New Zealand Disability Strategy

This section reports on other leading activity by government agencies that implement the New Zealand Disability Strategy.

Raising awareness

A central objective of the New Zealand Disability Strategy is to encourage and educate for a non-disabling society. Stories can be a persuasive instrument for social change.

“Think Differently” is a social change campaign about changing attitudes and behaviours that limit opportunities for disabled people. It’s about maximising opportunities and focusing on what people can do rather than what they can’t. The Think Differently campaign funds community projects around the country to promote positive attitudes and behaviour towards disabled people. The Ministry of Social Development leads the campaign.

In 2013, the Think Differently campaign encouraged communities to be more inclusive of disabled people, their families and whānau by supporting 23 locally led projects through its “Making a Difference Fund”.

Social change requires long-term investment, but some results are already being shown by Think Differently funded community projects. One highlight was a project by Pact, an organisation that supports people with intellectual disabilities in Otago, Southland and the West Coast. Pact developed Re-Run Theatre, which brings to life examples of breaches of the Code of Health and Disability Services Consumers’ Rights. During the lively shows, audiences have fun pointing out breaches and offering solutions to improve the scene, which is then re-run. Health and disability service clients and staff have attended these shows.

Re-Run Theatre won the Southland Mental Health and Addictions Future Directions Network’s Improvement and Innovation Awards, and the New Zealand Organisation for Quality Spot On trophy for the best opportunity for learning, sharing and growing.

Rights for disabled people

The New Zealand Disability Strategy is about ensuring rights for disabled people. A couple of important rights in the United Nations Convention on the Rights of Persons with Disabilities are accessibility and participation.

Accessible communities

Accessibility is about offering everyone access to society, from physical access to houses, shops and transport, to fair access to work, information, and every other aspect of our world. It is about creating a non-disabling environment.

The recently released “An Accessible City” forms the transport chapter of the Christchurch Central Recovery Plan. The New Zealand Transport Agency, Environment Canterbury and the Christchurch City Council have completed a full implementation plan for this. The Canterbury Earthquake Recovery Authority is responsible for the co-ordination and delivery of the plan’s Anchor Projects.

Living in the community

Many local government bodies and central government agencies have contributed towards supporting disabled people to live in the community.

Local government – district and city councils nationwide are working towards inclusive and non-disabling communities

Local disabled people provided accessibility advice to the Whangarei District Council through its “Disability Advisory Group” on matters of urban design and infrastructure.

Auckland Council held the inaugural “New Zealand Universal Design Conference” in May 2013, together with Lifetime Design Ltd and funding from the “Think Differently Making a Difference Fund”.

Thames Coromandel District Council libraries provided resources in accessible formats, including via large print, talking books, and a home delivery service.

Tauranga City Council adopted its first “Disability Strategy” in September 2013. Its vision is for an inclusive Tauranga where everyone has the opportunity to participate fully in the community.

New Plymouth District Council rolled out its “Let’s Go” project which aims to make the district more accessible for all, including walkways, bridges, and kerbsides.

Kapiti Coast District Council staff undertook disability awareness training, which allows them to take a more proactive and inclusive approach to the needs of all Kapiti Coast residents.

Wellington City Council implemented its “Accessible Wellington Action Plan” to reduce social and physical barriers in Council facilities, services and programmes.

Christchurch City Council established a policy to ensure that all new Council owned social housing units are built to at least minimum Lifetime Design Ltd, to enable occupants to live in their own home, no matter their age, stage, or ability.

Dunedin City Council has been improving its Mobility Parking Scheme, by increasing the number of available parking spaces, making them bigger, and improving inner city pick up and drop off spots for people with physical impairment.

Whangarei District Council’s Disability Advisory Group was established to ensure disabled people’s perspectives are given to the Council. The group also provides opportunities for disabled people to gain more confidence in working with local authorities, as well ensuring the inclusion of disabled people in decisions that affect them

New Plymouth District Council organised a series of tours for the Deaf, blind and others to visit a local art gallery, the Govett Brewster.

Wellington City Council developed a “Neighbours Card” as part of its programme to develop connected neighbourhoods and community resilience. These credit card-sized cards can be stored in wallets with details of immediate neighbours, family and support people recorded for use in a crisis or civil defence emergency. Immediate target groups are disabled people and others with accessibility needs.

