IHC Hot Issues - April 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.

Subscribe here to receive our monthly IHC Hot Issues newsletter via email.


Disability ‘system transformation’

Carers win big pay increase

Changes for IDEA Services

Inclusive Education news

Support for ageing parents worried about the future of their disabled adult children

New Government agency to provide surveillance on vulnerable people

Teenage boy with Down Syndrome held in mental health unit

Claims pregnant women encouraged to terminate Down Syndrome babies

Robert Martin at the United Nations in Geneva

A blood test for Autism?

They work for us election kits


Disability ‘system transformation’

The Government has launched what they refer to as a disability ‘system transformation’. The transformation will be co-designed by a group of people including representatives of the disability sector and Government agencies. The changes will initially focus on those receiving support from Disability Support Services in the Mid-Central region based around Palmerston North. The co-design group includes locals as well as people involved in the Enabling Good Lives (EGL) demonstrations in Christchurch and Waikato. The co-design process is the beginning of a nationwide transformation of the disability support system, based on the EGL vision and principles and new models of assessment and delivery which have been demonstrated in the Bay of Plenty. Cabinet is expected to consider advice on the proposed system design in mid-2017. The Minister of Disability Issues says “Our mission is to give disabled people more opportunities, more choice and greater control over the supports they receive.” However, with individualisation, more control and choice also comes with more responsibility and effort on families and disabled people to make those supports work. There is also less emphasis on group activities so if families want these they are likely going to have to create them themselves.

Disability system transformation group announced  Beehive

Transforming the disability support system Office for Disability Issues


Carers win big pay increase

The big news this month is the pay increase won for about 55,000 care workers, mostly low paid women who work in aged residential care, home support and disability services. Their wages are set by a Government subsidy paid by the Ministry of Health to the employer/provider. The Service and Food Workers' Union, which is now part of the E Tū union, lodged a claim in 2012 on behalf of care worker Kristine Bartlett, with the Employment Relations Authority. The case went through the Employment Court, Court of Appeal and Supreme Court. It claimed that she and other caregivers, male and female, were paid at a low rate because it was work predominantly done by women.

Following legal wins for the workers and further negotiations between unions, government and employers, the Government has now agreed to increase the subsidy paid to providers. The settlement will be implemented over five years and will cost the Government over $500 million a year. The first pay increases will start in July and could see increases from between $3 and $7 an hour, which is significant for those on the minimum wage of $15.75 an hour, although it will not be backdated. Legislation has been introduced into Parliament to start the process and ensure providers pass on the rises to the workers. However, as we have come to expect in the disability sector, things are not always straightforward. Caregivers of disabled people through other systems such as Funded Family Care and Carer Relief are not covered. The draft legislation limits future claims and also proposes to repeal the 1972 Equal Pay Act, which is the basis for this win in the courts.

This settlement is also likely to have flow on effects for other low paid jobs primarily done by women, such as education support workers.

$2 billion pay equity settlement for 55,000 health care workers  Beehive

Big pay rise for women: Deal likely to alarm private sector NZ Herald

Govt settles historic pay equity case Radio New Zealand'

Gordon Campbell on the aged-care settlement Scoop

Two days after the historic proposed settlement for care and support workers, draft equal pay legislation is a disappointment, the PSA says Public Service Association


Changes for IDEA Services

In March, IDEA service users received letters that IDEA (the service provider arm of IHC) would no longer be providing certain programmes. These services are facility based respite, home support, holiday and afterschool programmes, foster care, shared care and contract board. IDEA Services will remain in the services until people can transition to another provider and receive uninterrupted quality services. IDEA will focus on residential, supported living and vocational/day services and consider what needs to be developed to meet people’s changing needs. There will be a transition process identifying and working with the NASCs, Ministry of Health and Ministry of Social Development to find new providers. HealthcareNZ and Spectrum Care have already indicated an interest in home support and respite. Some staff may transition to the new providers or may be offered increased hours in other parts of IDEA Services.

Also ending are the very successful and free Autism family education programmes that IDEA has developed over several years. They are: Growing up with Autism - designed to increase parental knowledge and skill in supporting their adolescent with Autism; ASD Plus – Increasing parental knowledge and skill in supporting their pre-school child with Autism; and Communication & Behaviour – Improving the social, communication and coping skills of children or young people who have ASD. These programmes have already reached more than 3000 families and had a long waiting list, but they have operated at a loss for the last three years and have had to be subsidised by the IHC’s charitable arm. Although the contract expired at the end of March IDEA has continued to provide the programmes till the end of April. Following this they will be picked up by Explore.

IHC head Ralph Jones says: “We are devastated to have not been able to continue with this contract due to the Ministry’s funding constraints and to be criticised [by the Minister] after having propped up this programme with our community raised funds is appalling.”

Despite exiting some services other activities will continue as usual and the IHC Library will continue to send out free books and much needed information and IHC Advocacy will continue to advocate for people’s rights.

