Hot Issues - March/April 2018

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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Join the conversation about reviewing our education system

Schools in crisis trying to support students with diverse learning needs

New Employment Support Practice Guidelines launched

Calls for repeal of Funded Family Care

UN Committee releases ‘list of issues’ for New Zealand Government

Consultation on Terms of Reference for Royal Commission on Historical Abuse

Killing prompts review of disability services

Autistic teenager kept in mental health unit for a year

Election Access Fund Bill to be debated

Self-advocates make video for World Down Syndrome Day

Community member vacancies for the Mental Health Review Tribunal

Over use of anti-psychotics for autism


Join the conversation about reviewing our education system

The Minister of Education has announced a three-year review of the public education system. As part of initial consultation the Ministry is running a survey until 31 May called ‘Join the Conversation’. The questions are:

1. If you were the boss of education in New Zealand, what would you do first?

2. What does a successful student of the future look like to you?

3. What will they need to know and be able to do?

4. What things need to be in place to make sure every learner is successful?

Education Minister Chris Hipkins says the education system should bring out the best in everyone and provide all New Zealanders with learning opportunities so they can discover and develop their full potential, engage fully in society, and lead rewarding and fulfilling lives. “We need a system – from the cradle to the grave – that is inclusive, that can adapt to the needs of the modern world. It needs to engage every learner – in a much more personalised learning experience. We need our people to be resilient, creative and adaptable, able to work collaboratively as well as independently”. Plans include a review of NCEA, a review of Tomorrow’s Schools, developing a future-focused Education Workforce Strategy, a continuous focus on raising achievement for Māori and Pasifika learners, an action plan for learning support, an early learning strategic plan, and a comprehensive review of school property.

Kōrero Mātauranga - let's talk about Education Join the conversation Ministry of Education

Ambitious three-year work programme for education Beehive

Education Portfolio Work Programme Ministry of Education


Schools in crisis trying to support students with diverse learning needs

A Wainuiomata primary school says it has reached crisis point with barely enough funding or support for its high needs students. One student with high needs receives no extra support and the school only has 50 hours a week of extra support to share around more than 330 students. The student, despite having high needs, does not qualify for extra support under the Ongoing Resources Scheme, and Associate Education Minister Tracey Martin says that’s not good enough. Another Wellington school has to top up insufficient ministry funding by $53,000 from its operations grant for children with learning support needs. A Palmerston North school has had to cut teacher-aide hours.

A recent North and South magazine article claimed that the lack of appropriate educational support for children with autism is leading in some cases to expulsion. IHC Director of Advocacy Trish Grant says in the article that funding for children with disabilities has been in the too-hard basket for 20 years. “International figures put the number of children with an additional need in any given school population at 14-20 percent, and yet in New Zealand only 3.1 percent of the school population is directly funded [for special needs]. Stopping a child from participating because of their disability contravenes not just New Zealand’s own laws, but the United Nations Declaration of the Rights of the Child.” Such injustices will be discussed at the IEAG conference ‘Creating Everyone’s Schools’ on 26-27 April at Berhampore School in Wellington. It is for anyone interested in inclusive schooling.

Education Minister Chris Hipkins told Radio New Zealand that the Government was planning to increase spending on education and that learning support for children with disabilities will be “at the front of the queue”.

School reaches crisis point over lack of funding for high needs students Newshub

A Wellington school's struggle to fund its special needs programme North and South/Noted

Struggling schools cut teacher aide hours to keep up with minimum wage increase Stuff

The curious incident of the boy in the headlines North and South/Noted

Creating Everyone's Schools: 26-27th April 2018 IEAG conference

Disabled children 'front of queue' for government funding Radio New Zealand


New Employment Support Practice Guidelines launched

Disability Issues Minister Carmel Sepuloni and Employment Minister Willie Jackson recently launched “Employment Support Practice Guidelines: How to support disabled people get the job they want”. These best-practice guidelines were prepared for the New Zealand Disability Support Network from evidence about what works well locally and internationally. They are in line with Article 26 (access to services) and Article 27 (the same rights to work as non-disabled people) of the UN Convention on the Rights of Persons with Disabilities.