Social housing reform

The Ministry of Business, Innovation and Employment has been leading the social housing reform programme, which seeks to ensure that healthy, affordable housing is available for those who are most in need, including disabled people. The Government has been making changes to the housing sector, which will improve the diversity and effectiveness of social housing support. The changes extend income related rent subsidies to eligible community housing providers to create more flexible and innovative solutions to social housing needs, enabling more disabled people to live in the community.

Disability Assist Dog identification tag project

The Ministry of Civil Defence and Emergency Management is part of a working group that has been developing an identification tag system for Disability Assist Dogs. Disability Assist Dogs that are certified under the Dog Control Act 1996 will be eligible for the identification tag. The tag will feature the easily recognisable Civil Defence logo on the front, and information specific to the Disability Assist Dog on the flipside. The objectives of the identification tag are to enable easy identification of a certified Disability Assist Dog, allowing them to remain with their owner/handler at all times, including in a public place such as a Civil Defence Centre, and to speed up the reunification of a certified Disability Assist Dog and their owner/handler should they become separated in an emergency.

Captioned Telephone Service

The Captioned Telephone, or CapTel, works like any other telephone with one important addition: It displays every word the caller says throughout the conversation. CapTel users can listen to the caller and read the written captions in the CapTel phone’s display.

The Ministry of Business, Innovation and Employment launched CapTel in March 2013. Within four months the traffic volume exceeded all other telecommunications relay service types combined. New Zealand was the second country in the world to provide this service.

“I was diagnosed several years ago with mid-frequency hearing loss in both ears.

My husband and I recently set up a boutique lodge in Taupo which requires regular communication with guests and suppliers by email as well as telephone. On the recommendation of a friend I applied for a CapTel phone and have found it invaluable in assisting me with communicating with our customers and other key contacts. I would find it extremely difficult to function without the CapTel device.

Many of our guests are from overseas and have accents and being able to review/refer back to check for accuracy from the transcribed conversation has been most useful to ensure we provide an exceptional experience for our guests.

I would have no hesitancy in recommending CapTel to any hearing impaired person – in fact I have done this several times already.”
– Angie

Creating more inclusive environments with accessible buildings

In November 2013, the Ministry of Business, Innovation and Employment, and the Office of Disability Issues began a review into building access for disabled people. The purpose of the review is to gain a better understanding of how the requirements for people with disabilities contained in the Building Act and the Building Code are being implemented in new buildings, as well as buildings being altered.

The review will assess the extent to which these requirements do in fact provide an accessible built environment for people with disabilities, and if not, whether this is because the regulatory requirements are not well known or understood, or whether the regulatory requirements themselves are inadequate.

The review will consider the availability, content and adequacy of NZS4121, Acceptable Solutions and guidance, and other documents relevant to compliance with the New Zealand Building Code.

National Serious Injury Service

The Accident Compensation Corporation’s National Serious Injury Service is a specialist nationwide unit that works with people who have had a serious injury. It provides support and services to people with lasting impairments after accidents, like spinal and brain injuries, so they can live everyday lives in their communities. As at 30 June 2013, the percentage of clients with a disability that said they were satisfied or very satisfied with the service provided by the Accident Compensation Corporation was 83 per cent, and 88 per cent felt their expectations had been met or exceeded.

In July 2013, the Accident Compensation Corporation launched a website for disabled people and their support people – www.acc.co.nz/disability . Over 1,700 people have visited the site since going live and the website won the Best Plain English Website—Public Sector/NGO category of the 2013 WriteMark Plain English awards.

Taking control of everyday living: about 50 disabled people are helping ACC to develop “Self-management”, a programme where they control the funds for existing supports and services they need every day. It is an innovative approach to funding everyday support services that has been specially designed for people who have disabilities as a result of serious injury. It covers everything from carers and home help to medical supplies, pharmaceuticals, podiatry, equipment maintenance and repairs, sundries such as wheelchair gloves, and replacement equipment items under $1,000. The Accident Compensation Corporation is running the Self-management pilot in the upper and central North Island until July 2014.

