IHC Hot Issues - July 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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People with intellectual disabilities missing from mental health announcement

Lack of secure forensic units for people with intellectual disabilities

Addressing the historic abuse of disabled children in State care

Ageing parents of disabled adults

Grandparents raising grandchildren poorly treated by Work and Income

Cabinet Paper on Disability System Transformation released

Transforming Respite 2017-2022

One child with Down syndrome ordered to leave NZ and another case reconsidered

Stats NZ proposal for disability statistics risks making ID invisible

Ministry apologises for wrong answer on ORS funding

Predictive risk modelling and decile funding

Wellington Forum on Supported Living



People with intellectual disabilities missing from mental health announcement

IHC is questioning why people with intellectual disabilities are invisible in new prison mental health plans recently announced by the Government. IHC’s Director of Advocacy, Trish Grant, says the plans fail to address the fundamental needs of many people in the justice system who have intellectual disabilities such as foetal alcohol spectrum disorder. “Far too often intellectual disability and poor mental health combine, leaving people totally isolated and vulnerable in our prisons,” says Trish. “Despite there being an alternative process for people with intellectual disabilities under the Intellectual Disability (Compulsory Care and Rehabilitation) Act, far too many are ending up in the prison system without adequate ongoing support.” She says that the Supported Living service is a start but it only provides temporary help on release from prison.

People with intellectual disabilities missing from mental health announcement IHC

IHC wants more help for disabled prisoners Radio New Zealand


Lack of secure forensic units for people with intellectual disabilities

In recent months there have been several media stories of young people with autism or intellectual/learning disability who need intensive support at times of crisis. But there have been no appropriate facilities or services for them and some have spent time in police cells. Now problems for those who have committed crimes have also been revealed. Psychiatrists and clinicians have highlighted widespread problems, including assaults and violence, in secure units for intellectually disabled people who have committed crimes. They say under-funding, insufficient beds, lack of access to the care needed, and violence among patients are common.

Senior psychiatrists and psychologists have written to the Ministry of Health on behalf of the district health boards which provide forensic services for people under the Intellectual Disability (Compulsory Care and Rehabilitation) Act. They said there is "a serious and in some areas imminent risk of harm", and a comprehensive independent review of the intellectual disability care sector is needed. In Canterbury, the risk of assaults had been serious enough for doctors to consider closing other mental health inpatient services, to provide back-up in case some staff refused to work because of safety concerns. It is possible that more people will end up in police cells.

Doctors reveal secure units for intellectually disabled in crisis Radio New Zealand

Intellectually disabled patient has lived in mental health unit for more than 10 years New Zealand Herald

Canterbury's intellectually disabled patients could be put in prison cells Stuff


Addressing the historic abuse of disabled children in State care

The Human Rights Commission’s ‘E Kore Ano: Never Again’ campaign advocates for an inquiry into and an apology for decades of historic abuse of children in State care. Many of those abused were disabled children, young people and adults. Earlier this month two petitions were presented to MPs on the grounds of Parliament and people bravely told diverse stories of their abuse in State care. Most of the political parties support an inquiry apart from the National Party.

Retiring Disability Rights Commissioner Paul Gibson has led the call for an inquiry into the abuse of disabled children in State care since he became a Commissioner with responsibility for disability in 2011. The HRC has commissioned a report of personal stories by disabled people of their historic abuse, to be launched before Paul leaves the role at the end of July. The report shows that the abuse was systemic across psychopaedic and psychiatric hospitals, residential schools and foster care and provides compelling evidence for an inquiry. Such an inquiry would also need to provide appropriate supports for disabled people to tell their stories safely.

Truth and reconciliation state abuse survivors right thing do Human Rights Commission

People First NZ in total support of HRC's Never Again-E Kore Ano campaign People First

‘Terrible’ treatment systemic Otago Daily Times


Ageing parents of disabled adults

Many of us who have adult children with intellectual and other disabilities are concerned about what will happen to them when we are no longer around as our children remain dependent on families and services. Who will ensure their wellbeing and be their advocate with Work and Income and other agencies? Other family members might be living overseas or not in position to provide support. These were some of the issues raised in a recent Auckland meeting organised by Disability Connect. Over 90 people heard speakers from the Ministry of Health and other agencies. The meeting was videoed for the many who could not attend or live in other parts of New Zealand. Colleen Brown of Disability Connect was also interviewed on Radio New Zealand about the issues.

