IHC Hot Issues - November/December 2017

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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IHC survey reveals quality of life concerns for NZers with intellectual disability

Call for more housing for disabled people

Maxim Institute finds barriers to employment for people with disabilities

New Minister Carmel Sepuloni responds to concerns

New MPs’ maiden speeches on disability

Ombudsman’s report on Ruru Special School

Disabled men lose High Court case

Mothers write book about discrimination against their disabled children

Survey on assistive technology

Outdated term ‘Mongol’ causes offence

Immigration Tribunal overturns Immigration decision on autistic boy

International Disability Day 3 December

Seacliff: remembering our history through musical theatre

2017 Attitude Awards


IHC survey reveals quality of life concerns for NZers with intellectual disability

An IHC survey in July provided valuable insight into the quality of life of New Zealanders with intellectual disabilities. Information was collected through an online survey and focus groups. The survey found many young people and adults are still struggling to get education, good health care, appropriate housing, and to earn money. IHC’s Director of Advocacy, Trish Grant said: “These results are the first of a kind for New Zealand. They give us a new benchmark on just how unnecessarily tough life remains for many people with intellectual disabilities.”

Three-quarters of students with an intellectual disability said they were not given the right support to enter the workforce. Some employers are taking people on for work experience, but it rarely leads to a permanent job. Some stay in unpaid work for many years. They don’t want to risk leaving as that might affect their benefit status or their participation in the community. People also are finding it difficult to access tertiary education.

Approximately 80 percent of respondents felt people with intellectual disabilities and their families do not have enough money for food, clothing, bills and transport – let alone for going out, holidays, celebrations or paying for additional disability costs.

Nearly half of respondents thought that healthcare in New Zealand was making progress for children with intellectual disabilities, but more than half felt it was stalled or worsening for adults. But there were also brighter spots in the results, with some families reporting the new individualised funding model was working for them.

Patchy progress for people with intellectual disabilities Scoop

2017 IHC Survey IHC


Call for more housing for disabled people

The IHC survey also found high levels of concern among parents of intellectually disabled adults regarding housing. Auckland group Disability Connect is calling on the government to ensure a portion of the houses built through the government’s KiwiBuild programme are earmarked for accessible housing. Disability Connect says disabled people are usually not a landlord's first pick, and restrictions on the types of houses needed and a lack of supply, especially in Auckland, were driving more people to apply for social housing. Colleen Brown of Disability Connect says because many disabled people were still living with their parents, they were deemed not to be in a crisis situation. IHC Director of Advocacy, Trish Grant said people with intellectual disabilities needed good support to live independently. She said disability advocates were very interested in the new Government's plans for a housing commission, and she hoped to see the Government partner with more social housing groups to make more independent living possible.

Disabled tenants shut out of market Radio NZ


Maxim Institute finds barriers to employment for people with disabilities

The Maxim Institute (an independent ‘thinktank’) has published a discussion paper on disability and employment in New Zealand and found people with disabilities face significant barriers to finding work. Many employers have incorrect perceptions of the costs of employing a person with disability, the support available to employers, the different abilities of people with disabilities, and the benefits of employing people with disabilities.

The authors identified opportunities for employers, government bodies, and advocacy groups to work together to acknowledge the abilities of all New Zealanders, and take steps to increase participation of people with disabilities in the workforce. They are now working on a policy paper outlining specific recommendations for how each sector of society can make a tangible difference on this issue.

School-leavers with disabilities struggling to find work Radio NZ

Discussion Paper: Acknowledging Ability  Maxim Institute


New Minister Carmel Sepuloni responds

The new Minister for Disability Issues, Hon Carmel Sepuloni, responded to the above Maxim Institute paper saying she is resolved to lift people out of poverty and remove barriers to people with disabilities entering the workforce and accessing suitable housing.

Trish Grant from IHC Advocacy says: “It is great to see the Minister acknowledging the challenge faced by people with disabilities and we look forward to the government taking significant action to break down the barriers that prevent people with disabilities gaining employment and increasing personal income”.