Muir spreads his wings with first Self-management purchase: As one of the first Accident Compensation Corporation clients participating in Self-management, Muir reached an important milestone in September. Wellington-based Muir went online and booked a return flight to the Burwood spinal unit in Christchurch. Instead of having Accident Compensation Corporation coordinate this, Muir had control of the purse strings and charged the fare directly to his Self-management account.

“Previously my case manager would have orchestrated those flights for me, forwarding lots of letters and emails. Now, I’ve got my bank card and can do it myself. It’s my responsibility to ensure things like flights are booked. I can also arrange wheelchair taxi transport at the other end,” he says.

A tetraplegic since being injured in a rugby accident in 1975, Muir is relishing the new-found freedom that Self-management has given him. The upshot, he says, is a greater sense of responsibility, control and purpose. The first funds were deposited into Muir’s Self-management account in September and while it’s early days, he describes the Self-management pilot as “encouraging” and is looking forward to making more purchases. “At the moment it’s working really well for me. Organising my own things gives me a sense of purpose. You can do it in your own time and in a relaxed manner. I’m sure that others with serious injury will respond to it very well.”

Health and Disability Welfare reforms

New Zealand has recently transformed its welfare system so it is modernised, active and work-focused. It is a system that identifies and realises individuals’ work capacity, and reduces the overall liability of the benefit system.

An important part of these reforms is the introduction of a new approach to working with people with a health condition or a disability in the benefit system.

The first phase of the new approach was introduced by the Ministry of Social Development in July 2013, which includes:

Simplified access to the Supported Living Payment – to enable disabled people with little or no capacity to work to receive this benefit without any requirement for additional assessments. This applies to those who are totally blind, or those with very little or no work capacity, or whose condition is deteriorating or will not improve, or who are terminally ill.
A series of progressive assessments to determine a person’s ability to work and the supports and services they need to find and stay in work. These include a self-assessment, a structured interview and an external independent assessment of what support is needed to gain and retain work.
A revised medical certification process – which asks General Practitioners to focus on what a person can do at work with appropriate services and supports.
New Mental Health Employment Services – employment services for 1,000 people on Jobseeker Support with mental health conditions, such as stress or depression.
Reduced caseloads for Work and Income Work Focused Case Management – for working with people with a health condition or a disability on Jobseeker Support who have part-time or deferred work obligations.

Initially, the new approach is being targeted towards people on Jobseeker Support with part-time or deferred work obligations, and/or those who have the potential to leave benefit altogether. This directs resources where they are most likely to reduce long-term benefit dependence to manage the negative social outcomes associated with long term benefit receipt, and to better manage the long-term cost of the benefit system.

A longer-term work programme that builds on the first phase of the Health and Disability Welfare Reforms is being developed with stakeholders over the next year. This will be implemented in a phased approach over five years from July 2014.

Examples of what the changes mean

James, a Jobseeker with deferred work obligations – James works at a fast food outlet as a casual employee with no sick leave. After he had an operation to remove his appendix, James needs to be off work for six weeks. James can get Jobseeker Support with no work obligations for the six weeks he is off work. He will get income support over the time he recovers and can keep his job.

Kiri, a Jobseeker with part time work obligations – Kiri is a teacher aide, currently out of work. She has recently had a bad case of tendonitis in her knee and will not be able to do any work that involves being on her feet or moving around a lot. Kiri is eligible for Jobseeker Support and will have part-time work obligations. She will be expected to seek part-time work that she can do while her knee is getting better.

Drew receives Work Focused Case Management – Drew has little work experience, is losing hope and finding it difficult to apply for jobs. Drew has a mental health condition and is referred to Work Focused Case Management for active support to obtain a job. Drew has a clean driver’s licence. Obtaining an HT licence or getting his forklift certificate will give him a marketable skill. This is part of his employment plan.

Isaac receives Supported Living Payment – Isaac is in his mid-thirties and has no work experience. Isaac wants a job. He is interested in the hospitality sector. He has a learning disability and has attended day services since he left school 15 years ago. Isaac has transferred from the Invalid’s Benefit to the Supported Living Payment. He will not have any work obligations and will continue to be eligible to attend day services. Although he won’t get one-on-one support to find work from Work and Income, Isaac can access the general work search services. His day service provider can also support him to find work experience of a part-time job. This may take some training and initial support to get going, but Isaac’s plan should include steps towards realising his ambition to work.

