IHC Hot Issues July 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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Making citizenship and rights real in the lives of people with intellectual disabilities
In 2003 the landmark “To Have an ‘Ordinary’ Life” report was published. It detailed what needed to happen in order for adults with intellectual disability to live well in the community. It followed the development of the New Zealand Disability Strategy and the closure of the institutions. It looked at the importance of relationships, independence, good health and having choices about who to live with and how to organise your time. It was backed up by a series of research reports from Dunedin’s Donald Beasley Institute, to which disabled people themselves had contributed.
That report is now 13 years out of date, and long out of print. We now have the United Nations Convention on Persons with Disabilities, the Disability Strategy is being revised, and we have higher expectations of rights for all our citizens with intellectual or learning disability. IHC has prepared a new document for people of all ages, called “Making citizenship and rights real in the lives of people with intellectual disabilities”. It looks at what has happened since 2003, and notes whether there has been any progress on the recommendations of the “To have an ‘Ordinary’ Life” report. It details what still needs to happen in numerous areas including education, community inclusion, self-advocacy, employment, financial independence, health and embedding rights. Simple indicators and measures are listed to measure these things. One example of an indicator is “children with developmental delay/intellectual disability participate at same rates as their non-disabled peers in early childhood education”. That could be measured by official educational data and IHC surveys.
This citizenship report will be a living document and from next year “IHC will work with others to report annually on progress, achievements and shortfalls in the aim of making citizenship and rights real for people with intellectual disability and their families and whānau. We will report against the Minister of Disability Issues’ Annual Report on the implementation of the New Zealand Disability Strategy and the monitoring framework that will be developed by the Office for Disability Issues to support the revision of the 2016 – 2026 Strategy.”
To have an ‘ordinary’ life: kia whai oranga ‘noa’: Ministry of Health
A Life for Ashley Petition and other “cruel, degrading and inhuman” cases
Over the last few months Hot Issues has been reporting on the campaign, A Life for Ashley. For several years a 38 year old man, Ashley Peacock, who has mental health needs, autism and intellectual disability, has been locked up under the Mental Health Act in the Tawhirimatea Unit on the old Porirua Hospital site. This month there were two significant advances on the pathway to get him a more appropriate placement in the community. A petition was launched, and his story was featured on TVNZ’s Sunday programme and viewed by over half a million people. Other media reports followed. With the newspaper and social media coverage, much of New Zealand has now heard about Ashley and his unacceptable situation. Some of the media coverage quoted the Ombudsman Judge Peter Boshier’s assessment of Ashley’s case as “cruel, degrading and inhuman”.
The petition circulating on social media calls for “the Minister of Health, Hon Jonathan Coleman to intervene under Section 32 of the Public Health and Disability Act 2000 in the case of Ashley Peacock. We request that Ashley Peacock be urgently relocated to an individualised service in the community with appropriate levels of support, with a clear time frame.”
It has now been revealed that Ashley is not the only one stuck in a secure unit in breach of our international human rights obligations. Over 60 reports into mental health and disability units have revealed other examples of poor care, overcrowding, untrained staff and lack of access to fresh air or water. Three other cases are as serious as Ashley’s. The Chief Ombudsman is considering launching a special inquiry.
Three other men with intellectual disability who are “special patients” in similar situations to Ashley are suing the Government, alleging ill treatment such as warehousing, neglect and discrimination in forensic health facilities. The case is being heard in the High Court at Wellington, with five defendants including the Attorney-General and two district health boards accused of various human rights abuses.
As a result of the publicity about Ashley it was revealed that another autistic man was living in inappropriate conditions. He lived alone in a grubby room with little furniture and boarded up windows because staff were apparently unable to deal with his behaviour. The care facility had just passed its audit despite complaints. But the area where the man lived has now been closed down by the Ministry of Health. He has been transferred to another provider where his family says he is doing much better.
These cases illustrate that we have urgent work to do in making citizenship rights real for some people with intellectual disability.
