Hot Issues June 2016

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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New Zealander Robert Martin elected to United Nations Committee

Two years ago New Zealand’s Robert Martin was nominated for membership of the United Nations Committee on the Rights of Persons with Disabilities. This month he was been elected as the first person with learning/intellectual disability to serve on such a committee. His term runs for three years. The Committee, which monitors how countries implement the United Nations Convention on the Rights of Persons with Disabilities (CRPD), is made up of 18 disability experts from around the world. New Zealand ratified the Convention in 2008. The election took place during the June Conference of States Parties to the CRPD, an annual meeting for representatives from governments and civil society from countries which are signatories to the CRPD.

Robert is no stranger to the United Nations. He first addressed that organisation during the drafting of the CRPD over a decade ago as a representative of the global organisation, Inclusion International. Robert contributed to the drafting of the Convention and attended its signing as part of the government delegation. This time Robert was the New Zealand government’s nominee for our region supported by the then was Minister for Disability Issues, the Hon. Tariana Turia and the Disability Rights Commissioner, Paul Gibson.

Robert will be a particularly valuable member of the CRPD committee as he is very familiar with the discrimination and powerlessness many disabled people experience. His 2014 biography Becoming a Person by John McRae (which was recently translated into Japanese) tells of his often abusive upbringing in institutions and foster homes. He is also a founding member People First in NZ and self advocacy advisor with IHC for many years. He is remembered for once leading a strike for better working conditions, against the Society for the Intellectually Handicapped (later the IHC). IHC head JB Munro and Robert became colleagues and travelled together international and locally promoting the ideas of self-advocacy. Robert also contributed to sessions of the Conference of States Parties in recent weeks. Their current theme is implementing the 2030 development agenda for all persons with disabilities which is ‘leaving no one behind’. The sub-themes are: eliminating poverty and inequality for all persons with disabilities; promoting the rights of persons with mental and intellectual disabilities; enhancing accessibility to information and technology and inclusive development; and celebrating the 10th anniversary of the adoption of the CRPD.

Cindy Johns of People First, Disability Rights Commissioner, Paul Gibson and the Minister for Disability Issues, Nicky Wagner were with Robert in New York for his election. Attitude TV recorded the event. Congratulations, Robert. Hopefully this election will lead the way for many more people to follow.

CRPD Conference of State Parties Human Rights Commission

Robert Martin: the advocate without limits Public Address


A life for Ashley

Robert Martin once said, ‘No more institutions, we have the right to live in the community like everyone else’. But we still have institutionalisation including unacceptably high rates of seclusion of disabled people and one of them is 38 year old autistic man Ashley Peacock. He is locked up for much of the day by himself at Capital Coast DHB’s Tawhirimatea unit on the site of the old Porirua Hospital. We reported on Ashley’s situation in the February issue of Hot Issues.

Since then a group of Ashley’s supporters, including IHC Advocacy, have been trying to get some justice for Ashley and his parents. Kirsty Johnston from the NZ Herald who has a long interest in disability issues and won a media award two years ago for exposing disability abuse, investigated Ashley’s situation and wrote a series articles in the NZ Herald from the 7th June.

The story was also picked up by other media and within hours the Minister of Health was asked for a response, and there were several questions in Parliament. Other situations of disabled people being locked up were revealed. At the end of June Ashley is still in Tawhirimatea but there is a lot of official discussion and action going on behind the scenes.  The office of the Ombudsman is monitoring Ashley’s situation closely. Ashley’s situation has become part of a call by Green MP Kevin Hague for an investigation into mental health. Other stories have been revealed as a result of Kirsty Johnston’s investigation including an autistic man living in poor conditions in Waikato.

The Facebook page ‘A Life for Ashley’ has been set up to report progress.

A Life for Ashley Facebook

 Why do we still lock up disabled people in seclusion? Ashley’s case  Hot Issues February 2016

Autistic man locked in isolation for five years: ‘He’s had everything stripped from him.’ (1st article, New Zealand Herald

Fighting seclusion with collective activism Public Address

Man kept like ‘a caged animal’ NZ Herald


Changes to out of home placement for disabled children

Last year IHC Advocacy made submissions to the ‘Disabled Children: Voluntary Out-of-home Placement Review’. The Review was set up to consider what changes could be made to legislation, policy and practices to achieve better outcomes for disabled children who are (or are likely to be) voluntarily placed in out-of-home care under sections 141 and 142 of the Children, Young Persons, and Their Families Act 1989.

IHC was concerned about the discrimination that occurs in the application of sections 141 and 142 of the Act and wanted those sections repealed. Disabled children enter into out of home care with different legal and review arrangements than their non-disabled peers with subsequent poorer outcomes in relation to their quality of life in the community and the maintenance of family relationships. The submission also asked for better early and sustained support for families with disabled children.

The Donald Beasley Institute was contracted by the reviewers to carry out research with young people who had exited from voluntary out‑of‑home placements. Their report and the review are now available on the Disabled Children Project page on the Ministry of Social Development website.