Simone receives Work Search Support – Simone has recently completed NCEA level three courses in client services and contact centre. Simone is a job seeker who may need accommodations or modifications at her place of employment. Simone has muscular dystrophy and uses a walking stick to get around. Work and Income work brokers can help her find a role in her chosen field and liaise with employers and Workbridge over any equipment or accommodations needed to make her workplace fully inclusive and non disabling.

Easier access to public services

As part of cultivating a public service that is aware and responsive to disabled people, various government agencies have been implementing initiatives to create easier access to public services.

The Department of Internal Affairs is the lead agency for achieving the Government’s Better Public Services Result 10 – “New Zealanders can complete their transactions with government easily in a digital environment”. In 2013, the Department of Internal Affairs worked to include disabled people in this goal. This has meant that fully accessible public libraries are increasingly used as community digital hubs, thereby increasing access to digital services.

Also, a pilot programme has been launched in Christchurch whereby multiple public services provide a shared counter service. This front office aims to more clearly understand customer needs, and support them to use digital channels in a fully inclusive manner.

Easier access to government services for Deaf people

Telecommunications services have been introduced this year that make access easier for Deaf, hearing impaired and speech impaired people to access government services. This includes Video Remote Interpreting for connecting a Deaf person to a New Zealand Sign Language interpreter, via an internet video bridge, to enable communication at a face-to-face meeting with a government service worker.

The Video Remote Interpreting service is really helpful for Deaf people in remote areas or where there is a shortage of New Zealand Sign Language interpreters. New Zealand is only one of six countries known to offer this service. The Ministry of Business, Innovation and Employment is administering Video Remote Interpreting on behalf of the participating government agencies: the Ministries of Social Development, Health, and Education, and the Accident Compensation Corporation.

In October 2013, a new Mobile Text Relay service was launched called “NZ Relay”, which provides a communication service for people who are Deaf, hearing impaired, Deafblind or speech impaired.

This service allows text based relay users to access the relay service using a smartphone or tablet where there is mobile phone coverage. Previously, text based users had to use a landline textphone (TTY) or have access to a computer to use Internet Relay. Now Deaf people have the equivalent mobile communications access as other people.

New promotional and educational material has been developed for Deafblind relay users in large font format and in Braille. New Zealand now has the second best relay service in the world after the USA. A feasibility study on the provision of CapTel in Te Reo Māori will be completed by September 2014.

“Nowadays we can do a lot by email and text message, but there are times when a live phone call is necessary. I’ve used the NZ relay service to make urgent work-related calls and to call my doctor and my children’s school. The NZ Relay service gives me greater freedom and independence in my communications.”
– Victoria

Towards a more inclusive justice system

The Ministry of Justice is creating a modern, accessible and people centred justice system. Disabled people gain from the improvements made, such as:

the increased availability of video conferencing links – this helps reduce the need to be physically present in court
the provision of qualified interpreters for users of New Zealand Sign Language.

Inclusive New Zealand Government Web Standards

The New Zealand Government Web Standards, which set requirements for the accessibility of government websites for disabled people, were revised in July 2013. The Department of Internal Affairs worked with disability communities as part of the redevelopment of Government Web Standards. The new Standards set clear requirements to guide the design and development of quality accessible web content.

This plan has a key priority for the rebuild to be fully accessible for all, including public buildings, public places, pathways and roads, parks and playgrounds, and public transport systems. The recent concept design for the Avon River Precinct, an early Anchor Project, included a Barrier Free audit to ensure the needs of disabled people are being well met. Further engagement with the disability sector will be undertaken through ongoing design processes.

Promoting participation of disabled people

In September 2013, the Ministerial Committee agreed to a new way of working and that Disabled People’s Organisations will be involved in updating the Disability Action Plan with government agencies. This plan will be completed in March 2014.

The Ministry of Health has established a number of reference and advisory groups which include people with disabilities and carers. These groups advise the Ministry on development and implementation of initiatives to improve outcomes for disabled people. Disabled people are also frequently represented on procurement panels to participate in the Ministry’s evaluations of potential providers and selection of providers. The Ministry of Health funds disabled people’s participation in these decision-making and advisory groups.