What happens when we are not here? Disability Connect. Youtube

Who will speak for her when I can't? Radio New Zealand


Grandparents raising grandchildren poorly treated by Work and Income

Many grandparents are raising their grandchildren including disabled children. They can receive the Unsupported Child Benefit (UCB) if eligible. But a study of more than 800 grandparent care families seeking support has shown that Work and Income is often unhelpful and even obstructive. The Chief Executive of Grandparents Raising Grandchildren Trust says that their large research had identified “massive problems” with their clients accessing the UCB. “Only fifteen percent are told they are entitled to the UCB on first approach, while many others are erroneously told they are not entitled to any support” and some wait years for any assistance. Grandparents report shocked at the state of Work and Income offices, where they are made to stand or sit in line for ages, declare their business in front of “everyone”, have their papers lost, receive conflicting advice, explain their business over and over and often get given incorrect information. Many grandparents comment on the rude attitudes of staff. While a proportion had positive experiences, most were critical of the operation of the offices. Hopefully, this report will lead to improvements in Work and Income.

Experiences of grandparents raising grandchildren in getting income support from work and income offices in New Zealand Kōtuitui: New Zealand Journal of Social Sciences Online 28 June 2017

Grandparent caregivers receive “dreadful” treatment Scoop


Cabinet Paper on Disability System Transformation released 

The Minister for Disability Issues, Nicky Wagner, has released a Cabinet paper about the high-level design for the new disability support system. A Cabinet Paper is the Government’s report of what they intend to do. The design is the result of intensive work over a number of months by a group of disabled people, disability sector representatives and officials.

The new system will include:

  • An information hub with a number of ways to make contact and be contacted;

  • Capability funding for disabled people and whānau to build their skills;

  • A new funding model which reduces assessment and provides opportunities for investment, as well as increasing choice and control;

  • Support to expand peer and whānau networks;

  • An easy to use information collection tool which tracks how things are going for disabled people, whānau, providers and the system;

  • A personal information profile managed by disabled people and whānau;

  • A monitoring approach which reduces compliance and is proportionate to the amount of funding people receive; and

  • National and local governance groups with disabled people and whānau representatives.

Work will now begin on the detailed design, which will roll out first in MidCentral — Palmerston North, Horowhenua, Manawatu, Otaki and Tararua districts from July. There will be more information available in October.

For feedback contact STfeedback@moh.govt.nz.

Cabinet paper, a summary, Frequently Asked Questions and the press release at: http://www.enablinggoodlives.co.nz/system-transformation/.


Transforming Respite 2017-2022

The Ministry of Health spends $61 million annually on disability respite to provide short breaks for carers. But the system is complex and inflexible. The Ministry has now developed a new Respite Strategy, intended to last for the next five years. The report says:

“Respite support needs to be available early, before families/whānau start to feel that they cannot cope. Respite should be age appropriate and a best match for the family/whānau. Respite needs will change throughout the stages of life. Respite is a lifelong investment in the wellbeing of the disabled person and their family/whānau.

The high-level outcomes we seek through this strategy are to ensure that the respite model:

offers choice, control and flexibility about how disabled people and their families/whānau take a break – this includes offering disabled people and their families/whanau; a flexible respite budget that allows them to take breaks in the ways that suit them best;

enhances the range of quality respite options that families/whānau who need them most can access – this includes developing new and expanded respite services, in line with what people want; recognises the value of respite and takes a lifelong approach to respite allocation and funding; is easy to use and to access – this includes easier administration and payment methods, better access to information about the respite options available and support to find and use these options.”

Transforming respite: Disability Support Services Respite Strategy 2017 to 2022 Ministry of Health


One child with Down syndrome ordered to leave NZ and another case reconsidered

As Hot Issues has recently reported, families with a disabled child are regularly denied permanent residency in New Zealand. The Mana-ay family, who have lived in New Zealand for nine years and have a six year old daughter with Down Syndrome who was born here, were recently declined residency and sent back to the Philippines after several appeals were rejected.

However, Immigration officials have been ordered to reconsider their decision not to grant residency to the American mother of a young boy with Down Syndrome. The mother applied for residence in 2016, and included her son on the application. The agency rejected the American woman's application on the grounds her son would become a burden on New Zealand society and need full-time care - despite clear evidence to the contrary. He attends mainstream school with a teacher aide, and the family care for him the rest of the time. But Immigration NZ denied her request, saying her son "was not of an acceptable standard of health". But the woman has successfully appealed that decision through the Immigration and Protection Tribunal. It said the medical assessments were "unfair and inadequate". A different Immigration NZ officer and medical assessor must now consider her case with a "fair and proper reassessment".

Denying immigration to New Zealand on the grounds of disability contradicts our commitment to the UN Convention on the Rights of Persons with Disabilities. But these cases show that the medical assessors making Immigration decisions appear to have little understanding of disability today.

'Serious flaw' in case for deporting boy with Down Syndrome NZ Herald


Stats NZ proposal for disability statistics risks making ID invisible

The UN Convention on the Rights of Persons with Disabilities requires countries to collect disability data. Since 1996 New Zealand has had a specific Disability Survey following the official Census. For the first time since 1996 the Survey will not be held after next year’s Census and the Government is using different ways to collect disability data. However, there is a risk that the questions they are asking do not pick up people with intellectual/learning disability or autism. Statistics New Zealand has outlined new plans in a report called Improving New Zealand disability data. The specific measure they are using to identify disabled people in these surveys and the 2018 Census is known as the Washington Group Short Set (WGSS).Unfortunately, this is a very functional based assessment.