IDEA Services says the Associate Health Minister is either unfairly criticising a trusted service provider or is badly misinformed. IHC

IDEA Services – new providers likely for Home Support and Facility-Based Respite IHC

IDEA Services – unable to continue with Autism education and communications programmes for families  IHC


Inclusive Education news

The teacher union NZEI Te Riu Roa is hosting an Inclusive Education Summit in Wellington on 11 and 12 May at the CQ Hotel in Cuba Street which is open to anyone interested in the topic. The summit’s theme is Inclusive Communities through Education and provides an opportunity for educators, disabled people, whānau and advocates to talk about how we can make education inclusive so that all children have a fair chance to learn, explore and grow. The recent Learning Support Update, a freeze on school funding, and increasing pressure on specialist services means that children with additional learning needs appear yet again to be missing out. So how can we make sure resources are there for every child and young person to fulfil their potential, in every educational setting? The summit aims to: Inspire and empower each other to work and take action together; deepen and broaden the relationships between us, as educators, disabled people, whānau and advocates; promote and strengthen the call for the resourcing needed to make education inclusive; and grow understanding and knowledge to support change.

IHC is bringing Professor Roger Slee to be one of the two key note speakers at the summit and to be the guest speaker at IEAG’s AGM on 10 May.

The Ministry of Education has invited stakeholders to a sector forum on 9 May: Building on Success for All. This forum provides an opportunity to have input on the layers of change occurring in Learning Support across New Zealand and in particular the pilot being carried out in the Bay of Plenty. It’s vital that the disability sector and others connected to it take up this opportunity to have oversight on the significant changes occurring.

Registration: Inclusive Communities Through Education Summit


Support for ageing parents worried about the future of their disabled adult children

An Auckland-based group, Disability Connect, has spoken to more than 50 families and says many are tired of fighting for support and are fearful about the future for their adult children with disability once they’re gone. The group's chair is Colleen Brown who is a member of the Auckland District Health Board and has an adult son who has Down Syndrome. Disability Connect is the new name of the organisation formerly known as the Parent and Family Resource Centre which was established in Auckland in the early 1990s as an umbrella organisation to support families raising a child with a disability. The organisation runs seminars and provides other support for parents of disabled children and adults.

Another organisation which provides support to older disabled adults is the Personal Advocacy Trust (PAT). PAT was founded by the IHC in 1967 to meet the concerns of parents worried about who would be there to advocate, support and encourage the independence of their children when they were no longer around. It continues today as an organisation of personal advocates run by a board of trustees and it is independent of any service. It is largely funded by families enrolling a disabled family member.

Last month an Australian documentary asked ageing parents about their decisions for their disabled adult children and showed that in many cases parents had to continue fighting into their old age for their children’s rights. It shouldn’t be so hard. Again the solution is political.

Aging parents struggle caring for disabled children Radio NZ

Disability Connect

The Personal Advocacy Trust

Fighting the system Four Corners, ABC


New government agency to provide surveillance of vulnerable people

Last year the Ministry of Social Development announced that from 1 July this year it would require new personal details from people who were accessing the services it commissioned and contracted out, such as counselling and budget advice. This detailed information includes names, addresses and family information. It is no longer anonymous or confidential. If people do not provide this information they will not be able to access the government subsidised service (but if they pay for the service they will not have to hand over their personal detail). This move is part of the Government’s Social Investment Strategy which aims to identify and provide more resources to so-called vulnerable or at risk people. But it was not clear how this information would be monitored and what pathway there would be to any improvements in their lives. The Privacy Commissioner had significant concerns about collecting the data in this way and all political parties apart from National opposed it.

Now it has been announced that a new government agency called the Social Investment Agency with its own Social Investment Board will be created from 1 July to use the information. The Minister, Hon Amy Adams, says: “The new agency will replace the Social Investment Unit currently operating as part of MSD and will provide robust all-of-government social investment advice about which people we should be investing further in, and in what ways. This includes applying rigorous and evidence-based investment practices to social services. It will also be tasked with building the social investment architecture for all government and NGO agencies to use to help frontline staff fine-tune services and make them better targeted.” The Social Investment Board will be made up of the chief executives of the Ministries of Education, Health, Justice and Social Development, with an independent chair. Such a set up will allow ‘predictive risk modelling’ to identify, name and target at risk children. It is likely that many disabled children, adults and families will be monitored through this new system which will follow people over their life course, potentially creating stigmatisation and victimisation. Those of us in the disability sector should be very cautious of these developments. Or we could fight it.

