IHC Hot Issues

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:

  • What is going on in Education?
    • Learning support resources to shift from older to younger students
    • Autistic boy expelled from pre-school
    • Communities of Online learning (COOLs)
    • Salisbury School fights closure
  • Autism Spectrum Disorder Guideline updated 
  • What statistical ‘Enduring Questions’ do we need to ask about disability? 
  • High Court hears institutional abuse allegations 
  • Enabling Good Lives evaluation
  • Union to appeal decision that respite care workers are not employees
  • Outdated medical codes in Work and Income forms
  • Quality jobs elusive for beneficiaries
  • Workability International Conference in Auckland 


What is going on in education?


Learning support resources to shift from older to younger students

There were several announcements in education this month that have the potential to profoundly affect children with disabilities. The Education (Update) Amendment Bill, which will make several changes to the 1989 Education Act, was introduced into Parliament. The Minister of Education released Cabinet’s decisions on steps to modernise ‘learning support’ for ‘inclusive education’, which are the new names for ‘special education’. The new terms will come into effect in 2017. The Ministry says: ‘In supporting all learners we're leaving behind terms like "special education" and "special needs", which can accentuate difference and act as a barrier.’

Under the new policy there will be changes to learning support across four key areas:

  • Measuring individual and system performance and improving accountability through a stronger outcomes framework
  • Improving investment decisions with a focus on three priorities:
    • reviewing the Ongoing Resourcing Scheme to ensure the most effective support for students, particularly those between 18 and 21, who are transitioning out of school
    • streamlining Communication Services with a focus on  early intervention 
    • clustering Behaviour Services for greater learning support flexibility
  • Improving and modernising the Ministry’s own specialist services, and
  • Changing Ministry language from ‘special needs’ and ‘special education’, as it can act as a barrier to developing a fully inclusive education system.

The Ministry says: ‘Changes will be transitioned carefully with children at the heart of future support arrangements. No one currently receiving Ministry support will be disadvantaged by any future changes to come.’ The Ministry also released the Cabinet papers and advice provided to the Minister of Education on the Learning Support (previously Special Education) Update.

However, the release of this news caused a lively debate on social media about the implications. It was soon realised that shifting funds to younger children would mean that older students could  risk of missing out on the limited support available now. Parents expressed considerable concern at the prospect of fewer resources for older students. We will all need to closely monitor the implementation of this policy to ensure that students are not worse off.

Learning Support (formerly Special Education) Update and next steps Ministry of Education

Learning Support (previously Special Education) Update information release Ministry of Education

Fears daughter will 'miss out twice' in change to special education funding Stuff

Special-needs funding for children over seven 'slashed' under new govt proposal Stuff

Special ed shakeup: robbing Peter to pay Paul? Radio New Zealand


Autistic boy expelled from pre-school

In earlier news this month a four-year-old non-verbal autistic boy was expelled from a private Auckland pre-school. The boy had done nothing wrong but the pre-school claimed they did not have the funding for the attention he required for behaviour and learning support. However, the Ministry of Education said it had been working with the pre-school and providing resources. The new Ministry of Education policy means that there will be more resources available to support children in pre-schools but it is unclear how they will be accountable for the money and resources, particularly as many early childhood providers are for-profit businesses and not part of the compulsory education sector. The pre-school in this story did have the Ministry helping them support the autistic child, but he was still excluded.

Family in shock after autistic boy's 'humiliating' dismissal from Auckland-preschool Stuff


Communities of Online learning (COOLs)

One of the proposals in the new Education (Update) Amendment Bill is the establishment of Communities of Online Learning (COOLs), which will involve learning by using a computer from the student’s home or another environment. Contracts will be open to a wide a range of potential providers so they could be run like private charter schools but online. Although the Minister says: ‘There will be a rigorous accreditation process alongside ongoing monitoring to ensure quality education is being provided,’ it is not known what accountability they will require for the public funding they get, how familiar they will need to be with the New Zealand curriculum, or what type of assessment will be required. This online learning might provide an option for students who have been excluded from school or who have school phobia. However, the risk is that schools will more readily exclude students with autism, intellectual disability or behavioural issues and the Ministry will just direct families to a COOL of variable quality, rather than ensure the student has access to a mainstream education in a local regular school.

Establishing a regulatory framework for online learning Ministry of Education


Salisbury School fights closure

Salisbury School in Nelson is fighting for its survival as it prepares to celebrate its centenary. The residential school for girls with intellectual disability was established in 1916, but been losing students since the Minister announced she intended to close it and transfer any remaining students to Halswell, a residential school in Christchurch, which will become co-educational. Eligible students can attend a residential school for a maximum of two years, while support for the rest of their schooling years comes from regular Ministry services. 