Leadership

The Ministry of Health funds leadership development grants for disabled people through “Te Pou o Te Wahakaaro Nui”. These grants are available to support clear, visionary leadership by disabled people. They help develop leadership skills of disabled people and their family/whānau.

Education

A fundamental objective of the New Zealand Disability Strategy is to provide the best education for disabled people. Whenever possible, this means getting disabled students to go to mainstream schools, just like everyone else. It means that we need to try and make all of our schools inclusive environments so that all children and young people are able to be present, participate, learn and achieve.

As part of this, the Ministry of Education continued to implement “Success for All – Every School, Every Child”, the Government’s vision for all schools to demonstrate inclusive practices by 2014. Success for All’s three main areas of work focus on building confidence in schools to include all students through the development of practical tools and resources; building a web-site to ensure the right information is accessible and of support to classroom teachers; providing targeted support to some schools to support their practice and strengthening schools’ accountability to families and communities.

The Ministry of Education is also working with representatives of the Deaf community, families and whānau and the Deaf Education Centres to implement the recommendations of the Human Rights Commission’s Sign Language Inquiry. Key priorities are children who use New Zealand Sign Language (NZSL) to access the New Zealand Curriculum and parents and whānau of children from 0–3 who are identified as Deaf.

Approximately 96 per cent of children and young people with special education needs attend mainstream schools. As at 30 June 2013, there were over 800 Ministry of Education specialist staff working in schools and early childhood centres to support children and young people with special education needs.

Holly’s story

Holly Ross is 16. She’s one of 1,300 students at Mahurangi College. Holly has cerebral palsy and is non-verbal. She uses a Dynavox, a computer that can be programmed to voice her ideas. School is her favourite place to be.

Holly: “The best things about school are having friends, learning new things and going to different classes. When I learn something new I like to share my work with the other students and teachers.”

Holly’s Mum: “She loves school. She hates school holidays. School holidays are a bore. She’ll do anything to come back here. That’s what schools are there for, they need to incorporate everyone, and they need to make sure that all the kids get to a level where they can grow up and fit into society, and have a good meaningful life.

“The fact that they want these children to learn, they want them to get an academic education to the best of their ability, they’ll look at any methods, any approaches, they’ll consider anything and they’ll take feedback from parents. They’re not a box school, they don’t look at all these kids needing to fit into a box – they’ll make the school work for the kids.”

Holly’s school principal: “Every child is important and every child has value. You have to believe in your heart that every student is important and if that’s the case then that will be reflected in the way that you run the school. Every child is important and every child has value and as a school we have to be careful not to put the emphasis totally on the high achievers. Yes we do celebrate academic success and success in other areas as well, but every child is important and they deserve to feel special and they deserve a really good education.

Mahurangi’s Special Education Needs Coordinator: “We believe that all our students should have the right to be involved in every aspect of our school and so we make sure that we work hard to involve our students.”

Holly’s mum: “This is a school who have never had her in their environment before, she’s non-verbal, she’s in an electric wheelchair, they don’t know how she sleeps, they know nothing about this kid and yet they were quite willing just to go, ‘Yep okay we’ll take her [on school camp] just give us a few pointers,’ and away they went.”

Holly’s English teacher: “We go on school trips and Holly comes. We go on school camps and Holly came. She was out of her wheelchair, she went down the water slide at the campsite we were in, she went on the mudslide – she did absolutely everything.”

Holly’s English teacher: “When Holly first came into the room I was just really uncertain as to how to interact with her and what I could say and do and how much she’d understand, which made it really difficult. To be honest I thought, ‘Goodness me I’ve got a class of children who need help with reading and I’ve got special needs on top of that. How am I going to do this?’ How would I cope with situations where I couldn’t communicate what I was trying to get across to her and how to react when things weren’t going right for her? All those things I just had no knowledge of what to do at that time and yeah it was scary. But getting to know Holly and getting past those visual things that you see to start with – within a term I’d forgotten all that and was just seeing kids for kids. We teach for their individual needs anyway so Holly’s individual needs were really no different – maybe slightly higher than other kids in the room.

