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New To Disability

Disability can impact anybody at any time. It may be due to complications during the birth of a baby, diagnosed during childhood, acquired after an accident, caused by the natural and inevitable effects of ageing, or the result of illness or medical misadventure.

Navigating the complex system of disability information and services, while managing a stressful turn of events, can be a daunting task.

If you are new to the world of disability, this section provides a starting point. It provides key processes and points of contact (not all the hundreds that exist!) for support, information and resources.

We hope it will help you begin the journey to adapting to your new circumstances.

In New Zealand, different systems apply to different people depending on their age and the cause of their disability.  For this reason, we have divided this section into the following categories:

NEWBORN BABIES, INFANTS AND CHILDREN

ACCIDENT RELATED DISABILITY

AGE RELATED DISABILITY

DISABILITY CAUSED BY ILLNESS OR MEDICAL MISADVENTURE

There are some blurry bits, so it may pay to read more than one category.

Newborn Babies, infants and children

Adapting to the idea that your newborn baby, infant or child has a disability is difficult, but it no longer needs to be a tragedy.  There is a strong community of young disabled people who have spent their life participating in family and community activity on equal terms.  Raising a disabled child won’t be easy, but there is plenty of support and information available.

Advice, Advocacy and Support

It’s important to get good advice, information and support to find out what you need, what you are entitled to and how to get it.  Your family doctor is likely to be able to provide some advice, but it will probably be very general and your doctor may not always be able to keep up to date with changes in the system.

Below is a list of organisations and services that will be able to give you a more informed insight into how the disability sector works and more specific information.

Physical and/or Intellectual Disability

CCS Disability Action is a national organisation with regional services that provide information, advocacy, direct support and connection with other people who can support you to achieve the lifestyle that you and your family want. CCS Disability Action is a good first place of contact to get support, no matter what type of disability you, your child or family member has.

Spectrum Care provides services for children, young people and adults with disabilities and their families. Their services include 24-hour support for people living in residential homes, respite care for adults, specialised Home Support, Behavioural and Aspiration services.

Deaf and Hearing Impairment

The New Zealand Federation for Deaf Children is an incorporated society made up of regional member groups. Their vision is of a future without barriers for every deaf child. They provide family information kits, an assistive equipment subsidy and a freephone helpline providing information about many issues related to childhood deafness.

Blind and Visual Impairment

The Royal New Zealand Foundation for the Blind (RNZFB) provides support for parents of children diagnosed with visual impairment and blindness. Its Child and Family Social Work service (CFSW) focuses on the specific needs of the child within the family, while also addressing the impact on the whole family, from siblings to grandparents.

Dyslexia and Learning Difficulties

Speld nz improves learning outcomes for all children and young people with special educational needs by reducing underachievement in education by students with dyslexia and other specific learning disabilities.

Autism Spectrum

Autism New Zealand Inc. provides support, resources and information on autism spectrum disorders to those with these conditions, their family/whanau, caregivers and professionals working with them.

Parent Support

Parent to Parent has an extensive website that offers information that will connect you with other parents/caregivers. To contact the organisation click on the “Locations and Contacts” link in the left hand menu. There is a section called “Syndromes and Conditions” where you can contact parents in similar circumstances.

Carers NZ also provide practical advice about things such as finances, what is a needs assessment and where to get aids and equipment.

NASC (Needs Assessment and Service Co-ordination)

NASC (Needs Assessment and Service Coordination) agencies provide assessments that allow people under the age of 65 to access services funded by the Ministry of Health.

NASC is often called the “gateway” to non-accident related disability support services and equipment – to access them, you must have a needs assessment.

Find the NASC agency closest to you, contact them and ask for a needs assessment. You can ask your family doctor to refer you, but you don’t need to.

Financial Support

There are a number of benefits and allowances through Work and Income that you may be eligible for if your child has a disability.

You can apply online at

Work and Income Online

or contact Work and income by phone

Individualised Funding

Individualised Funding is new in New Zealand but well-established overseas. It can give families with disabled children more choice, portability, control and flexibility over how, when and who provides their support. Manawanui InCharge provides services to families with children who use individualised funding to manage their support services.  You must have a needs assessment (see above) to access individualised funding.

Education

Mainstream or special education – what’s best? What’s right for your child? The Ministry of Education provides information about getting your child into school if they have impairment and then what to expect once they are at school. There is also a freephone number to call for information that is specific to your child.

Accident-related disability

ACC funds support for people with disability resulting from accident, such as spinal or traumatic brain (head) injury. Contact ACC for information about how to make claims and what support you can expect. ACC covers both short and long-term injuries and provides information in up to 30 languages.

The New Zealand Spinal Trust provides information, education, research, advocacy and support for people who have spinal cord impairment (SCI) so that they may enjoy independence.

Brain Injury New Zealand (BIANZ) represents the regional Brain Injury Associations around New Zealand. These regional associations provide education, advocacy, support and information to any person with a brain injury and their families and carers.

McIsaac Caregiving Agency provides specialised home-based care for spinal and traumatic brain injured persons New Zealand wide

Age-related disability

NASC (Needs Assessment and Service Co-ordination)

If you are over the age of 65 and wish to access publicly funded support services you must have your needs assessed by a District Health Board Needs Assessment Service Coordination (NASC) agency. You can ask your family doctor to refer you, but you don’t need to.

• Note that these agencies are different to those who offer NASC to people under 65.

Home Support

District Health Boards fund Home Support Services and Long-term Residential Care.

The Ministry of Health requires some Asset testing to be done for this.

Work and Income provide extra assistance please see this brochure if you or someone you are caring for has a disability and is over the age of 16 years.

Financial Support

Work and Income provide extra assistance please see this brochure if you or someone you are caring for has a disability and is over the age of 16 years.

Advice, Advocacy and Support

Age Concern New Zealand works to serve the needs of older people by offering nationally contracted services, education, resources and national leadership.

The Age Concern New Zealand website features several articles about disability and ageing.

Alzheimers New Zealand provides support, information and contacts for people with dementia and their carers, family and whānau and community.

Parkinson's New Zealand provides education, information and support for all people with Parkinson's, their caregivers, friends and families.

Disability caused by stroke, illness or medical misadventure

If you become disabled by stroke, illness or medical misadventure support is usually funded through Ministry of Health or District Health Board systems, not ACC.

NASC (Needs Assessment and Service Co-ordination)

To access support, you must have a needs assessment. You can ask your family doctor to refer you, but you don’t need to.

If you are under 65, find the NASC agency closest to you, contact them and ask for a needs assessment.

If you are 65 or over, you must have your needs assessed by a District Health Board Needs Assessment Service Coordination (NASC) agency.

Financial support

Work and Income provide extra assistance please see this brochure if you or someone you are caring for has a disability and is over the age of 16 years.

Advice, advocacy and support

Stroke Foundation of New Zealand Inc provides information and support to people with a stroke, their family/whanau and caregivers. Field Officers and stroke support clubs assist the stroke-affected community. They also provide information through literature, videos and a free helpline.

New Zealand Organisation for Rare Disorders provides New Zealand's central starting point for information about rare diseases.

Motor Neuron Disease Association NZ has a network of branches and support groups throughout New Zealand to assist people with MND, their families and friends in getting the right care and help.

Other Links