The Ministry has since established an Intensive Wraparound Service (IWS) for students with significant learning and behaviour issues to support them to stay in their local schools and communities. The problem is that there are far more students applying for this intensive support (which is also for a maximum of two years) than there are resources available. To get accepted into Salisbury girls have to win IWS funding. 

The school has released a legal opinion from law firm Russell McVeagh relating to the Minister of Education’s proposal to close Salisbury, and Halswell College’s application to become co-educational. Salisbury School’s board sought the legal opinion because of serious concerns about the inability of young people with complex intellectual disabilities and autism to access the support they need through the IWS. The legal opinion indicates that the Ministry’s IWS policy could be discriminating against a group of high needs students under the terms of either the New Zealand Bill of Rights Act or the Human Rights Act, or both.

Russell McVeagh Legal Opinion Released: 27th July, 2016  Salisbury School


Autism Spectrum Disorder Guideline updated 

A second edition of the New Zealand Autism Spectrum Disorder Guideline has been published to include the recommendations developed through the ‘living guideline’ process since the original guideline came out.

When the New Zealand Autism Spectrum Disorder Guideline was published in 2008 it was the first comprehensive guideline for autism across the life span in the world. It provided best practice evidence and information for people with autism and their families, for professionals, clinicians and social service agencies. The ministries of Health and Education then established a living guideline process to update the guideline on particular subjects. Supplementary Papers have been published annually on a range of topics including applied behaviour analysis, pharmacological interventions, supported employment, changes in diagnostic criteria in the DSM-5, gastrointestinal issues, social skills groups, and cognitive behaviour therapy. The main recommendations from these updates, as well as the initial recommendations if they still apply, are now available in one new volume. 

The value of the guideline is that it simply and clearly outlines what is best practice. However, it is mainly aspirational as many of the recommendations are still to be implemented. The cover features the winner of the IHC Art Awards 2015, New Zealand, an embroidered map, by Chris Wills.

New Zealand Autism Spectrum Disorder Guideline Ministry of Health

Living Guideline Group: keeping the ASD Guideline up to date Ministry of Health


What statistical ‘Enduring Questions’ do we need to ask about disability? 

The Disability Survey, which follows the five-yearly Census, has now been cut back to every 10 years. The decision was made in 2012 but it has taken a while for the disability sector to find out and react. Last year the Office for Disability Issues established a Disability and Data Evidence Group (DDEG) on statistics and data collection as part of New Zealand’s obligations under Article 31 of the Convention on the Rights of Persons with Disabilities. The group’s plan is to find out what disability information is held in government databases and what gaps there are. 

This DDEG group has representatives from Statistics New Zealand, other government departments, universities, and two people representing the disability community. They have now done a stocktake of what disability data is held in government databases. The next task is to see what gaps there are and if there are other opportunities to compile disability data now the Disability Survey will be less frequent. One way is to ask regular ‘Enduring Questions’ through other surveys done by Statistics New Zealand or other agencies. Enduring questions are those that need to be asked regularly over time to provide statistical insight. The DDEG has now compiled a list of possible ‘Enduring Questions’ which cover topics such as employment, education, health and wellbeing. The document is open for consultation and feedback is sought until 9 September.

Disability Data and Evidence Group Office for Disability Issues

Data-driven disability plan proposed  Beehive


High Court hears institutional abuse allegations 

The month the High Court in Wellington has been hearing the cases of three men with intellectual disability (two also have autism) who have made allegations of injury, restraint, seclusion, over-medication and denial of access to family and possessions. These incidents happened over many years while they were in forensic health facilities, where two still remain. They were all committed as special patients after coming before the courts more than 10 years ago. They are each suing the Government for more than $100,000 for years of ill-treatment. Video interviews with the men were shown to the court but the men did not appear in person. Their case has been taken by human rights lawyer Dr Tony Ellis, who says this case is significant because ‘the rights of the intellectually disabled are rarely, if ever, litigated ... this case becomes important because of that’. The court has heard from psychologists, Ministry of Health staff and others who work in the field. Whatever the outcome, we will have some useful legal information about the rights of people with intellectual disabilities who are detained by the State. Their abusive treatment, if proved, also contravenes Article 14 of the Convention on the Rights of Persons with Disabilities about liberty and security of disabled people.

