Hot Issues February 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.
Subscribe here to receive our monthly IHC Hot Issues newsletter via email.
Inside IHC Hot Issues:
- Why do we still lock up disabled people in seclusion?
- Immigration New Zealand Declines Residency for Disabled People
- Unveiling of Memorial to Forgotten Patients at Tokanui Hospital
- Back to Court for Payment for Years of Caring
- SENCO Survey Reveals Unmet Need for Diverse Learners
- Does Attack on Elderly Disabled Man Reflect our Attitude to Disability?
- Disability Makes Life Harder for Refugees
Why do we still lock up disabled people in seclusion?
It may shock some New Zealanders to hear that there are people with intellectual disability who have committed no crime but who are locked up indefinitely in solitary confinement. In mental health terminology it is called seclusion and is only supposed to be used in extreme situations for a short amount of time when the patient is at severe risk of hurting themselves or others. But for some people the seclusion (with only short periods out of their locked rooms) can go on for months or years.
Ministry of Health policy is to reduce the practice. From 14 DHBs which provided data to a journalist recently, there were still almost 3,000 recorded instances of seclusion in the past year. In 2013, there was a nationwide total of 2,637 seclusion ‘events’ according to the Director of Mental Health’s Annual Report. Some professionals fear that there is not enough funding for the extra resources required to implement new guidelines and get rid of the practice.
One of those people is Ashley Peacock. He is in a long term secure mental health facility called Tawhirimatea under the Central Regional Forensic Mental Health Service on the site of the former Porirua Hospital, owned by the Capital and Coast District Health Board. The Mental Health, Addictions and Intellectual Disability Directorate of Capital and Coast District Health Board is a provider of specialist intellectual disability services which holds the national intellectual disability care agency (NIDCA) contract by the Ministry of Health. NIDCA provides the needs assessment and service coordination required for those people with an intellectual disability being managed under the Ministry’s High and Complex Framework. Like everything else in Ashley’s story, the organisational structure and responsibility is complex and not straightforward.
Ashley’s case has been covered in the media, most recently a documentary for Attitude TV called ‘Seclusion’. To the viewer Ashley appears to be a regular person with autism in his 30s, who enjoys the outdoors including bush walks with friends, surfing and fishing. He is knowledgeable about the flora and fauna. Why then does he need to return to the facility and put in regular seclusion? Why has he remained locked up in various facilities for over a decade even after extensive advocacy by his parents plus the efforts of various NGOs (including considerable input from IHC Advocacy), several media reports, recommendations from the Ombudsman’s office, complaints to the Health and Disability Commissioner, the intervention of the Disability Rights Commissioner and even a report from the United Nations criticising New Zealand’s use of seclusion? What is going on?
There is no question that Ashley’s situation is exacerbated by the inter relationship of his mental health, autism and intellectual disability needs but there is growing acknowledgement from the specialists involved in his care that the hospital and secure environments are making him less well and compromising his wellbeing.
The Restraint Minimisation and Safe Practice Standard defines seclusion as the placing of a person at any time, and for any duration, alone in an area where he/she cannot freely exit. The Mental Health Act 1992 states seclusion should never be used for discipline, staff convenience or as a substitute for adequate staffing levels. The duration and circumstances of each episode must be recorded. Ashley is also subject to the 2003 Intellectual Disability Compulsory Care and Rehabilitation Act.
Under Article 13 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) disabled people must have access to justice on an equal basis with others, including legal aid and legal representation. As New Zealand has not signed the Optional Protocol of the CRPD the public cannot take individual cases to the United Nations under that Convention.
However, two years ago, the United Nations Working Group on Arbitrary Detention visited New Zealand and expressed concern at how the mental health system was operating. They also urged the authorities to eliminate seclusion entirely. In their report on the Detention of Persons with Mental or Intellectual Disabilities they said compulsory treatment orders (under the Mental Health Act of 1992) often involved clinical decisions too difficult to challenge. Despite the Mental Health Act and the Disability Convention guaranteeing the right to legal advice for all patients, they found that people undergoing compulsory assessments were often unrepresented and could not access legal aid. Without legal aid Ashley’s parents cannot afford legal fees of up to $500 an hour.