Petition for Ashley gathers support New Zealand Herald
Locked In Sunday, TVNZ
Uncovered: 'Inhuman' care in hospitals NZ Herald
Disabled patients sue Government NZ Herald
Win for paid parent carers
For several years Margaret Spencer has been battling the Government through the Ministry of Health for payment and compensation for caring for her adult son Paul, who has Down Syndrome. She has now been awarded over $200,000 for “pecuniary loss” by the High Court. The Government kept fighting the case against rulings against them in the Human Rights Tribunal, the High Court and then the Court of Appeal. She continued to pursue compensation after a court ruled in a separate judgment - known as the Atkinson case - that the Ministry of Health's family policy was discriminatory. Then Parliament passed legislation preventing further claimants from the Atkinson proceedings.
After the recent ruling Margaret Spencer said that her human rights have now been upheld. “We have been vindicated and I welcome the court's decision”. Chief Human Rights Commissioner David Rutherford paid tribute to their battle expressing his gratitude to New Zealanders like her who fight for human rights. He said, “We welcome the court's order that the Ministry of Health should educate its staff about the importance of the human rights of disabled people and their caregivers. Public policies that uphold and promote human rights principles deliver better outcomes for all New Zealanders.”
Join the Conversation for a new Disability Strategy Part 2
The Office for Disability Issues is currently leading a revision of the 2001 New Zealand Disability Strategy. An Expert Reference Group has been meeting for several months and the first phase of the Consultation called “Join the Conversation” gathered suggestions for a strategy about the future for disabled people in New Zealand. Hundreds of people attended workshops and others provided feedback through the Join the Conversation website. Following that feedback, a draft revised strategy has been prepared by the Office for Disability Issues. There will now be a fresh “conversation” until 21 August about this draft before it is finalised. Feedback is being sought through regional workshops, groups and through the website. It is vital that disabled people tell those developing the Strategy what their issues are.
Join the Conversation Latest Updates Office for Disability Issues
Optional Protocol of the CRPD will mean individuals can take complaints
Parliament’s Justice and Electoral Committee is considering whether to ratify the Optional Protocol to the Convention on the Rights of Persons with Disabilities. If the Optional Protocol is ratified it will mean that individuals will be able to take complaints under the Convention directly to the United Nations, something which they are not currently allowed to do. The Optional Protocol is a side-agreement to the Convention which New Zealand ratified in September 2008. It allows the Committee on the Rights of Persons with Disabilities (the Committee to which Robert Martin was recently elected) to consider complaints from individuals or groups who claim their rights under the Convention have been violated. The Committee can then investigate the complaint and make recommendations to the New Zealand Government. Although the Committee’s recommendations are not binding, they hold considerable moral force.
Auckland Disability Law says that it is important for New Zealand to ratify the Optional Protocol because:
- All people should have the right to access all available complaint processes. Disabled persons being unable to access the complaints processes of the UNCRPD denies this human right.
- Disabled people report that the government and its agencies ignore their rights under the UNCRPD, and continue to pass laws that are inconsistent with the Convention and for which there is no remedy.
- It is over seven years since the New Zealand government ratified the UNCRPD. Over 90 countries have ratified the optional protocol. It is time that New Zealand joined those countries.
Submissions to the Justice and Electoral Committee are due by 9 August. This is the opportunity for New Zealanders to tell the government why we need to ratify the Optional Protocol.
Submission on the Optional Protocol Auckland Disability Law
IHC Advocacy’s submission to Social Security Rewrite Bill
This month IHC Advocacy presented a submission to the parliamentary select committee which is considering the Bill which updates and rewrites parts of the Social Security Act. The original 1938 Act marked the beginning of New Zealand’s welfare state so it is of major significance for disabled people and families. But the last major revision to the legislation which provides fundamental legal entitlements to social assistance delivered through the benefit system was in 1964. Since then the names of the benefits have changed and entitlements have been replaced by eligibility requirements.
IHC’s submission’s key points included:
- Support for the rewrite of the legislation to make it easier to understand and use.
