Living with your condition

Help (including financial assistance) may be available to you but it is not always easy to access. This page gives you places to go to directly access practical information, as well as listing some key organisations and groups that may be able to help you work out what you need, how to navigate often complex systems to get what you need, and where to go for help and services. A full list of national support groups can be found on NZORD’s Support Group Directory. Many groups have good newsletters and websites as well as playing an advocacy role.

Much information is now translated into Māori as well as Pacific and Asian languages, including Sign Language. The number of support groups for non-European New Zealanders with health conditions and disabilities and their whānau and families is growing.

General Guides

The guides listed below offer a good place to start. Most guides cover the main support areas and financial assistance available – as well as processes such as the assessments that you have to go through to get help – but in different ways and depths. Some are more up to date than others.

  • Carers’ Guide (last updated 2016)

    This guide outlines the main help available from government agencies if you are supporting a family member or friend who is older, has ill health, a disability, a mental health condition or alcohol or other addiction. It also covers important things like ‘taking care of yourself’ when you are a carer. For a free print copy, phone Carers NZ on 0800 777 797 or email centre@carers.net.nz, or contact Work and Income on 0800 559 009.

  • Your Guide to Disability Support Services (last updated 2014)

    This guide provides general information, services and community support available for people who have a disability and qualify for Ministry of Health (MOH) disability support services (DSS), and their aiga or families. The guide was developed to help Pacific people access services, it’s also a good place to start for others. It covers some newer support services such as Individualised Funding and Supported Living (but not funding for family care as of May 2015). The publication was last updated in English, Samoan, Tongan and Cook Island Māori in 2014, and there is a Sign Language video. It is yet to be updated in other Pacific languages.

  • Disability Support Guide 2015

    This guide has been written for parents of children with recently diagnosed disabilities. It is mainly for parents in Auckland, but it would be helpful for parents living elsewhere as most of the main organisations are national. You can contact Disability Connect for a hard copy in English or Simplified Mandarin.

  • Firstport

    This is comprehensive web information resource for disabled people, their families, whānau, caregivers and health professionals. It provides good information on topics like support services by region and type, travel and transport, advice if you are new to disability, links to financial support, equipment and Māori resources etc. It lists local disability information centres around New Zealand you can visit, and all organisations by region.

Organisations – mainly for parents and carers

  • Carers’ NZ

    Carers’ NZ provides a very wide range of information and support and an informative website for family, whānau, and aiga carers. They provide a good free Family Care magazine and provide practical help on things such as planning for ‘time out’. They have a helpline 0800 777 797.

  • Parent to Parent

    A support and information network mainly of and for parents of children with a disability or health impairment. It has some training programmes for parents, SibSupport NZ for siblings of children with disabilities or health issues, and is a partner in the Altogether Autism network.

  • Disability Connect (formerly Parent and Family Resource Centre Auckland)

    Disability Connect supports families who are raising a child with a disability. It is Auckland-based. It runs regular information seminars, e.g. on welfare guardianship, and has a Community Disability Advisor. The Advisor provides information for and works with families from Asia, India and other places who have children with disabilities, e.g. organising monthly meetings of the Chinese Families Autism Support Group and Indian Families with Children of Special Needs Support Group.

  • Age Concern

    Age Concern offers good information for older people and their families, e.g. on retirement villages, enduring power of attorney (EPA) and dementia.

  • NZORD network of national support groups

Other information sources

  • Special libraries

    CCS Disability Action and IHC have good libraries you can openly access. The Blind Foundation and other disability-specific NGOs will take public inquiries, although full services may be reserved for members. The Ministry of Health’s library has on-line access to its catalogue.

  • NZ Federation of Disability Information Centres

    Most Disability Information Centres have local or regional walk-in resource centres with staff on hand and information and equipment displays as well as free phones. The Independent Living Service (formerly the Disability Resource Centre Auckland) has an Asian Support Line.

  • Vaka Tautua, the National Pacific Disability Information and Support Service, 0800 825 282 (0800 VAKATA)

    Vaka Tautau has coordinators in Auckland, Wellington and Christchurch who can provide information, advice and support in Pacific languages.

  • Consumer medicine information

    A database of links to detailed descriptions of medicines, including what it is used for, how it should be taken and possible side effects. The information is written for consumers by the pharmaceutical manufacturer, following guidelines set by Medsafe, the Medicines Safety Authority. Medsafe also maintains the database of Medicine Datasheets – medicine information for pharmacists and health professionals – containing information on dose forms, strength, indication, contra-indications, etc, for all medicines approved for release in New Zealand.