No toilets, locked up and forcibly medicated claims lawyer Stuff

Intellectually disabled men begin case over alleged mistreatment New Zealand Herald

Patients X, Y and Z Public Address net


Enabling Good Lives evaluation

Enabling Good Lives is a programme that has been running since 2011 in Christchurch and more recently in the Waikato. The Government is seeking feedback about how the Enabling Good Lives approach could be further applied to disability support services. They want ideas from people, providers and communities about how disabled people could be supported to have greater choice and control. The ministries of Health, Education and Social Development want to learn more about the innovative approaches and practices people have developed. This information will be part of the evidence used to develop advice to Government on how to apply the Enabling Good Lives approach. They are interested in how approaches and practices contribute to improving outcomes for disabled people, particularly in relation to wellbeing, social and economic participation, and greater independence.

The Enabling Good Lives principles are: self-determination, beginning early, person-centred, ordinary life outcomes, mainstream first, mana enhancing, easy to use, and relationship-building. A self-review tool has been developed for providers to help them identify their strengths and what they can do to develop further. You can provide feedback until 21 October 2016.

Enabling Good Lives Ministry of Social Development

Self-review tool Enabling Good Lives


Union to appeal decision that Respite Care workers are not employees

Many disabled people or families can apply for a certain number of annual respite days to give their primary carers a break. They find someone to provide that respite and that care worker is paid a maximum of $75 for up to a 24-hour shift, which can be little more than $3 an hour. That is well below the minimum wage and the respite carers are not eligible for other employment conditions such as holiday pay. Currently, there are about 35,000 mainly female respite care workers.

Recently former respite worker Jan Lowe took a case to the Employment Court, which found she was an engaged worker and therefore entitled to the minimum wage and holiday pay. However, following an appeal by the Ministry of Health and the Capital & Coast District Health Board, the Court of Appeal has overturned that ruling. The Court of Appeal found she was not engaged by the Ministry of Health, which pays the respite care subsidy, nor the DHB which assesses patients for respite care eligibility.

E tū, the union representing workers in the disability sector, has decided to challenge that Court of Appeal ruling which reverses an Employment Court decision granting basic employment rights to respite homecare workers. They will now take their appeal to the Supreme Court.

E tū appealing Court of Appeal ruling on respite home care workers E tū


Outdated medical codes in Work and Income forms

Work and Income has an extensive list of names for diseases and medical conditions it calls READ codes. These are for doctors to use when completing medical certificates for people applying for Work and Income benefits. However, it appears that they have not been updated for several decades. Under ‘Mental Health Disorders’ are the outdated, inaccurate and offensive names for autism ‘E140 Infantile Autism’ and intellectual disability ‘E3 Mental Retardation’ There is no code for the autism spectrum or intellectual disability in the list. Apparently there are also some Temporary Read Codes, for example, Asperger Syndrome is Eu845, which is based on the ICD-10's F84.5, but this additional list is not well known to GPs or case managers. We urge Work and Income to urgently update their READ codes to reflect modern understanding about disability conditions. 

READ Codes for medical certificates  Work and Income


Quality jobs elusive for beneficiaries

Current and former beneficiaries were very keen to talk to a Victoria University student researching the experiences of beneficiaries. One said they felt no one else would listen. Alicia Sudden interviewed nearly 250 former and current beneficiaries. She was interested in the experiences of those who had come off a benefit, either temporarily or permanently, since the benefit changes in July 2013. At that time three primary benefits were introduced: Jobseeker Support, Sole Parent Support, and Supported Living Payment and there were new requirements about job-seeking. But of the nearly 250 former and current beneficiaries in her sample, only 37 percent were now employed full-time, 22 percent were employed in part-time, casual or temporary work or were self-employed, 17 percent were studying or training, 21 percent were back on a benefit, and 3.4 percent now had no source of income.

Many of the participants felt the new approach by Work and Income had made it harder to find employment or skills development. There were no longer individual case managers, which meant there was no opportunity to build relationships and understanding of individual needs. The difficulties in finding employment had a negative impact on participants’ wellbeing with a lack of financial support, more stigma and isolation. Even when employment was found there was often still job and financial insecurity.

Beneficiaries say system failing to support them into quality jobs Victoria University


Workability International Conference in Auckland 

Workability International’s Annual Conference this year will take place in New Zealand. The Make it Work conference is being held in Auckland from 26–28 September 2016 and is hosted by IHC. Both IHC and Workability have a commitment to equity in employment for people with disabilities at a community, national and international level. Make it Work highlights the wellbeing and economic benefits for people with disabilities, communities and countries from paid or unpaid work. Yet people with disabilities across the world continue to experience barriers to employment, social and economic exclusion and disadvantage. International and local speakers will talk about examples of successful supported employment, disability perspectives, and wider issues about disability and work. The United Nations Special Rapporteur on Disability, Catalina Devandas Aguilar, is one of the keynote speakers. She will be visiting Wellington in the week before the conference and the Human Rights Commission is organising a series of meetings with government  and other agencies.

Workability international conference IHC