IHC is producing a briefing paper for Minister Sepuloni recommending changes to reduce poverty and increase employment opportunities for people with disabilities. These changes include:

  • increasing benefit levels to ensure people have enough money to enjoy a basic standard of living
  • ensuring the transformation of the disability system results in individual budgets being sufficient to enable a good life and meet support needs
  • ensuring people are properly supported to transition from school to training, study or paid employment
  • fully funding community and vocational services so that people are supported to find and retain jobs in the workplace

IHC encouraged by Minister’s commitment  IHC


New MPs’ maiden speeches on disability

The new MPs elected to parliament in the 2017 general election have now all given their maiden speeches. This is their opportunity to talk for 15 minutes about any topic and most reveal their motivation for getting into politics. Two Labour MPs, Jan Tinetti and Greg O’Connor, mentioned disability issues within their maiden speeches.

Jan Tinetti grew up on the grounds of psychopaedic institution Templeton where her parents worked, and she considered many of the residents her friends. However, it was when she started employment there as a teenager she realised what institutionalisation inside the villas meant: “Even though institutionalisation of people with intellectual disabilities was at the time the societal norm, it was at this time that I realised being the norm didn't always make it right. I began to struggle with the concept that it was OK to hide people away from society solely because of an intellectual disability, and it was here that my passion for social justice developed.” Tinetti became a teacher and was most recently the Principal of a low decile primary school in Tauranga where they couldn’t afford to employ all the support workers they needed.

The new MP for Ōhāriu, Greg O’Connor, had a career in the police including as an undercover detective. But being the father of a disabled son with high support needs gave him a new challenge: “My next venture into a completely unknown world was heralded by the birth of a son with high and complex intellectual disabilities. This was a stark lesson that there will always be those in our society who will be totally dependent on others for their existence and development. I've often described Michael, who joins us in the gallery here today, as being like a blond stallion racing through life, with the family huddled together on his back with no saddle or bridle and, at best, a piece of rope just to keep from falling off. Having to suction and tube-feed him at home between frequent emergency hospital visits did introduce [his parents] to a very new world.”

Jan Tinetti maiden speech Hansard

Greg O'Connor maiden speech Hansard


Ombudsman’s report on Ruru Special School

Chief Ombudsman Peter Boshier has released his Final Opinion on the seclusion of an autistic child at Ruru Specialist School, Invercargill, saying the child and his family were let down by the school and the Ministry of Education. The Chief Ombudsman’s investigation focused on the actions of Ruru School from 2011 to 2014 when the student was on several occasions transported from his satellite classroom to a small corner room at Ruru’s main site. The Ombudsman acknowledged the role of the child’s parents in pursuing their concerns, and said their actions were instrumental in bringing about a new law change banning the use of seclusion rooms in schools.

As part of the government act outlawing seclusion rooms, the Ministry of Education now requires any incidents of restraint of students to be reported. New figures from the Ministry show teachers are having to physically restrain children from hurting themselves or others 130 times a month. More than half of the cases involved children with behavioural issues.

Opinion on Ruru School seclusion complaint Office of the Ombudsman

Trouble in schools Radio New Zealand


Disabled men lose High Court case

Last year the High Court in Wellington heard multiple claims relating to the treatment of three disabled men referred to as Patients X, Y and Z. They had been in care for many years after being originally made special patients under the 1992 Mental Health (Compulsory Assessment and Treatment) Act. The men were suing DHBs and government agencies for their incarceration. All three had learning disabilities, autism and various other conditions. Their lawyer claimed their treatment breached NZ’s Bill of Rights Act having been warehoused for years, neglected and discriminated against, and suffering sexual abuse, seclusion and forced medication.

Last month, the judge presiding over the case released her judgement. She dismissed all the claims and said, “I have not before come across such a devoted group of medical professionals, committed to caring for, and improving the lives of those such as the applicants, often under difficult and dangerous circumstances.”

Having exhausted legal avenues in New Zealand the men could now take their case to the United Nations under the Optional Protocol of the Convention on the Rights of Persons with Disabilities, but that will require significant resources.

No toilets, locked up and forcibly medicated, claims lawyer Stuff

Disabled men received 'dedicated and compassionate care' judge says Stuff

Patients X, Y and Z Access, Public Address


Mothers write book about discrimination against their disabled children

‘Social-Model Mothers: Disability Advocacy and Activism’ is co-authored by seven women about their experiences of disability discrimination. Gretchen Good from Palmerston North is the mother of two disabled children whose children have been stopped from participating in mainstream activities because of their impairments. Another writer compares the discrimination they face to the segregation policies of an earlier era. They want better supports, services and understanding. One would like NZSL taught at all schools so deaf children and adults do not face discrimination. The women felt their voices are often not heard.