These are the Washington Group Short Set of questions on disability 1. Do you have difficulty seeing, even if wearing glasses? 2. Do you have difficulty hearing, even if using a hearing aid? 3. Do you have difficulty walking or climbing steps? 4. Do you have difficulty remembering or concentrating? 5. Do you have difficulty (with self-care such as) washing all over or dressing? 6. Using your usual (customary) language, do you have difficulty communicating, for example understanding or being understood?

The Response options are a) No – no difficulty b) Yes – some difficulty  c) Yes – a lot of difficulty  d) Cannot do at all.

The Washington Group recommends a threshold that requires people to have at least ‘a lot of difficulty’ with at least one of the activities to be counted as disabled. Many people with intellectual or learning disabilities or autism would reply ‘no’ to all of these questions and would therefore not be considered disabled. This method does not provide any impairment specific data, and will also likely lead to much lower indications of disability in the population. These significant changes have major policy and funding implications for our understanding of disability in New Zealand.

Meanwhile, the 2016 Australian census used a different method to find out the number of disabled people. The census asked whether people ‘require assistance’. This also helps provide data for their National Disability Insurance Scheme. As a consequence they have found 4.4% of children aged 0-19 require assistance for disability, up from the earlier census, More boys and more indigenous Australians are in this category. 562,629 people aged under 65 years were also counted as disabled which is a million more than earlier NDIS estimates.

We need a census that counts people who identify as having an impairment, or as disabled, as well as those who need assistance, to get a fuller picture of disability in New Zealand. A partial picture is not satisfactory.

Improving New Zealand disability data Statistics New Zealand

Census shows increase in children with disability, but even more are still uncounted The Conversation


Ministry apologises for wrong answer on ORS funding

Applying for Ongoing Resourcing Scheme (ORS) funding for children with extra learning needs can be complicated and stressful. It is also very hard to find data about ORS approvals. So it is disappointing that the Ministry of Education gave wrong information in response to a Parliamentary question. Green MP Catherine Delahunty wrote to Education Minister Nikki Kaye in May asking for the approval rates of applications since 2010. The answer was a decline down from 69 per cent in 2010 to 57 per cent in 2015-16 and 55 per cent in the 10 months to April. But when the NZ Herald asked for more information the Ministry said its facts were wrong, and apologised. It now says the actual approval rates for the latest two years were 65 per cent in 2015-16 and 64 per cent in the 11 months to the end of May, producing a broadly flat trend since 2010. It is still concerning that about a third of applications are still rejected.

Green MP Catherine Delahunty said the mistake was alarming. "It's kind of like really, who can we trust?" she said. "Given that the parents have to go through merry hell to get this money out of them, it's a little bit scary that the ministry got their figures wrong, because they expect other people to get it all right.

Education Ministry owns up: 'We gave the wrong answer on special needs students'  NZ Herald


Predictive risk modelling and decile funding

The Ministry of Education is proposing to replace the decile system with a new model based on risk indicators. The NZ Herald has Ministry documents which suggest various categories of children could receive extra education funding rather than the school itself, through a "disadvantage index. The information comes from a Cabinet paper and the proposal is currently under consideration by the Ministry of Education's funding review panel. Unlike decile ratings, which are drawn the socio-economic characteristics of a school's neighbourhood, the new index would use children's individual characteristics to predict their likelihood of school failure.

It found five factors were most predictive: the proportion of time the children were supported by benefits since birth; if the child had a CYF notification; their gender (namely, if they were male); their mother's age at their birth; and their father's offending and sentence history. This would mark a change from a universal approach to school funding to highly targeted funding. Disability is not included as one of the risk factors.

Boys could attract more funding under controversial new model New Zealand Herald


Wellington Forum on Supported Living

Those living in Wellington are invited to a forum on supported living run by the NASC Capital Support and its Consumer Advisory Group. Supported Living helps disabled people aged 17 and over to live independently by providing support in the areas of their life where help is needed. People work out what they need and this is put into a personal plan. Support workers then help with things like shopping, budgeting or cooking; getting out and about in the community; and dealing with agencies such as Work and Income or the bank. The forum will give people with disabilities who receive Disability Support Services, and their families and whanau, information about Supported Living, who can get it, how it works and how to get it. There will be presentations by people who use Supported Living and providers who support these people. All local Supported Living providers have been invited to attend.

Date: Friday 18 August 2017 Time: 10:00am to 12:00pm. Venue: Conference Room in the Education Centre, Kenepuru Hospital, Porirua. RSVP: By 7 August to Nadine Martin via email: capitalsupport@ccdhb.org.nz or phone: 04 230 6404. Numbers limited to 60.