- Continued serious concerns about the narrow approach of the welfare reform’s investment approach and this being entrenched in the rewrite of Social Security legislation.
- Legislation, policy and practices need to better reflect the reality and complexity of people’s lives.
- Calls for better recognition that intellectual disability is life-long and support should be provided in ways that are respectful and value everyone’s lives and contributions.
- Better across government alignment and working with people with disabilities and their families and whānau and communities are of critical importance in the achievement of connected and cohesive supports and systems.
Since the introduction of the welfare reform agenda IHC has expressed strong concerns about the direction that some aspects of legislation, policy and practices have taken that have eroded our social security system and made it less “social” and less “secure”. We reiterate those strong concerns with regard to the entrenching of a narrow investment approach in the proposed changes in the Bill. Our social security system should ensure that everyone gets the support they need to live good lives and reflect the values of interdependence, social cohesiveness and the common good. A critical component of an effective system is getting supports.
- That the phrase “welfare dependency” be removed and the wording be changed to better convey the obligation to provide appropriate supports and services for all in order to enhance wellbeing and find and sustain work.
- That a broader social investment approach be embedded in the Bill to support policy and practices that enable the realisation of people’s rights to support for an adequate standard of living and for work.
- That MSD’s efforts to address barriers to taking up more hours of paid work and improve the responsiveness and efficiency of services and systems be extended to investigate options such as a universal income exemption for people on the Supported Living Payment and/or increasing the amount that people can earn before abatement rates start.
- That increased efforts be made to get better across government working and alignment and in working collaboratively with disabled people and their families and whanau, communities and service providers.
The Social Security Legislation Rewrite Bill Ministry of Social Development
Social Security Legislation Rewrite Bill NZ Parliament
Homeless family has four disabled children
The housing crisis has been in the news for several months. One story illustrated the impact on families with disabled children and the lack of services which makes their situation even more difficult. The family with four disabled children have been seeking a home after returning from Australia. The children aged 10-17 have a variety of impairments including cerebral palsy, autism and intellectual disability. They desperately need an accessible house. They had been staying with family which made 16 people in one house, then in a motel which they could not afford. A kind stranger then offered some space in her own house as a temporary solution. The Ministry of Social Development said the family had a very high priority rating for a modified four-bedroom home, but none was available. The story also mentioned that the youngest child doesn’t attend school because of a lack of funding for her special needs. They have even had to borrow a wheelchair for their oldest one. This situation shows how serious flaws in Government policies can badly affect families with disabled members, and that urgent action is required.
Serious lack of post-operative care for boy with Down Syndrome
Problems with lack of communication and responsibility between District Health Boards meant a boy with Down Syndrome missed out on vital care after surgery. It also reveals the funding stress the public health system is under. Media publicity was required to help fix the problems for the family.
The Taihape boy had surgery in Auckland’s Starship Hospital to fix a dislocated hip caused by loose ligaments. Whanganui DHB was meant to provide after care. The boy was flown from Auckland to Whanganui in an air ambulance in a full body cast, and was then transferred to a regular ambulance for the long ride to their rural home. But on the way they were told their order for a hospital bed, wheelchair and a hip spica chair had all been cancelled by the Whanganui DHB. Neither would the occupational therapist be visiting. Requests made by the family's social worker and GP for home help were also turned down by the DHB.
The DHB eventually sent some equipment but it wasn’t fit for purpose. So after struggling to lift and care for their son, the family hired a private hospital bed, made their own wheelchair from an old pushchair and bought a hip spica chair so he could sit up. The Whanganui DHB denied cancelling the order and the OT, and they said it provided what was requested by Starship. However, after media publicity help was provided. The Whanganui DHB said they would take care to ensure the next stage of treatment for the boy goes more smoothly. But this story reveals that with heavily stretched DHB funding and services, cuts will be made, sometimes randomly.
Boy with Down Syndrome had 'diabolical' post-op aftercare, say family Radio New Zealand
Family to be reimbursed for disabled son's care Radio New Zealand