Hot Issues May 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 Hot Issues:

  • IHC makes case for strengthened New Zealand Disability Strategy
  • 2016 Budget and disability issues
  • Neurodisabilities Forum exposes unmet need in prisons
  • Social Security Legislation Rewrite Bill provides legal basis for welfare system
  • New Margaret Mahy playground will now be accessible after protests
  • Ministry of Education Special Education Update – questions welcomed
  • Assistance dogs are essential technological support for some disabled people
  • Australian Support Group established for LGBTI people with intellectual disability
  • Feedback sought on residential services


IHC Advocacy makes case for strengthened New Zealand Disability Strategy

The Government, through the Office for Disability Issues, is currently revising the 2001 New Zealand Disability Strategy (NZDS). The Office for Disability Issues held workshops around the country in May to get feedback and also ran an online survey. The NZDS was the first ‘social model’ policy document in New Zealand to be developed with disabled people and the disability community, based on the ‘social model’ of disability which addresses barriers to participation in society for people with impairments. Back then there was an expectation that government departments would use the document to report to Government about progress on removing barriers to inclusion for all disabled people. However, there was no legal accountability.

IHC made a strong and detailed submission to the NZDS revision conversation and also contributed two recent papers relating to people with intellectual disability and their families. The main points of the submission were:

  • That the revised NZDS needed to align with the United Nations Convention on the Rights of Persons with Disabilities (CRPD) which has been ratified by New Zealand since the original NZDS was signed.
  • The underpinnings of the 2001 Disability Strategy must remain the same – that disabled people are able to live valued lives in inclusive communities that recognise and respond to interdependence and diversity.
  • More partnership with government is required and to be meaningful and sustainable the revised strategy needs to recognise that success is dependent on government working in partnership with people with disability, families and whānau, communities and service providers.
  • A monitoring framework is required to track and report on progress towards implementation.

IHC also recommends:

  • That the new Disability Strategy 2016-2026 is linked to government policies, strategies, planning and reporting for all New Zealanders.
  • That the new strategy reflects the critical place of the CRPD Article 12 and addresses the gaps in the 2001 Strategy by aligning the 2016-2026 Disability Strategy with the CRPD.
  • That monitoring of the strategy is undertaken in a partnership with civil society - people with disabilities, families and whānau, communities and non-government organisations.

Two recent IHC Advocacy papers provided additional material to support the submission. ‘Valued, good and ordinary lives’ is a short paper describing the barriers to inclusion for people with intellectual disability and what is needed to break those barriers down. The starting point is always to see the person first and not the label:

‘Our ways of seeing, being with and talking about people with intellectual disability, their families/whānau and communities can open up or close down opportunities and create hope or despair. Different ways of viewing and behaving can impact to build capacity, competence and confidence or give rise to marginalization, helplessness and fear. These are reflected in the expectations we have and the messages we give about how people can and should be able to live their lives; how welcoming and inclusive communities are; ethical, policy and funding decisions that are made; the quality of services and supports provided; and what safeguards are in place’.

Citizenship for everyone that is safe and secure is the aim. The paper outlines and describes the keys to citizenship and the circumstances required.

A second paper ‘What’s important for family wellbeing?’ reports on a recent research project.

‘To help inform our advocacy work we talked with representatives of family-based organisations and parents about their perspectives on family wellbeing for families with children with intellectual disabilities. Four key themes were identified as important for family wellbeing - attitudes, belonging and inclusion, fair systems and being able to plan with confidence and good support and connections. Drawing from these areas we propose some indicators and possible measures for wellbeing for families with children with intellectual disability.

The indicators of wellbeing for families with children and young people with intellectual disability are the same as for all families, but specific additional indicators are required to capture the experience of children with intellectual disability and their families.

We hope the Office for Disability Issues takes our submission and the supporting papers into account. However, a revised Strategy will not be the end of the process. With disability advocacy, inclusion and citizenship there is always more for all of us to do.

IHC feedback: New Zealand Disability Strategy Revision – First phase public consultation IHC Advocacy

Valued, good and ordinary lives IHC Advocacy

What's important for family wellbeing? IHC Advocacy

Revision of the New Zealand Disability Strategy Office for Disability Issues


2016 Budget and disability issues

Sam Murray, CCS Disability Action’s National Policy Coordinator, has been examining the Government’s 2016/2017 Budget for items relevant to disability. Thank you Sam.


Ministry of Health

There is a small decrease in the Ministry of Health’s Disability Support Service funding from $1,167 million (although this was actually an increase over the planned spending of $1,158 million for 2015/16) to $1,165 million. Just one new item of spending, an extra $42.3 million a year of “additional support” for the next four years. I assume this is for growing costs and demand for services. This increase was offset by temporary funding, for a budget blowout last year, ending and some travel settlement money transferring to DHBs as well as a transfer for Enabling Good Lives Waikato to the Ministry of Social Development.