Many of the concerns raised by submitters, including IHC, have however, been addressed in the recommendations of the Expert Panel for Modernising Child, Youth and Family in its final report ‘Investing in New Zealand’s Children and their Families,’ released on 7 April 2016. The Expert Panel’s report acknowledges the unique vulnerability and needs of children with disabilities and their families, and recommends substantial changes. The Government has endorsed a number of the Expert Panel’s recommendations that will affect disabled children in care, including repealing sections 141 and 142 of the CYPF Act and establishing a new support pathway for families caring for disabled children. The Government has agreed to extend the current provision in the Act around upholding children’s rights to be involved in decision-making. This includes making it a requirement to take active steps to engage children and young people who experience barriers to participation related to disability, language and age.

Major reforms of state care have been announced with Government overhaul of Child, Youth and Family. By March 2017, a new operating model will be established for children in care, which will act as a single point of accountability so that one agency is responsible for the long-term well-being of these vulnerable children and young people. To allow funding to follow the child, the future model will also have the ability to directly purchase vital services such as health, education, trauma and counselling support, so that children and young people can have immediate access to the assistance they need without delay.

The Ministry of Education is progressing the Disability Action plan priority ‘a Good Start in Life” which aims to improve and integrate support, information and services for families with a disabled child.

We will monitor the progress of this work stream and the effect of these reforms on disabled children and families.

IHC Submission to the Disabled Children: voluntary out-of-home placement review IHC Advocacy

The disabled children: voluntary out-of-home placement review Ministry of Social Development

Investing in New Zealand’s Children and Their Families Ministry of Social Development


Ombudsman responds to IHC request for data on involuntary sterilisation

Robert Martin’s biography mentions that girls and women he knew were sterilised or given contraception without their knowledge or consent. Dr Carol Hamilton from the University of Waikato has researched involuntary sterilisation of disabled women and girls and found that the numbers historically, were significant. Reasons given included management of menstruation or fear of pregnancy. Some disabled boys and men were also sterilised.

We know the practice of involuntary sterilisation continues in New Zealand, including to keep disabled children from growing into adults. But it is hard to find statistics. IHC Advocacy tried and failed to access any data on the topic through the Ministries of Health or Justice which are the agencies which have responsibility for such procedures. So in 2014 IHC wrote to the Ombudsman claiming the issue was a matter of significant public concern, as the practice contravenes several articles in the UN Convention on the Rights of Persons with Disabilities.

Ombudsman Ron Patterson recently replied to her inquiry agreeing that there is an issue about lack of information, particularly as protecting disabled people from non-therapeutic sterilisation has now been added as new priority in the Government’s updated Disability Action Plan. This followed the UN CRPD’s 2014 recommendation to New Zealand that we ought to ‘enact legislation prohibiting the use of sterilisation on boys and girls with disabilities, and on adults with disabilities, in the absence of their prior, fully informed and free consent’.

Dr Patterson’s letter outlined his attempts to find data. However, it seems that it is complicated by lack of appropriate coding input including in the Ministry of Health’s National Minimum Dataset of hospital admissions for sterilisations, and records held in the Ministry of Justice about decisions of the Family Court under Section 10 of the Protection of Personal and Property Rights Act 1988. This shows that any data is only as good as those who make the initial coding decisions and those who input the data. It seems that recording of involuntary sterilisation of disabled people is of low priority. Only one case of in the last five years was revealed this way. Staff were not prepared to do a manual check of hundreds of paper files of decisions which could have revealed more cases.

The Ombudsman noted that ‘lack of data makes it difficult to accurately identify (and then remedy) that barriers persons with disabilities face in contemporary New Zealand’.

However the Ministry of Health and the Ministry of Justice are the lead agencies for the Disability Action Plan’s new priority on addressing involuntary sterilisation. As the Ombudsman’s Office is part of the Independent Monitoring Mechanism for the UN Convention, they will be expecting progress. So will IHC.

Sterilisation and intellectually disabled people in New Zealand - still on the agenda? Kōtuitui: New Zealand Journal of Social Sciences Online


Court case to improve funding for respite carers

A Court of Appeal hearing has begun for a case that could lead to a pay rise for up to 30,000 respite carers. Currently respite carers are paid a maximum ‘subsidy’ of $75 for up to a 24 hour shift. Last year a respite carer from Kapiti took a case to the Employment Court which found under the ‘home worker’ definition in the Employment Relations Act, she was an employee and entitled to the minimum wage of $15.25 an hour, holidays and other minimum employment entitlements. Her employer, Capital Coast DHB, and the Ministry of Health, appealed the decision, arguing she was not an employee, and if she was, they were not the employer. John Ryall, the assistant national secretary of the E Tū union said respite carers did an important job in supporting some of the most vulnerable New Zealanders and deserved to be paid the minimum wage rather than just a subsidy for their work.