Paul Gibson, Disability Rights Commissioner, says we are only halfway to reforming our mental health system to align it with the disability convention, so that people with a psycho-social disability have the same rights, freedoms, opportunities, protections, and great lives as everyone else. Paul also noted that the freedom of the outdoors helped Ashley keep well just at it helped many New Zealanders. He questioned the risk to the community posed by Ashley, “whatever the risk, the response to the risk (several years in seclusion) is way out of proportion to how society responds when a non-disabled person is of similar risk”.
Ashley’s parents remain committed to getting him out of Tawhirimatea and into a home in the community near them, supported by professional carers. A provider has started training staff to make this happen. A house is now required to provide the service in. After years of neglect Ashley now needs urgent, extensive dental work and although an appointment was made treatment has been delayed. There are also still unresolved complaints to the Health and Disability Commissioner. The NIDCA, which acts as his needs assessor and service coordinator, has also carried out a review. Still Ashley and his family wait. After years of the trauma of seclusion he will need ongoing support, and hopefully lots of fishing will help.
To resolve the situation, which must be extremely expensive to the state, all the parties affected need to get together, such as in a facilitated Family Group Conference, and work out a solution which is centred around Ashley, not on the needs of the state and its agencies. Those represented should include people from Capital Coast Health, NIDCA, the Ministry of Health’s Disability Support as well as Mental Health, Housing New Zealand, unions, NGOs, the community provider, and of course the family.
A Facebook page called Freedom for Ashley Peacock has been set up and will report progress.
Seclusion Attitude Live
Halfway down Dominion Road Attitude Live
Our stories of seclusion End Seclusion Now
UN Working Group on Arbitrary Detention Statement Peace Movement Aotearoa
Immigration New Zealand declines residency for disabled people
Since the 1880s New Zealand has had immigration acts which discriminate against disabled people. Despite the United Nations Convention on the Rights of Persons with Disabilities outlawing such discrimination and the New Zealand Government ratifying the Convention, this situation persists. Two recent cases have highlighted the issues.
An award-winning the University of Auckland mathematics professor will now leave New Zealand after his residency application was rejected because of his stepson’s autism. Professor Dimitri Leemans moved to New Zealand from Belgium in August 2011 with his wife, daughter and stepson for a job at the University of Auckland. He has won a New Zealand Mathematical Society Research Award and a Marsden grant of $580,000 for his work in mathematics. Leemans and his family applied for residency in 2014, but in September 2015 learned that Immigration New Zealand declined their application because the stepson does not meet the health requirements and is not eligible for a medical waiver. The family have decided not to appeal the decision and will leave in June. Professor Leemans said “Once I saw that Immigration New Zealand had decided it is above the UN convention of human rights, it is difficult for me to decide to raise my children here. For me the New Zealand story ends.”
Disability advocate Juliana Carvalho is also battling to stay here. The Brazilian-born woman, who uses a wheelchair and has been here since 2012 has been rejected for residency because of similar fears by the Government that she may be a burden on the health system. Her family and her doctor say that is unlikely. Juliana shares a house in South Auckland, with her brother, sister and mother, who are all New Zealand residents, and also has considerable community support because of her disability advocacy work. A letter from her doctor said, “she is a completely independent person who does not need help with anything at the moment. I do not anticipate she will cost the Government any more money than a normal citizen in the foreseeable future.” She has appealed to the Immigration and Protection Tribunal, claiming the department hasn’t followed its own policies. She said “a lot of people see disability as an illness and it is not. I am not a burden”.
‘For me the New Zealand story ends’ New Zealand Herald
Disabled migrant’s fight NZ Herald
Unveiling of Memorial to Forgotten Patients at Tokanui Hospital
On 20 February a memorial was unveiled in a small South Waikato cemetery listing 456 former patients who died at Tokanui Psychiatric Hospital. The hospital closed in 1998 but the hundreds of patients who died there have been lying in unmarked graves. Among those buried there are war veterans going back as far as the South African War at the beginning of the 20th century. Following publicity in 2014 about the unmarked graves a community project was developed to trace and name all those buried there. These names are now on a granite memorial wall donated by a local funeral director. Space has been left on the memorial in case other people are traced and identified. A dawn service for descendants and others with links to Tokanui was held attended by Catholic and Anglican bishops from the diocese and the RSA chaplain. The project has restored some dignity to those who lived and died at Tokanui under New Zealand’s former policies of institutionalisation. How many other former institutions also have unmarked graves of former patients?