“Holly’s one of the most loving young kids that I’ve ever had in my class, an absolute delight to have and I appreciate the fact that for two years I’ve benefited from that relationship with her. I don’t think other people realise how much you get back and how much I learnt in the two years from Holly, which I’ll always appreciate.”

Will’s story

Will is 7 years old and likes all the same things that kids his age enjoy. Will goes to a small school country school in Gisborne with just 13 kids in his class and a teacher with not a lot of experience of children with special needs. Will has cerebral palsy and is non-verbal and has difficulty with fine motor control. School is a place where he feels involved, included and challenged.

Will’s Mum: “Being in a small school every kid – well, not that every kid doesn’t count in a big school but they count a bit more I believe. Every kid needs whatever that kid needs and they’ll pull out all the stops that they can to make sure the every kid gets what they need.

Will’s teacher: “When we knew Will was coming the teacher’s aide and myself went on a course and his mother was using it at home so she would come in every Friday assembly and we would do sign language. Have a little sign language stint at assembly and so the whole school knew sign, knew the simple ones like “toilet”. But as time has gone on I think that his reading has improved, he finger points to every word, he knows every word. And we’re going to focus more on using the computer or his talker to produce his work rather than getting him to laboriously handwrite it because that is a challenge for him so we would rather he get his ideas than have to focus on the writing.”

Will’s Mum: “There were quite a few issues on behaviour and settling in and what’s expected at school and a lot of that was because he knew what he was trying to say but no one else did and when no one understands you…if you haven’t the tools you’ve got to use something else and so the something else would be biting and pushing and crawling over kids and things like that.”

Will’s teacher: “He had a reputation as a wild-child and there was a lot of adjusting for us, myself, him and the children to have Will in the class. Behavior was a huge, huge issue, but as we’ve got more use to the way he speaks and can understand him better than most of that behavior has gone and he doesn’t have it anymore and he doesn’t display that – it’s very, very rare.”

Will’s teacher: “To me inclusive education means making sure that Will isn’t separated in any of the activities that he does, that we have a writing activity and he can still write whether it be with his talker or whether it be with pen and paper on his book – it means he can still achieve the task. In handwriting for instance he was finding it very difficult to write on small lines and so we enlarged the lines and we put it back in the cover of the same book. So looking at the book you wouldn’t notice any difference to any other child but his lines are much bigger

“He is always part of the class and any of his devices we…they are for him obviously and this in particular for him and I use the board for the whole reading group because I feel that what is good for Will is probably going to good for everybody

“I feel quite capable to take any other special needs children on that knowing what I know and having learnt with Will and the other children as well. I feel that we could include any child in our classroom successfully.”

Individualised support systems

The New Zealand Disability Strategy is about creating long-term support systems which are centred on the individual. The Government has been doing this by developing a new model for disability support services, and by implementing its mental health and addiction plan.

Payment to family carers

In May 2013, New Zealand became only the third country in the world after Sweden and the Netherlands, where some family carers can be paid a wage to care for their disabled family member.

New model for supporting disabled people

Disabled people want a good life and more choice and control over support they receive. The Ministry of Health has developed a new model for disability support services. This was done in response to the Social Services Select Committee’s 2008 inquiry into the quality of care and service provision for disabled people. The new model explores different ways of supporting disabled people to achieve their goals and have more choice and control over supports and funding in their everyday lives.

In 2013, the key highlights include:

Information and assistance – Local Area Coordinators walk alongside the disabled person, help them work out what they want from life, help them build community networks. Disabled people identify what represents a good life for them, and the coordinator works with family, community – and where appropriate - government-funded resources to make that happen.
Individualised funding – Individualised funding gives disabled people more choice and control in how they select and manage the community-based disability support services they receive. It is available as a funding option throughout New Zealand. About 1700 disabled people were able to control their own budget and have more flexibility in what they use it for. Enhanced individualised funding is being trialled in the Bay of Plenty, where about 100 disabled people are using their allocated funding to purchase the full range of disability supports, including residential services.
Choice in Community Living has supported 23 people in Auckland and Waikato to make their own arrangements to live in the community rather than in residential services. Choice in Community Living is about opening up opportunities for disabled people and their family to have more choice and control about their living circumstances - where they live, who they live with and how they are supported.
Supported Self-Assessment – As part of the new model, Supported Self-Assessment was offered to disabled people in the Bay of Plenty and their families through their local Needs Assessment and Service Coordination organisation. Supported Self-Assessment means people can do their assessment in their own time, supported by whānau, at a pace that suits them. A new way of deciding how much money should be allocated is also being developed. This new Funding Allocation Tool will be available in the Bay of Plenty in late 2013.