The guidelines outline how relationships should work between disabled people seeking work, supported employment services and providers, potential employers and agencies such as ACC and Work and Income. They also state that employees should be paid at least the minimum wage, which signals the phasing out of minimum wage exemptions where disabled employees can be paid less than the minimum wage. The aim is to improve support, information and relationships, rather than compel employers to provide jobs for disabled people. The guidelines are available in accessible formats, including plain English.

Employment Support Practice Guidelines: How to support disabled people to get the job they want NZ Disability Support Network

Practice Guidelines to support disabled people into work NZ Government, Scoop

Guide for supporting disabled people into work commended PSA, Scoop


Calls for repeal of Funded Family Care

Legislation passed in 2013 by the former Government created strict limits on who could be paid and how much under the Funded Family Care scheme. The legislation excluded spouses and parents with younger children, and approved family carers could only get the minimum wage for a certain number of hours while other carers were paid at market rates. The disabled person had to agree to take on the employer role which was not realistic for many with high and complex needs. In a further insult, legal challenges were prohibited. So it is not surprising that only 350 families were able access the $23 million-a-year scheme, which expected to have up to 1600 families on its books.

Last year the Labour Party said it would repeal the legislation, Part 4A of the New Zealand Public Health and Disability Act 2000. However, some families fear that promise may have been forgotten. Health Minister David Clark said he had asked for options for reforming Funded Family Care, but the work was at the very early stages. Associate Health Minister Julie Anne Genter said she too was awaiting ministry advice on the best way to proceed. The Ministry of Health said Funded Family Care was under review, along with the rest of the disability support system, which it wants to make easier to access.

Family carers' heartfelt call on Government for law change NZ Herald

Andrew Geddis: Law discriminated against carers of their own NZ Herald


UN Committee releases ‘list of issues’ for New Zealand Government

The UN Committee on the Rights of Persons with Disabilities has released a list of issues it wants the New Zealand Government to report back on. It is New Zealand’s second review since ratifying the Convention in 2008. There are 100 issues listed, which relate to each of the Convention articles. These include questions about education, health, employment, accessibility, seclusion, restraint and data. Disability Issues Minister Carmel Sepuloni says the issues are far-ranging and affect all areas of disabled people’s lives. “I encourage any organisation, group, or individual, to provide feedback during the consultation process as it is those with lived experience and working close to the issues whose opinions we want to hear from most.”

The New Zealand Government’s response is due to the UN Committee on 9 March 2019. The Office for Disability Issues will coordinate the writing of this report and public consultation, which will happen later this year.

New Zealand's second review against the UN Convention on the Rights of Persons with Disabilities Office for Disability Issues

United Nations review an opportunity to improve the rights of disabled people Beehive


Consultation on terms of reference for Royal Commission on Historical Abuse

Before the Royal Commission on Historical Abuse in State Care can hear from survivors, families, staff and others they have to decide exactly what the inquiry will cover and how that will be done. Draft terms of reference have been published but there is now a consultation process to see whether these need to be altered. Responses are required by 30 April.

The terms of reference cover the Commission’s purpose, scope and how it will work. For example, state care means situations where the state has assumed direct or indirect responsibility for an individual’s care. This includes child welfare and youth justice placements, as well as care in health, disability and special education facilities (such as psychiatric hospitals and residential care facilities, residential special schools and health camps). The draft terms of reference cover physical, sexual and emotional abuse and neglect that happened between 1 January 1950 and 31 December 1999. Hopefully this period will be extended to cover the disabled children and family experiencing abuse before and after these dates.

The draft terms propose that the inquiry will work in an approachable manner sensitive to the needs of individuals, their families /whānau, or caregivers. But it is unclear how will they find and engage with disabled people who are survivors of institutional abuse who might be elderly, non-verbal or have learning disability. So this needs to be more clearly set out.

Historical Abuse in State Care Royal Commission Terms of Reference

The Royal Commission into state care abuse: how to make a public submission The Spinoff


Killing prompts review of disability services

Donella Knox is serving a four-year sentence for murder after killing her 21-year-old daughter Ruby in 2016. As a result of Ruby’s death the Nelson Marlborough District Health Board asked Auckland paediatrician Dr Rosemary Marks to review its disability support services. The review focuses on the transition from paediatric to adult care. It would also review what staff should do when a parent refuses treatment or interventions for their disabled child. Donella Knox will get a chance to read the report and be able to request that particularly private details are withheld from the report released to the public. The review is expected to recommend reforms to disability support services. Last year the sentencing judge offended many in the disability sector suggesting that the murder was “part mercy killing, part self-defence”. The murder of a human should never be considered a ‘mercy’ killing.