Back to Court for Payment for Years of Caring
For over a decade Margaret Spencer’s has battled the Ministry of Health for payment for caring for her disabled adult son Paul who has Down syndrome. This month the Auckland High Court heard the latest appeal. The Ministry has challenged her through the Human Rights Tribunal, the High Court and the Court of Appeal but each time the court ruled in Ms Spencer’s favour, although as a family carer she was not entitled to payment under previous Ministry of Health rules. But after the Atkinson case ruled that that family carers should be paid and that the Ministry of Health’s family policy was discriminatory, Ms Spencer decided to seek compensation of hundreds of thousands of dollars.
At the Auckland High Court this month there was a large contingent of lawyers, two laymen to advise the judge and many files of evidence. The Judge’s decision was reserved meaning it won’t be released for a while. However, there remains the question as to why, in times of fiscal constraint, the Ministry of Health has spent so much money and resources fighting one family over disability care?
Mother’s long battle for disability compensation reaches High Court New Zealand Herald
Crown refusing to back down in long pay fight New Zealand Herald
SENCO Survey Reveals Unmet Need for Diverse Learners
In September last year NZEI Te Riu Roa (one of the teacher unions) sent out a survey to find out about the roles and concerns of SENCOs in schools. SENCOs are Special Education Needs Coordinators and not all schools have them as there is no official requirement for them and the role does not generate any additional staffing, management or release time. Yet many schools find it valuable to have a teacher in this specialist role as issues around teaching and learning for students with diverse learning needs and impairments such as autism can be complex. But there is little data available about disabled children in schools.
The survey shows that the 1 percent ORS targeted funding for teacher aides, and additional supports through Special Educational Grants and Resource Teacher of Learning and Behaviour support, are vastly inadequate for the need out there. Schools which kept special needs registers had an average of 16 percent of students on the school roll on them. SENCOs said that 60 percent of students on the register were not getting the support they needed and 89 percent of SENCOs consider that government support is inadequate. This is valuable data in an area in which we have very little, and supports anecdotal reports from parents and schools.
The survey confirms findings from IHC survey’s administered to provide evidence in the legal action currently before the Human Rights Review Tribunal. Too many disabled children and young people continue to experience discriminatory outcomes at school due to flawed policy and funding frameworks. IHC has called for an “open the books” exercise.
Supporting Diverse Learners NZEI Te Riu Roa
More evidence that children aren’t getting a fair deal at school IHC New Zealand
Does attack on elderly disabled man reflect our attitude to disability?
Concern about attitudes to disability and older people have been expressed following an attack on a 95-year-old Palmerston North man riding his mobility scooter. About six or seven local children aged under 10 allegedly jumped on his mobility scooter and tried to push him off and take his keys. This happened in one of the city’s main roads in daylight and fortunately a man driving past saw what was happening intervened and the children ran away.
Following the attack support for the man has come from around New Zealand “We wanted to show (him) that old people are still appreciated by society. It’s not the country I want my kids to grow up in or my grandparents to still be living in”, said one. However, more worrying is the underlying negative attitudes to disability revealed by the attack. This may have been influenced by decades of policies which have not valued or supported disabled people.
Disability makes life harder for refugees
Many people are currently fleeing Syria and other conflict areas for safer countries. This is a difficult journey which is extra hard when you have a disabled child. One family with a disabled teenage son had problems when fleeing Syria for nearby Lebanon, but as the mother says her story is only one of at least two million. As well as dealing with displacement and general disorientation, they had a hard time finding accessible housing with a ground level room, a school that would take him, and getting the medical care he needs. The school that would take them was a distance away and the family cannot afford the bus so the mother walks him there an hour each way. But even at the school support is minimal. This is what it means to be a refugee. You lose your home, your citizenship, security and stability. If your child has a disability the struggle is harder. Many times you are told, “We cannot help you here.”
Under international treaties on refugees, children, and people with disabilities have a right to health care and education, even in situations of conflict. New Zealand could be a leader in welcoming disabled refugees.
We cannot help you here Open Democracy