  • Cochrane

    An international not-for-profit organisation whose aim is to produce up-to-date, accurate information about the effects of healthcare readily available worldwide. It provides two series of information, reviews of clinical trials written for professionals and a separate information site for consumers.

Dealing with grief and loss

Some NZ websites listed above, e.g. Carers’ NZ and Age Concern, also cover this area.

  • Skylight

    Grief loss and counselling and information services for children and young people and their families. Has useful links on grief and dealing with loss for people of all ages.

  • National Association for Grief and Loss

    Supports people and communities to understand grief and loss and its impact on our lives.

  • Disability Allowance

    May cover the cost of some disability-related counselling.

Getting Help

This section mainly covers Health-funded support services for people living at home or in residential care or support services, and the assessments required to get them.

Note:

  1. Special education provides some similar services (e.g. assistive technology and behaviour support) for children and young people while they are at school.
  2. ACC co-ordinates a wide range of treatment and other assistance for people who have been injured, including through medical misadventure (now called treatment injury). The Making a Claim page covers what support you can get, and has links to forms and fact sheets e.g. on treatment injury.
  • Needs assessment and service coordination or care coordination services (NASCs)

    These are your gateway or entry point for many health and disability support services.

    • The Ministry of Health (MOH) contracts NASCs around NZ to assess and work with you to determine packages of supports for eligible people (generally under 65 years of age) with long-term physical, sensory or intellectual/ learning disabilities or a combination of these. People with autism spectrum disorder (ASD or autism) are now also included.
    • MOH also funds equipment and modification services for all age groups (see more below). Assessment is usually by a health professional e.g. an occupational therapist and not the NASC.
    • DHBs provide care coordination services or NASCs for:
    • DHBs also assess the needs and support people with mental illness.
  • Main disability support services

    Depending on who funds and the area – geographical and type of help – there will be some differences across the funders:

    • Home help and personal care (often called home based support) e.g. help with cleaning floors or having a shower
    • Respite care and carer support – respite care is paid out-of-home short-term care that gives the usual full time carer a break, carer support is a subsidy to reimburse some of the costs the full time carer has in getting another person take over their role while they have a break.
    • Residential care and support services. Generally permanent out-of-home care is seen as a last resort by many people. Funding arrangements vary according to age and other factors. See the Carers’ Guide and the Work and Income Residential Support Subsidy and Residential Care Subsidy pages.
  • The MOH funds the following for its client groups:

    • Day services (meaningful activities for disabled adults who cannot work)
    • Supported living (so disabled adults can live independently)
    • Specialised support services such as behaviour support, sensory services, autism spectrum support services, services under the Intellectual Disability Compulsory Care and Rehabilitation Act 2003 (IDCCR)
    • Child Development Services and some Assessment Treatment and Rehabilitation (AT and R) Services (DHBs funds AT and R for older people and those with long-term conditions)
    • Individualised funding to give people the option of managing funding for and arranging some of their own supports
    • Funded family care – the family carer of adults with MOH funding can be paid to care if they meet strict criteria
    • Some other newer services in some places (as of mid-2015 decisions are yet to be made on full roll-outs) such as Choice in Community Living and new ways of working such as Enabling Good Lives (EGL), Local Area Coordination (LAC) and Enhanced Individualised Funding.
  • The MOH funds Equipment and Modification Services (EMS) for people of all ages who are eligible e.g. housing and vehicle modifications, hearing aid assistance and a children’s spectacle subsidy, equipment such as wheelchairs and toilet chairs etc. For more information see Living and participating in your community.

  • Ministry of Health Disability Support Services

  • If you are Deaf, or visually impaired:

  • Work and Income assistance

    Work and Income provides a wide range of financial assistance to those in need. Page 6 and the following pages of the Carers’ Guide summarise the most useful programmes, e.g.

    • Support Living Payment for either full-time carers or those with long-term disabilities
    • Jobseeker Support for people able to work or restricted in their ability to work
    • Community Services Card and High User Card to help with the cost of health care and pharmaceuticals respectively
    • Child Disability Allowance paid to the main carer of a child or young person with a serious disability
    • Disability Allowance paid to the person with a disability or their family member to cover the cost of disability-related costs.

    If you meet criteria, you may have a legal entitlement to support. Contact Work and Income local offices or the national number 0800 559 009 for further information and check out the full list of benefits.

  • Most cities have a Citizens Advice Bureau (CAB) or benefit rights service you can call on if you find you are having problems. Claimants of ACC may have access to weekly payments to cover loss of earnings due to an injury.

Government Action Plans

The government is working on improving things in a number of areas. You may be interested in reading the following:

James