Ministry of Social Development

In the Budget, the Government expects the number of people on the Supported Living Payment, Jobseekers, Sole Parent Support and the Disability Allowance to drop. Jobseekers and Sole Parent Support should drop anyway with the Government’s expectation of falling unemployment. The expected drop in numbers for the Supported Living Payment and Disability Allowance is more interesting, especially with an aging population. On a positive note, it could be the Government is expecting more disabled people to get jobs and earn more. On a negative note, the government could be planning to move people off the Supported Living Payment and/or restrict eligibility to the Payment and the Disability Allowance. The government is expecting numbers on the Child Disability Allowance to rise, which indicates the government expects more disabled children.


Disability Issues Initiatives/Office for Disability Issues

This budget covers the Office for Disability Issues and various, but dwindling, initiatives. Funding for this budget will fall by $1.7 million to $4 million. This is due to funding expiring for Lifetime Design and Enabling Good Lives (although see below).


Community Participation Services (vocational services)

Funding for community participation services will increase to $83.9 million, up from $78.4 million. There is a $1.9 million increase for people on the very high needs scheme. There is also a $3.5 million transfer to Enabling Good Lives Waikato from the Ministry of Health.


Ministry of Education

There is more funding for disabled students on top of the extra funding last year. Total funding for students with disabilities is now $657.9 million a year, up from $637.7 million (a $20.3 million dollar increase). There is an extra $2.1 million for teacher aides, an extra $3.8 million for the Ongoing Resourcing Scheme (actually $6.2 million, once a planned increase from last year’s budget is taken into account), an extra $300,000 for assistive technology and an extra $2.2 million for the Intensive Wraparound Service.’


Neurodisabilities Forum exposes unmet need in prisons

A recent forum in Wellington, organised by the Dyslexia Foundation, heard about the link between undiagnosed neurological disabilities and youth offending. Speakers suggested that if we paid more attention to neurological impairments such as intellectual disability, dyslexia, Foetal Alcohol Spectrum Disorder (FASD), and ADHD, young people might not end up in the courts or jail. It is estimated that 90% of inmates have problems with literacy and 80% aren't good with numbers. Research suggests that although people with neurodisabilities are overrepresented in prisons their conditions are largely invisible and underdiagnosed, according to Principal Youth Court Judge Andrew Becroft, soon to be the new Children’s Commissioner. The concern is that for these young people the system has criminalised a health issue and they should be getting interventions and services not jail sentences. Neurodisabilities require specific interventions. One example is Teina Pora who spent more than 20 years behind bars after being wrongly convicted of rape and murder, but it was later discovered he had FASD.

New Zealand specific data is scarce, but a UK study found people in custody were more likely to have neuro-disorders than in the general population. While 2-4% of the general population has a learning disability, in prison it is up to 32%. Dyslexia jumps from 10% to as high as 57% in prison, and FASD is around 5 percent in public but up to 11.7 percent amongst inmates. A 2012 Welsh study found that while less than 1% of the population has FASD almost 12% of young people in custody had it. Problems can also arise from earlier brain injuries and the study found about 70% of young people in custody had an earlier traumatic brain injury although it is only 31% of the general population. Young people with communication disorders represented 60-90% of those in custody compared to just 5-7% of the general population.

The forum heard about a need for more New Zealand research and more and earlier preventative programmes. Extending the age of those in Youth Court from 17 to 18 was also recommended.

IHC Advocacy and parents and other disability groups have long suggested that lack of appropriate support and interventions at an early age means there is a high risk of young people with a variety of conditions such as autism ending up in the legal system. Is there a role for IHC Advocacy supporting young people with ID, autism, FASD and other impairments through the legal system or who are locked up?

Neurologically disabled overrepresented in prison Newshub

Youth justice age of 17 'enduring stain' on New Zealand's otherwise good record Stuff

Unlocking dyslexia: making good in the youth justice system Dyslexia Foundation


Social Security Legislation Rewrite Bill provides legal basis for welfare system

The Social Security Act is the legislation which outlines the legal requirements for the social welfare system in New Zealand, including the provision of disability benefits. The provision of such social assistance goes back to the start of the welfare state in the 1938 Social Security Act. But the last major revision to the legislation which provides fundamental legal entitlements to social assistance delivered through the benefit system was in the 1964 Social Security Act. Since then the benefit system has changed dramatically. The names of the benefits have changed and entitlements replaced by eligibility requirements. Sections of the Act have had to be updated after each change to legislation, and as a result the Act is fragmented and confusing. The Government has now decided to rewrite and update the whole Act at once so it is easier to follow. A rewrite makes the legislation more coherent and consistent and the language is easier to understand.

The rewritten Bill outlines eligibility and processes for benefits such as Job Seeker and Supported Living as well as the Child Disability Allowance and the (adult) Disability Allowance. The main policy changes in the rewritten Bill are: merging orphans’ benefit and unsupported child’s benefit into a “supported child’s payment”; work obligations for people receiving sole parent support; the emergency benefit is renamed “exceptional circumstances benefit” and will include discretion for MSD to apply work preparation, work obligations and sanctions; power to redirect benefit payments without the beneficiaries’ consent; both parents in a split custody care will be eligible for sole parent support (and subject to work obligations and sanctions). The Bill (Part 9) includes clauses that will create a separate law covering the aged residential care subsidy, moving it into a stand-alone Act to be called the Residential Care and Disability Support Services Act 2016.