Blake and Ryan’s story

Written by Blake.

My brother Ryan and I have a genetic disorder called Spinal Muscular Atrophy Type II. The condition usually prevents living past the age of six, but my brother and I are now in our early 20s. It was never expected that we would live to this age or that we would live relatively ‘normal’ lives. Instead we went to public schools, had social lives, I had a religious life for a time, we’ve been involved in our community, I’ve had a part-time job, and we both went to university. The only ‘normal’ thing left by this point was to go flatting.

So we did. At the beginning of the year, my brother decided to start looking into our options so that we could continue the ‘normal’ part of our lives. When looking through the funding options, it became very clear that the only way to receive the 24/7 care we required was if we were to live together and share some hours.

So we did. We began searching for houses that could accommodate our needs. This meant room for two wheelchairs, room for equipment such as a hoist and specialty beds, a single-floor design, a landlord who wouldn’t mind small alterations, and space for a disability van. After going through a number of houses with differing levels of required accommodations, a place in Albany was found that appeared to be almost exactly what we needed.

While we were house-hunting, we also had to talk with the powers-that-be about the funding options that were available to us. After being referred to a number of organisations that might meet our needs – namely funding for 24/7 care – we decided to take up options available to us through the Ministry of Health’s Choice in Community Living demonstration and go with Renaissance to support us. The main reason for this was the ability to mould the funding we receive from the Ministry of Health specifically to our needs.

Rather than telling us how much money we would pay for however many hours of care, we were given the flexibility of finding our own independent carers. Renaissance would contract them and have more of an assistant role than that of a director. If my brother or I have any queries in the way in which the funding is used or can be used, they aid us in that capacity.

Furthermore, they are completely transparent with what happens with the funding. Whether it be the funding paid to our carers, the admin costs, or the amount of funding we have in reserve, we are completely in the know. We even have the option of looking at the finances over the internet.

After living in our apartment for going-on five months, Ryan and I have no complaints. Our carers have been paid on time every fortnight, there is complete transparency in relation to our funding and requirements and Renaissance have been completely accommodating. Ryan and I wanted to move out of home with minimal friction, so we did.

The Ministry of Health’s Choice in Community Living is part of its New Model for Supporting Disabled People. It is an alternative to residential services for people with significant disabilities and offers more choice and control over where they live, who they live with and how they are supported. Choice in Community Living is only available in Auckland and Waikato at this time.

Tanya’s story

The New Model for Supporting Disabled People, which the Ministry of Health is currently demonstrating in the Western and Eastern Bay of Plenty, is making a real difference in people’s lives. In this story, Tanya shares her experience of Local Area Coordination, which is part of the New Model demonstration.

Blind since birth, 39-year-old Te Puke resident Tanya was first referred to Local Area Coordinator Larissa Clarke by the Health and Disability Advocacy Service for help in resolving some issues with her support.

As they got to know each other Larissa and Tanya also began talking through the bigger picture of what life was like for Tanya and what she wanted to achieve.

“I was feeling quite isolated,” says Tanya. “I was even considering leaving Te Puke because I was feeling caged. I couldn’t get out very easily to do things. Just being able to talk it all through with Larissa was really good.”

Larissa, who works as a Local Area Coordinator in Te Puke, heard how Tanya wanted to enrol in a course of study and also wished to learn more about Māori culture and history. After they reviewed the options, Tanya decided to enrol with Open Wānanga, the home-based learning school of Te Wānanga o Aotearoa. “I’m loving it,” says Tanya. “It’s all written work and that’s my forte. This study has helped me to work out what my purpose is. I realised what is important for me is people reconnecting with themselves and with their cultures.”

Larissa helped Tanya with the enrolment paperwork and also enabled Tanya to tick off another big – to visit a local marae. Tanya was delighted to have this experience, which she says has given her added motivation to continue her studies with the Open Wānanga.