Carers stand to gain big payouts NZ Herald


Family threatened with prosecution unless son sent to residential special school

Last year NZ Herald journalist Kirsty Johnston wrote a series of articles about the problems many families were having accessing education for their disabled children. Evidence of exclusionary and unlawful practices continue with her latest story about a disabled boy from Nelson who has been denied access to any of the local schools, which contravenes the Education Act. Instead his parents have, bizarrely, been threatened with prosecution under the Act unless they send him to a residential special school in Christchurch, 300 kilometres away from their home.

No local school will enrol their son, and the Ministry of Education insists he must instead go to Halswell Residential College in Christchurch for a temporary placement. That school is currently being expanded to take more children from around New Zealand. However, his parents are desperate to keep him at home, and are applying for an exemption to temporarily home-school him until he is allowed back into a local school. They are tired of their son being labelled as naughty rather than having his disability needs recognised, and his mother said that it felt like the authorities were going to come and take him away to an institution.

Head of Advocacy for IHC Trish Grant said the threat to prosecute only served to further demonise the child. ‘Gone are the days when we sent these kids off to special places. We've closed down institutions and this boy has a right to be at home with his family and go to his local school,’ she said.

The Ministry of Education’s Intensive Wraparound Support system aims to keep children with behaviour issues supported in their local schools and communities, but is only available to a few of the many who apply, and is only for a maximum of two years. Thanks again to Kirsty for highlighting the educational rights of our disabled children. IHC Advocacy has recently been talking to the Ministry of Education about solutions to school exclusion.

'My autistic child is not a monster' New Zealand Herald

Future of Nelson's Salisbury special education school for girls in doubt New Zealand Herald


Disability stocktake: new data released

As part of the work of its Disability and Data Evidence Group the Office for Disability Issues surveyed government agencies for any disability data they collect. This stocktake has now been published on the Office for Disability Issues’ website. It records what disability or impairment information is held by each agency and whether it is publicly available. It also highlights what is not collected. This stocktake is an important start. As with the information about involuntary sterilisation, now that we have a benchmark it can be improved. In a significant move, this week the Ministry of Health released the first demographic report of clients using Disability Support Services (DSS) for the 2014 year. It contains rare and valuable information about numbers of people accessing DSS through the Needs Assessment and Service Coordination (NASC) system broken down by diagnosis of autism, intellectual disability or physical/sensory impairment, age, sex, ethnicity and region. It is interesting to see that those accessing support for autism, for example, are mostly young and male, whereas those accessing support for intellectual disability are generally older and live in regions where there used to be the big institutions.

We look forward to regular updates of this NASC data as well as information from other government databases.

Disability Data and Evidence Working Group Office for Disability Issues

Demographic Report on Clients Allocated the Ministry of Health’s Disability Support Services as at September 2014 Ministry of Health


Disability protests against movie ‘Me Before You’

The British movie ‘Me Before You’ has been attracting protests from disability groups in New Zealand and internationally. The movie tells the story of a man paralysed after an accident who choses euthanasia because his life is then apparently so hopeless, even though he is a wealthy banker. The role is played by a non-disabled actor. A large group of people from a Facebook group, ‘We demand better disability stories’, protested outside the Embassy Theatre Wellington on 15 June chanting slogans such as “assistance to live, not assistance to die”. Protest organisers from the Disabled Persons Assembly said negative attitudes towards people with disabilities were as disabling as physical problems. “We're sick of people doing anything they can to not be disabled - and that includes killing themselves - or just serving as a plot point to help other people”. The group Not Dead Yet Aotearoa also criticised such movies for ‘tired old stereotypes that exist only in overwrought imaginations. In this nightmare, we're better off dead, because no-one could possibly contemplate living a disabled life.’ The movie has been getting poor reviews from mainstream reviewers.

Boycott movie, disability advocates urge Radio NZ

Me Before You highlights tired old stereotypes Arts Access Aotearoa


Submissions sought for Parliamentary Inquiry into Captioning

For several decades we had a Teletext service on television whereby deaf or hearing impaired people could follow the news and sport. Although this service stopped a few years ago the technology now exists for captioning of television, other media, telecommunications and the internet. Although captions are a critical tool for deaf and hard of hearing people to participate in the world they are only rarely available.

Parliament’s Government Administration Committee has begun an Inquiry into Captioning in New Zealand, following pressure from MP Mojo Mathers and with support from Committee Chairperson Ruth Dyson. The terms of reference for the inquiry are wide and cover: International comparisons of captioning access; Issues around royalties and intellectual property; Legislation and regulation in terms of export of films (import to New Zealand; Public education/attitude towards captioning;  Responsibility for the provision of captioning (e.g. comparison with the Relay Service, an obligation under the Telecommunications provisions for Telecommunications companies to provide); Requirements under existing legislation and regulation in relation to advertising;  Potential for Captioning Watchdog (as in the United Kingdom), and other related matters which may arise.

The committee is calling for public submissions and would particularly like to hear from Deaf and hearing impaired people on these issues. The closing date for submissions is Thursday, 28 July 2016.

Inquiry into captioning in New Zealand  Scoop

Inquiry into captioning in New Zealand New Zealand Parliament