correct processes for his continued detention were not followed and that there was political interference to keep him locked up. The man and a relative applied through their lawyer for a writ of habeas corpus, which establishes the process for checking illegal imprisonment. A judicial review will be completed in July and meanwhile the man remains detained. How many more autistic people are locked up like this?

Human rights watchdog flags concerns over refugees and treatment of disabled man  NZ Herald

Ashley Peacock to be released after spending years in seclusion Radio New Zealand

Ashley Peacock to be released from mental health unit NZ Herald

Claims of political meddling in autistic window smasher's decade-long detention Stuff

Detained autistic man 'wanted to experience what an accident was like' Stuff


Proposed new design and framework for Ministry of Health’s DIAS and NASC

Sapere Research Group was contracted by the Ministry of Health to review and propose a new design framework for Disability Information Advisory Services (DIAS) and Needs Assessment Service Coordination (NASC) functions. The report is only advisory but is intended to help inform the work the Ministry is doing over the next few years to transform the disability support system. It identifies how the interface between disabled people and support services can be improved to better support people to have a good life.

The report contains a lot of detail but basically it recommends a paradigm and culture change for the Ministry of Health’s Disability Support Services, as well as adding an ongoing evaluation function with input from disabled people. Sapere suggest a national branding of disability in New Zealand and in particular across information and NASC agencies (i.e. access, front line) so that access is easily identifiable and raises the profile of disability in New Zealand.

Disability Information and Advisory Services and Needs Assessment and Service Coordination Review – A Proposed Design and Framework Ministry of Health


Ministry of Health developing new Respite Strategy

The Ministry of Health is developing a Respite Strategy to improve the way they purchase respite across the country. Respite aims to provide families or carers with a planned, temporary break from caring for a person with disability. Respite is also a way the disabled person can have a break from their normal routine. A temporary break can be for a few hours, a day, overnight or longer and may take place in or out of the family home. The trend is towards more flexible options for respite.

The Ministry of Health currently funds respite through: Carer Support – reimbursement of some of the costs of getting a break (paid on a half day or daily rate); in home support – one to one ‘buddy’ support (paid at an hourly rate) which may be provided in the home or the community; host-family respite – support is provided in another family’s home (usually for an overnight break); facility-based respite which allows families and disabled people to have a break while the disabled person is supported out of their home (usually overnight in a dedicated respite house or other facility); Individualised Funding Respite whereby disabled people or their families/whānau/aiga directly manage and purchase their allocated respite supports.

Out of scope for this project are: changes to Disability Support Services eligibility criteria; mental health, health of older people and ACC respite; equipment Modification (EMS) and the wider Environmental Support Services (ESS) and any changes to the way they are administered; Behaviour Support Services.

Consultation meetings are now being held around the country on the new Respite Strategy. Register by 31 March for these meeting or get more information at Respitestrategy@moh.govt.nz

  • 6 April, 2-5pm (providers) and 6-9pm (disabled people and families), Helen Smith Room Pataka, 17 Parumoa Street, Porirua
  • 10 April, 2-5pm (providers) and 6-9 pm (disabled people and families), Independent Living Service, 14 Erson Ave, Royal Oak, Auckland
  • 12 April, 2-5 pm (providers), 6-9 pm (disabled people and families), Barcelona Room, St John of God, 26 Nash Road, Halswell, Christchurch.

Respite Strategy 2016/17 Ministry of Health


HDC inquiry into those who cannot give informed consent

The Health and Disability Commissioner is undertaking a public consultation about health and disability research involving adult participants who are unable to provide informed consent to participate in the research. That includes some people with intellectual disability. Right 7(4) of the Code of Health and Disability Service Consumers’ Rights says that research with participants who cannot give informed consent cannot proceed unless the research is in the best interests of the participants. But some people think that these laws too restrictive. The Commissioner is seeking views from all interested people, including consumers, persons interested in the welfare of people unable to consent for themselves (such as family/whānau), providers and researchers. The consultation document and submission form are available on the website of the Health and Disability Commissioner. Submissions close on 30 April.

Meanwhile there have been reports that family members have found an unconsented notice of ‘Do Not Resuscitate’ on a patient’s hospital medical files.

Public consultation - health and disability research Health Research Council

Right 7(4) Consultation Health and Disability Commissioner

Hospitals slap do-not-resuscitate orders on patients without consent  Stuff


Access Alliance established

A newly created Access Alliance has been formed by some disability service providers and advocates. The lobby group is pushing for new laws to make buildings and services easier to use for disabled New Zealanders who make up 24 per cent of the population. The Alliance has proposed legislation which would enforce minimum standards of accessibility. The barriers can be physical, such as with buildings or in processes such as applications for jobs. Statistics New Zealand figures show that three-quarters of working-age disabled people who were unemployed would like to work. The Alliance has released a report by the New Zealand Institute of Economic Research, which claims that better support of disabled people would increase employment, cut welfare costs and increase tax revenue, for a total economic gain of $862million. The Alliance will meet with political parties and businesses in the lead up to the general election to discuss its recommendations.

Access Alliance Facebook page Facebook

Nearly $900m boost from proposed disability laws - advocates Radio New Zealand

'They find every excuse not to do it' - disability advocates Radio New Zealand


Government gives first ‘social bond’ to Australian provider

Social Bonds are a method whereby the Government contracts out social service provision to private providers and investors, but they only get paid (and get a return on their investment) when they have reached the targets specified in the contract. After much controversy and delay, New Zealand’s first social bond has been announced. Its aim is to get 1700 unemployed people with mental health conditions into work over five years. An Australian company called APM Workcare will deliver the service to eligible people living in the South Auckland region. However, opposition parties consider it a way to privatise part of the country’s mental health service and that it undermines the work local, underfunded mental health services are doing. There is also a concern about an overseas company’s lack of knowledge of local conditions and that a private company will target easier cases in order to meet the targets and make a profit. We will know the result in five years’ time.

First social bond to focus on mental health Beehive

Labour slams partial privatisation of mental health service Newstalk ZB