IHC Hot Issues - October 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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Inside IHC Hot Issues:

  • Seclusion rooms in use in several schools
  • Increase in ‘informal removals’ from schools of students with special educational needs
  • Education for All petition
  • Feedback required for Ministry of Health’s respite review
  • Depression and sleep problems common in adults with autism
  • People’s review of the mental health system
  • Optional Protocol for the UN Convention on the Rights of Persons with Disabilities comes into force
  • Human Rights Commission review of Seclusion and Restraint
  • What is a home? Workshop with Michael Kendrick
  • Immigration denied to disabled child

 

Seclusion rooms in use at many schools

The fallout from the revelation about the use of seclusion rooms for disabled children at a Wellington school has dominated news this month. At least 10 children have been locked in the small dark room over the last year at Miramar Central School, some of them with autism. The practice was discovered after a therapist came to collect her 11 year old autistic student and couldn’t find him, but heard him calling out from the hidden room. There was soon an official report from the Ministry of Education and the Ombudsman announced an investigation into the practice. IHC Advocacy welcomed the investigation, asked to be represented on the investigation panel, and called for all such rooms to be shut down.

The Minister of Education has now revealed that there are several such rooms at schools across New Zealand and she has asked for the practise to stop.

The Ministry of Education has been working on new guidelines around seclusion and restraint, which are due out before the end of the year. The Minister said, ‘The Ministry will work with these schools to put in place safer and more effective ways of managing challenging behaviour.’

However, it is unknown how many mainstream or special schools are using such practices, as schools are not required to report them. Parents of one child who had been frequently placed in a room at Miramar Central had no idea of the practice or the room and the use of the room was not included in behaviour plans or mentioned on the school's websites. Not all cases were logged. The Ombudsman’s investigation will consider the actions of the schools concerned, the extent of the practice, and any related actions or omissions of Government agencies.

However, this has shown up widespread gaps in understanding and knowledge by schools about disabled children and behaviour. It also normalises seclusion as an intervention or punishment. We know that autistic adults such as Ashley Peacock are subjected to this practice and now it seems it is also common for many children. There has been a lot of commentary on this issue, including from the media, from the Ministry and from parents, and a selection is included here.

IHC says it’s time to shut seclusion rooms for good Scoop

School punishment: 11-year-old locked in 'dark cell' 13 times in 9 days NZ Herald

Seclusion rooms to be investigated NZ Herald

Up to 9 seclusion rooms in special schools NZ Herald

Investigation into the use of seclusion at Miramar Central School Ministry of Education

Editorial: Seclusion highlights special education failure Press

Minister should have acted sooner over seclusion rooms - Greens Radio New Zealand

Seclusion versus Time Out, and Alternatives Autism and Oughtisms blog

The Miramar Central scandal lays bare a cavalier culture at the Ministry of Education The Spinoff

 

Increase in ‘informal removals’ from schools of students with special educational needs

A new report by YouthLaw Aotearoa has shown an increase in ‘informal removals’ of children with special educational needs from schools. These are sometimes known as ‘kiwi suspensions’ and involve pressure on families to remove their child, but are not officially reported. The findings are based on YouthLaw's own case work and a national survey and reveal students with special education needs are ‘grossly over-represented’ among students who are being informally removed from schools. Many of them are students with autism or ADHD. The report also found considerable barriers for many children to enrolment and participation, and provides a series of anonymous case studies of children across New Zealand. YouthLaw is asking for greater guidance and oversight from the Ministry of Education and the development of an appeals tribunal. This report backs up IHC’s ongoing education complaint to the Human Rights Review Tribunal.

Report into Informal Student Removals from School Published by YouthLaw Youthlaw

Difficult students pressured to leave NZ Herald

IHC's education complaint IHC

 

Education for All petition

The Education for All petition to the Minister of Education is still open for signatures. The Education for All network is made up of disabled people, families, educators and service providers who are disappointed and frustrated at the continued lack of commitment to ensuring that disabled people have access to a properly resourced and inclusive education. There have been numerous reviews, consultation and inquiries into ‘special education’ for many years and yet the barriers remain the same:

  • Children unable to exercise their right to attend their local schools.
  • Children being sent home part-way through the day because of lack of learning support.
  • Children being excluded from accessing the curriculum, as well as participating in sports, recreation and cultural activities.
  • Families having to pay for their children’s Teacher Aides and additional learning supports.
  • Schools having to fundraise and use operational funding to top up special education funding.
  • Extremely limited tertiary and adult education options for disabled people, particularly those with learning disabilities.
  • Lack of access to assistive technologies.
  • Lack of inclusive education training for graduating teachers.
  • Piecemeal access to professional development for teachers, support staff and schools

Education for All Petition

 

Feedback required for Ministry of Health’s respite review

The Ministry of Health is developing a new Respite Strategy. Respite aims to provide families/whanau/aiga or carers with a planned, temporary break from caring for a person with disability. 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. Respite is also a way the disabled person can have a break from their normal routine. The Respite Strategy objectives are to enable families, whānau, aiga, and disabled people: greater choice, control and flexibility over their respite options and how they are funded or purchased; access to respite at a time and in a way that suits their needs.

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) – it may be provided (for example) in the home, the community, or afterschool and holiday programmes; Host-family respite - support is provided in another family’s home (usually for an overnight break); Facility-based respite - 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.

Out of scope for this review are: changes to Disability Support Services eligibility criteria; mental health, health of older people and ACC respite; equipment modification and environmental support services; behaviour support services.