“Larissa has given me so much confidence – sometimes it’s what you need,” says Tanya, who also plans to attend a whānau concert in Gisborne later this year.

To help Tanya reach her goal of getting out more, Larissa accompanied Tanya to dinner one night at the Te Puke Citizens Club. Tanya has since started going on her own in the club’s courtesy van. “It’s a regular part of my life now and we had the best birthday party there,” says Tanya.

Larissa assisted Tanya to explore flexible funding options for her support and so Tanya is now receiving Enhanced Individualised Funding (EIF) through Manawanui. This has led to more streamlined, simplified support arrangements and Tanya employs a person directly to assist her with shopping, (with Manawanui managing the administration and payroll).

“Previously, my life revolved around the needs of my support, which didn’t always work for me. My life is so much better now, because it revolves around the goals I have for myself. I’m leading the life I want,” says Tanya.

Through Larissa, Tanya has also gained access to a reliable computer, which she is borrowing until such time she can afford to buy a replacement.

When Larissa first met Tanya, many things in her life were not working well. “Now the calls I get from Tanya are all celebration phone calls,” says Larissa.

Local Area Coordination and Enhanced Individualised Funding are available in the Eastern and Western Bay of Plenty, as part of a demonstration of the Ministry of Health’s New Model for Supporting Disabled People.

Yi’s story

Yi lives with her family in a rural village near Te Puke. She shares her story of how Local Area Coordination and Enhanced Individualised Funding have empowered her to live her own life.

Yi has lived with a disability for more than 43 years as a result of contracting polio as a child. She began actively exploring disability funding and support options for herself after being diagnosed with Post-Polio Syndrome (PPS). This is a condition that affects polio survivors years after recovery from the original virus. Yi’s symptoms include muscle weakness and an inability to stand or move without the aid of her crutches or wheelchair.

“I started to get very tired and realised I’d need more help around the house. It is very hard for me to even walk to the shop where we collect our mail. I was also afraid of what might happen if I had a fall at home and there was no-one there to help me.”

Living in a rural community with a young daughter and a husband who works full-time, Yi had encountered difficulties getting support when she needed it. Yi approached Te Puke-based Local Area Coordinator (LAC) Larissa Clarke to discuss her options. With LAC support, Yi successfully applied for Individualised Funding (IF) in December 2012 and then moved to Enhanced Individualised Funding (EIF) in July 2013.

Before IF and EIF, other agencies had managed Yi’s support funds. Now, under EIF, Yi has choice and has opted to employ her own support, manage her own payroll and be in charge of the funding she has been allocated. “I feel secure knowing I have that funding to support me and my life goals. And it has really taken the stress off us as a family. Every fortnight I complete the paperwork for the payroll. Even though I’m still learning about EIF, it’s working very well for me.” (For those who don’t wish to manage their own payroll, Manawanui provides this service, making EIF very easy and convenient for anyone to manage).

Yi says having Larissa working alongside her has enabled her to take control of her life. “Larissa provided me with a lot of information and she encouraged me to attend different meetings to listen to people talk about opportunities to live a life I didn’t think was possible for me. Since last year my life has totally changed and so has my thinking,” Yi says. “I am no longer frustrated and feeling isolated at home. Now I focus on the things I can do and the things I want to achieve. That has been the biggest change in my life.”

Yi now has part-time work and is taking a course in Social Services. She says that through the events of the past year she has realised her passion for supporting and encouraging people with their own challenges, much like her own, and for their voices to be heard and listened to.

Rising to the Challenge: the Mental Health and Addiction Service Development Plan 2012–2017

In November 2012, the Government approved “Rising to the Challenge, the Mental Health and Addiction Service Development Plan 2012–2017”, which seeks to improve mental health and addiction services. The Ministry of Health, mental health and addiction service providers started implementing this plan in 2013. This includes providing parents with resources to increase awareness of how to respond to mental health and addiction issues.

The Triple P – Positive Parenting Programme is currently being trialled in four District Health Boards: Counties Manukau, Waitemata, Bay of Plenty and Mid Central. Seventeen District Health Boards have, or are, actively working to enhance coordination between mental health and addiction and disability support services over 2013–2015.

In 2014, the Ministry of Health plans to carry out a review to further improve coordination between various mental health and addiction services for disabled people.