Changing lives through social investment Scoop

Collection of NGO client data is excessive and disproportionate - Privacy Commissioner Privacy Commissioner


Teenage boy with Down Syndrome held in mental health unit

An intellectually disabled teenager with Down Syndrome is heavily sedated and being held in a mental health unit in Christchurch because the new Oranga Tamariki Ministry cannot find anywhere else for him to go. In a test of the capacity of the new Ministry which has replaced Child, Youth and Family, the Ministries of Health, Education and Oranga Tamariki are trying to find the state ward a suitable long-term home. He has been in various residential settings but they could not cope with his behaviour. However, Children's Commissioner Judge Andrew Becroft has suggested that the boy's treatment breaches the UN Convention on the Rights of the Child which sets out children's rights and governments' responsibilities to fulfil them. The boy will remain at the unit until a new home is found for him but a lawyer who works in human rights says his situation shows up gaps in the system: "Our teens with complex needs all too often end up in residences or psychiatric hospitals when they should be in less restrictive environments."

CYF struggles to find home for violent, intellectually-disabled teen Stuff

Down syndrome boy failed by Child, Youth and Family, say former caregivers  Stuff

Disabled boy held in mental health unit a human rights breach, Children's Commissioner says Stuff


Claims pregnant women encouraged to terminate Down Syndrome babies

Two New Zealand mothers of young children with Down Syndrome claim they were pressured by medical professionals to terminate their pregnancies as the children would be a ‘burden’. Neither did. Both women had pre-natal testing which indicated that their babies would have Downs but they say the result was treated negatively by hospital staff. One of the DHBs concerned is investigating one of the women’s claims and has apologised. The Ministry of Health’s National Screening Unit Clinical Director said the screening process was optional, offered to provide women with more information about their pregnancy. Both women supported screening to better prepare mothers for any health issues their newborn may have.

Mothers of children with Down Syndrome encouraged to terminate Stuff


Robert Martin at the United Nations in Geneva

Last year Robert Martin was elected for a four year term to the United Nations committee which monitors the implementation of the Convention on the Rights of Persons with Disabilities in countries around the world. This month he has been at the committee meeting in Geneva. One of his many contributions to the role is broadening the UN’s thinking about reasonable accommodations. Reasonable accommodations support a disabled person to participate on an equal basis and can include things like allowing more time to look over material or providing a support person. His advocacy for reasonable accommodations, including at the United Nations, will lead the way for other disabled people to represent and be represented within the organisation. More generally it also means appropriate supports to enable disabled people to participate in all aspects of society. Later this year the Committee will begin its second review of New Zealand’s implementation of the Convention.

NZer makes history on UN committee Scoop

Convention on the Rights of Persons with Disabilities Human Rights Commission


A blood test for Autism?

Recently there was an international report that there is now a blood test for Autism which is reportedly 96 per cent accurate The scientists used blood samples from 83 children with Autism and 76 neurotypical children (children without Autism), all between 3 and 10 years old, and were able to use the test to correctly classify 97.6 % of the children with autism and 96.1 % of the neurotypical children. This study raises ethical issues about taking blood from children without good medical reason, and also the potential for the test to be done pre-natally, as a tool to screen for autism.

An academic statistician has questioned what is meant by 96 per cent accuracy. In the study 81 of 83 children on the Autism spectrum and 73 of 76 neurotypical children with no history of behavioural or neurologic difference, were correctly diagnosed. But he says that’s not how the test would be used. “You might be screening the whole population, or screening kids with relatives on the Autism spectrum, or diagnosing kids where ASD is suspected. For whole-population screening, the 3.9% false-positive rate is more of a problem. Based on current US statistics, roughly 1.5% of children are on the Autism spectrum. So, of 1000 kids tested, about 15 would be correctly diagnosed and about 39 would be false positives. Now, it could be that the benefit to the 15 is much larger than the harm to the 39 and the test is worthwhile, but if we were going to have policy discussions about the test in that context, ’96 per cent accuracy’ wouldn’t be a helpful way to describe it.“

Blood test for Autism Radio New Zealand

A blood test for Autism?  Stats Chat


They work for us election kits

With the election only months away it is time to become politically active. We need a strong political focus on issues of disability rights, employment, education, funding and other support for people with intellectual and learning disability and families.

IHC will be hosting an election event where people can ask questions of all political parties. This event will be held on Tuesday 5 September at the TSB Sports arena in Kilbirnie.

The Electoral Commission have produced a DVD and accompanying facilitation guide to encourage people with intellectual disability to vote. They are also producing a new Easy Read booklet which will explain the enrolment and voting process. This resource is intended to have a life beyond this election.

The US-based Autistic Self Advocacy Network has been encouraging its members to become involved in the political process, go to meetings, write letters, use social media and lobby politicians. They have developed a toolkit of civic engagement which is available online. It is specifically targeted at people with disabilities to be their own advocates but the material is useful for anyone wanting to participate in democracy. Although the material is geared to the US political system much of it, such as strategies to get disability voices heard by the people we elect, is useful anywhere. The first toolkit is: They Work For Us: A Self-Advocate’s Guide to Getting Through to your Elected Officials. They are also collecting feedback from self-advocates about their political involvement.

They work for us: a self advocate’s guide to getting through to your elected official Autism Self Advocacy Network