Respite Survey for Families                  

Respite Survey for Providers

Respite Strategy 2016/17 Ministry of Health

 

Depression and sleep problems common in adults with autism

New research shows that adults with autism are four times more likely to experience depression than other people. IHC and IDEA Services’ Martyn Matthews has published a six-year study of the mental health of adults with autism from his PhD research. He found that 26% of adults with autism were experiencing depression and that 39% of those with autism plus an intellectual disability and 60% of those with autism only, were taking anti-depressant medications. Because of the high prevalence of depression they come into frequent contact with psychiatric services where their autism is not well understood. Help was often hard to access. ‘The combination of an atypical presentation of depression in adults with autism and the difficulties which people with autism face in describing their thoughts and feelings, highlights a need for different assessment approaches,’ said Martyn. Using a specialised psychiatric screening tools could benefit both adults, and service providers so they can understand the mental health needs of adults with autism.

Recent Melbourne research on adults with autism found that poor sleep quality and insomnia are common in adults with autism. In the study adults with autism took a significantly longer time to fall asleep, had more brief arousals from sleep, and had poorer sleep quality compared other  adults. The ability to self-select bedtimes, the presence of anxiety and depression, and unemployment may contribute towards these sleep problems. Low melatonin levels and high stress levels may also contribute to sleep difficulties.

Depression Common in Adults with Autism  Scoop

The nature of sleep difficulties in adults with autism Olga Tennison Autism Research Centre, La Trobe University, Melbourne

 

People’s review of the mental health system

Ashley Peacock’s story is just one that shows that people are not getting appropriate support for their mental health needs. The public mental health system in New Zealand is in crisis, but the Government and the Ministry of Health are refusing to run an official review. So a group of New Zealanders decided to run their own people’s review of the mental health system, whereby members of the public are encouraged to tell their own stories. Hundreds of stories of people’s experiences have already been published on the website and they will continue to collect them until the end of November. They are already getting a picture of long wait times to access appropriate treatment, of services stretched to breaking point, of families fear and frustration when their loved ones are at risk, and of professionals exhausted and burned out. At the end of this Public Review they will write a Review report for submission to the Minister of Health and the Director for Mental Health with a goal to force a review and change.

People's review of the mental health system: a crowdsourced story project by New Zealanders

 

Optional Protocol for the UN Convention on the Rights of Persons with Disabilities comes into force

New Zealand has finally acceded to the Optional Protocol to the Convention on the Rights of Persons with Disabilities (CRPD), eight years after we ratified the Convention. The Optional Protocol enables individuals or groups, who have had their rights breached under the CRPD, to make a complaint to the United Nations Committee that  monitors it. Previously only the Government or approved civil society groups could take such complaints to the United Nations. Complaints by disabled people about seclusion have had to be taken under the Convention Against Torture. Now there is a pathway for people to take complaints for the range of issues covered by the Articles in the CRPD. The Optional Protocol came into force for New Zealand on 20 October 2016.

UN protocol for disabled people finalised Beehive

Parliamentary Select Committee Report NZ Parliament

 

Human Rights Commission review of Seclusion and Restraint

The use of seclusion and restraint can infringe human rights, including of disabled people. The Human Rights Commission has a current project identifying best practice and policy in seclusion and restraint, both in New Zealand and internationally, and will write a report to help guide New Zealand’s policies and practices. They have engaged an international expert in seclusion practices to assist with this important project in October and November. She will visit detention facilities such as prisons and mental health units and meet with people with useful information. They are keen to hear from people or groups who have experienced seclusion or restraint within a prison, a mental health unit, a care and protection residence, a youth justice facility or a police cell. Submissions are due by Thursday 3 November.

Seclusion and Restraint: Do you want to share your experience? Human Rights Commission

 

What is a home? Workshop with Michael Kendrick

‘Home’ is a reflection of a person’s life, relationships and identity. However, for people with disabilities, homes are often primarily ‘facilities’ for service provision or custodial care. How can we create homes and home life for disabled adults that are richer, more fulfilling, and empowering? Dr Michael Kendrick’s November workshops will explore what makes the difference in moving from the reality of a residential facility to a ‘home of one's own’. US based Dr Kendrick has many years’ experience in innovative and ethical practices in disability service provision and is a frequent visitor to New Zealand. ImagineBetter is hosting two workshops, in Auckland (8 November) and Bay of Plenty (9 November), with LifeUnlimited hosting a Wellington workshop on 10 November. Registration is essential.

What is a home? Workshop with Michael Kendrick Imagine Better

Kendrick Consulting

 

Immigration denied to disabled child

New Zealand has ratified the Convention on the Rights of Persons with Disabilities but our immigration laws contradict the human rights it enshrines. We hear regular stories of families with disabled members who are unable to immigrate to New Zealand because of fear of disability and an assumption about the expense of their care. The latest situation regards a Nepalese family with two sons. Immigration New Zealand has granted permanent residency for one son but not the other. The 12 year old has cerebral palsy and is deemed to ‘impose undue costs or demands’ on the public health system. His mother has been fighting for more than two years to bring him over to live with her and his brother. An appeal to the Immigration and Protection Tribunal was also dismissed as assessors determined the boy would qualify for funding under the Ongoing Resourcing Scheme (although as ORS is so hard to get we are not so sure about that). A paediatrician said he would also require physiotherapy and speech therapy, hearing aids and glasses, and would need 24-hour assistance. His mother said the extended family would take care of her son.

Mother forced to choose between two sons NZ Herald