'Mercy killing' mother Donella Knox to read review prompted by daughter's death Stuff


Autistic teenager kept in mental health unit for a year

Joseph Mains has been in Tiaho Mai Mental Health Unit at Middlemore Hospital for a year because there are no suitable residential placements for him. His parents want him to live with support in the community and fear the longer he is in the unit, the harder it will be for him to get out. The 18 year old has autism, learning disability and other conditions and is heavily medicated. His parents are his welfare guardians. The experience has been traumatic for Joseph and his parents. He has been injured in restraint procedures and has been locked up in seclusion. For a short time he was discharged to a house with three others but the placement didn’t work and he was returned to the unit. His situation illustrates the lack of suitable facilities and support for young people with high and complex needs.

Teenager kept in Middlemore's mental health unit for a year NZ Herald


Election Access Fund Bill to be debated

A Private Member’s Bill to remove barriers to disabled people taking part in political life has been drawn in the ballot and will now be debated in Parliament. The bill, first sponsored by Former Green MP Mojo Mathers, was picked up by new Green MP Chloe Swarbrick.

This bill proposes establishing an Election Access Fund, to be administered by the Electoral Commission. The fund may be used by any disabled candidate to cover the disability-related costs of standing in a general election. These costs could include, for example: New Zealand Sign Language interpreter support for candidate forums, note-taking or transcribing costs, costs of translating material into Braille, or travel costs to attend candidate forums. The fund may be used by any not-for-profit body running accessible election education events or producing accessible election materials. The fund may also be used by any registered political party to support the access needs of any of their members to allow them to participate internally within the party.

This bill would give effect to New Zealand’s obligations under Article 29 of the United Nations Convention on the Rights of Persons with Disabilities, which confirms the right of disabled people to participate in political and public life.

Election Access Fund Bill Parliament

Thousands of Kiwis to benefit from Election Access Fund Bill Scoop


Self-advocates make video for World Down Syndrome Day

To mark World Down Syndrome Day on 21 March, the New Zealand Down Syndrome Association produced a video called ‘Dear Health Professionals’ featuring young New Zealanders with Down syndrome. Their message is about diversity and their equality as citizens, and they challenge health professionals to join them in sharing what they bring to the community. The awareness video is part of the international #WhatIBringToMyCommunity campaign for people with Down syndrome to speak up, be heard and influence policy and action.

Dear Health Professionals NZ Down Syndrome Association


Community member vacancies for the Mental Health Review Tribunal

The Ministry of Health is seeking candidates for appointment as the community and deputy community members of the Mental Health Review Tribunal. The specialised tribunal deals with difficult legal issues concerning mental health. It makes determinations and recommendations involving fundamental human rights with significant implications not only for the patients themselves but also for their families and the community. It is made up of a lawyer, a psychiatrist and a community member, one of whom is the convenor of the tribunal. There are also about a dozen deputy members. Applicants do not require a legal qualification to apply for these positions. Applications close Monday 30 April 2018.

Vacancies for lawyer members and deputy members of the Mental Health Review Tribunal New Zealand Law Society


UK study finds high use of anti-psychotics on children with autism and intellectual disability

New research from the UK suggests that treating autistic or intellectually disabled children with antipsychotics can have serious side-effects. The research looked at the records of more than 3000 children in Wales aged under 19 and found that the children with an intellectual disability or autism were more likely to be given an antipsychotic drug than those without. The study also found that those with an intellectual disability or autism were being prescribed antipsychotics at younger ages – and for a longer period – than those without an intellectual disability or autism. In addition, the data revealed that children in special schools, those with autism, and those with aggression, were especially likely to be prescribed an antipsychotic.

Antipsychotics are known to reduce the threshold at which a person has an epileptic seizure. The medication can also lead to weight gain and potentially diabetes. The authors of the report are concerned that the research shows that children with challenging behaviours are at risk of being prescribed antipsychotics when the aim should be to reduce the use of long-term medication by improving behavioural and psychological support for this vulnerable population.

Antipsychotics used to manage autism and intellectual disability behaviour can have serious side effects – new study The Conversation