Women share stories of discrimination against people with disabilities in new book Stuff


Survey on assistive technology

ACC is seeking feedback into the value that assistive technologies offer disabled people. Assistive technologies are products and related services that help people take part in everyday activities. They can be specifically designed for people with cognitive, sensory, physical, and/or psychosocial impairment or everyday technology that has been modified. Examples range from hearing aids, to smartphone apps that assist with communication, to power wheelchairs. The research is being conducted on behalf of the Disabled People’s Organisations, ACC, and other government agencies, and will examine how assistive technology makes a difference to the lives of disabled people. The survey is open to anyone with a disability.

Seeking feedback on support for disabled people ACC

Disability Action Plan 2014-2018 Office for Disability Issues


Outdated term ‘Mongol’ causes offence

Dr Libby Weaver is a writer on medical and health topics. Unfortunately, in her new book she wrongly uses the outdated word Mongolism when referring to Down Syndrome. The offence caused meant she had to recall copies of the book. The controversy reached a prominent member of the international Mongolian community Uuganaa Ramsay and mother of a son with Down Syndrome who has campaigned against the mis-use of the word "mongol" for many years. She wrote of her surprise that Dr Libby had no idea about the background or history of the word.

When the two meanings of the word 'Mongol' collide Stuff

Author Libby Weaver apologises over 'mongolism' in book BBC


Immigration Tribunal overturns Immigration Decision on autistic boy

In a rare decision favouring a disabled immigrant the Immigration and Protection Tribunal has ruled that Immigration New Zealand made a mistake when it denied an autistic six-year-old boy from Bangladesh residency with his family. Documents showed that while one medical assessor had deemed the child likely to be a financial burden on New Zealand's education system, a paediatrician and a paediatric neurologist who evaluated his disorder after the ruling said the boy was high functioning with no more "significant health needs" than other children his age. The Tribunal’s decision meant that Immigration NZ would have to conduct a fresh assessment taking into account more than one medical assessor's view in determining his eligibility for residency.

Immigration NZ made 'serious error' in denying autistic Bangladeshi boy residency, tribunal rules  Stuff


International Disability Day 3 December

International Day for the Rights of Persons with Disabilities (IDPD) is held every year on 3 December. This year’s theme for the IDPD is “Transformation towards sustainable and resilient society for all.” Activities are taking place around New Zealand and a list of events can be found at Disability Pride Aotearoa’s website.

International Day of Persons with Disabilities, 3 December Office or Disability Issues

2017 Disability Pride Week Events Disability Pride Aotearoa


Seacliff: remembering our history through musical theatre

On 8 December 1942, Ward 5 of Seacliff Lunatic Asylum near Dunedin, burnt down killing 37 of the 39 female patients locked inside. The hospital was built on subsiding land, the structure was wooden with no internal fire prevention, the rooms were locked from the outside and checks by nursing staff were completed only hourly due to the WWII nursing shortage. Seacliff: Demise of Ward 5 tells the story of the women whose lives were so tragically taken. The show revolves around Grace who has been sent to Seacliff following the murder of her young daughter. The creator of the musical, former New Zealand's got talent winner, Renee Maurice, seeks to honour the victims through telling their stories. It premiered in Dunedin and is now coming to Wellington. The musical will be performed at Soundings Theatre, Te Papa, on Saturday 9 and Sunday 10 December, at 10.30am and 2.00pm both days.

Play: Seacliff – Demise of Ward 5 Te Papa


2017 Attitude Awards

Hamish Taverner of People First won the Leadership Award at the 2017 Attitude Awards for his many years of disability advocacy including working with IHC and People First.

Wendy Duff won the Making a Difference Award for helping families across the country access autism services and supports often in times of crisis for many years.

The winner of the Supreme Award was Geneva Hakaraia-Tino who is non-verbal and is working with TalkLink to develop a kiwi accent and te reo for communication devices. Congratulations to all the winners.

The 2017 Attitude Awards  AttitudeLive.com