This draft Bill is now at a parliamentary select committee and people have until the 22 June to make submissions.

The Social Security Legislation Rewrite Bill Ministry of Social Development

Social Security Legislation Rewrite Bill NZ Parliament


New Margaret Mahy playground will now be accessible after protests

For some reason Christchurch’s new multimillion dollar Margaret Mahy playground was built in a way that made many of the activities and equipment inaccessible to disabled children, particularly those who used wheelchairs. Disabled children could be lifted out of their wheelchairs onto some of the equipment but that is neither realistic nor acceptable for many disabled people, particularly older children and young adults. Some equipment was surrounded by inaccessible bark chips which chairs could not wheel over. These days it is not acceptable for disabled children to merely watch others have fun. Many people were surprised at the lack of understanding about disability access in the design process for such a major project. Christchurch disability support group SmileDial was one group which complained about the situation. The Council says that the playground will now be upgraded with new disability-friendly equipment by September, including wheelchair paths and a special sand-pit area. However, the situation shows that disability advocates need to be constantly vigilant about access even in big public projects.

Margaret Mahy Playground to become accessible for children with disabilities Press


Ministry of Education Special Education Update – questions welcomed

David Wales from the Ministry of Education has sent out a progress report on last year’s Special Education Update consultation project in which many parents and professionals took part. He also refers to the recent CYF Review which signalled changes in the way children under CYFs care access educational support. We urge anyone with any questions or any issues about special education and educational access to take up his offer to contact him directly. He says

‘We want all children to succeed - learners should get the right support when they need it. The Update is looking at how the whole education system can work collectively to achieve this. Our Ministry role includes collaborating and cooperating to make the whole system support better collective efforts and outcomes for learners.

Education sector leaders and educators lead teaching and learning day to day. We want to make sure they’ve got everything they need to ensure every child has the choice and opportunity to be the best they can be. We have been working with many people since January on the high level design for a more fully inclusive education system, including a new approach for providing learning support.

The CYF modernisation changes outlined recently will make a real difference for thousands of children and their whānau. We’ll continue to work closely with other agencies in the months ahead to make this happen.

We will provide high level information to Ministers in July to seek their endorsement of the future approach. Detailed work to test this will continue with our education sector partners and others through to the end of 2016. We are working toward starting national implementation from January 2017.

If you have any questions about the Special Education Update please feel free to call or email me directly - or you can reach us at or on phone 0800 622 222.’

Special Education Update – modernising learning support Ministry of Education


Assistance dogs are essential technological support for some disabled people

Assistance dogs are helping many disabled children and adults access everyday activities. Families of autistic children with an assistance dog report how much the dog helps with anxiety, behaviour and interactions. A photo of an autistic Wellington boy in his hospital bed cuddled by his dog has been viewed thousands of times around the world. In the recent Poppy Day appeal the RSA fundraised for assistance dogs for war veterans with Post Traumatic Stress Disorder and a Christchurch man is the first in line for a dog trained to perform tasks and support him. Assistance Dogs New Zealand is the Trust which trains and matches the dogs to their owners. But these dog companions are very expensive as they need to especially bred and trained and matched for their support role, so considerable fundraising is required often for a long time. There is a case for public funding for these dogs just as there is for other vital technology which helps disabled people participate in society.

Mahe, the autism assistant dog, never leaves his master's side, even in hospital Stuff

'She looked into my soul' - veteran Kiwi soldier hoping for a dog like Rica to help him confront battle nightmares TVNZ

Assistance Dogs New Zealand Trust


Australian Support Group established for LGBTI people with intellectual disability

New Zealand could copy the Australian initiative of support groups for young people with ID who identify as LGBTI (lesbian, gay, bisexual, transgender or intersex). A social group has just been launched in Melbourne to support LGBTI people with an intellectual disability. The group will provide a space for its members to form a supportive social network. The organiser said it is important for sexuality and gender diverse people with an intellectual disability to have a network of friends with similar experiences. The new social group was inspired by a recent story about a mother in Sydney who started a similar group for her son. A recent study by Gay and Lesbian Health Victoria (GLHV) found that 23 per cent of LGBT people are living with a disability in Australia, and report high levels of distress and anxiety. To tackle this problem, a forum on LGBTI people living with disabilities was held in Melbourne at the end of last year. This new support group is one outcome.

Support group established for LGBTI people with intellectual disability Star Observer


Feedback sought on residential services

Research Company Malatest International is asking people living in residential disability support services about their quality of life. The aim of this work is to give people a chance to say what matters to them about their life and their services. Interviewers with disabilities will ask people living in residential services to share their views. They will do interviews in-person in: Wellington, parts of Auckland and Palmerston North in the first half of 2016. The survey will also be available online for people in the rest of the country or who would prefer to respond online.

Malatest is looking for people who want to be interviewers in Auckland and Palmerston North. They are looking for people who: want part-time work; have a disability; can travel independently; enjoy talking to people. If you have any questions, comments, or would like to participate, please contact the Malatest Project Manager by email or phone 0800 002 577