If you have a rare disorder, or you are caring for a person with a rare disorder, you may be entitled to financial assistance from the Government. The type of assistance you can get will depend on the disorder you have and its impact on your life.

The system can be quite difficult to navigate, especially when you have a disorder that is rare. You may not yet have a diagnosis, or your condition may not 'tick the boxes', making accessing support difficult.

Our 2023 survey found two-thirds of respondents did not feel at all informed about social services, nor financial help available.

Even though we had a diagnosis at birth, nobody told us that a child disability allowance was available until he was 2 years old.

Parent of a child with a rare disorder

To help you navigate supports available, we have summarised what you could be entitled to through Work & Income depending on your situation below.


About Work & Income

Work and Income provides financial support if you are on a low income or not working. They also provide help with urgent costs, the cost of housing and some costs involved with raising children such as childcare, depending on your situation. You can find out more about the types of assistance available from Work and Income in this video.

Check what you might get

Work and Income have an online guide called 'check what you might get' that you can use to find out what you may be eligible for. It takes around five minutes to complete. You can access it from the Work and Income website here.

'Check what you might get' is a useful tool that provides information about all the types of financial assistance you may qualify for and why, as well as a list of the types of financial assistance you are unlikely to qualify for and why. 

It is worth noting that people with a physical and/or psychiatric illness can receive disability payments from Work and Income. This is different to Disability Support Services funded by Whaikaha which cannot be accessed for what they call personal health conditions. This means even if you do not qualify for support from Whaikaha, you may be entitled to support from Work and Income. The definition of disability that Work and Income uses is available here.

How to apply for assistance

You can apply for assistance from Work and Income using their online portal, MyMSD, over the phone, or in person at a Work and Income office. Contact details for Work and Income are available here.

Having someone act on your behalf

You can choose to have someone else act on your behalf in your dealings with Work and Income. They call this person an agent. You may be able to verbally agree to have an agent for one meeting, or you can fill out a form to have an agent for longer. There is more information about this on Work and Income's website here

If you disagree with a decision

If you disagree with a decision that Work and Income has made, you can request a review of decision. Further information about this process is available here.


Page contents:

Support that you may be entitled to because you have a rare disorder

  • Supported living Payment
  • Jobseeker Support - Health Condition, Injury or Disability
  • Help entering or staying in paid employment
  • Disability Allowance (children can be eligible for this)
  • Health related travel and accommodation costs
  • Unexpected or sudden costs

Support that you may be entitled to because you are caring for a person with a rare disorder

  • Income if the person you are caring for is an adult
  • Special Disability Allowance (Financial assistance for if your partner or spouse is in long term care or hospital).
  • Income if the person you are caring for is a child
  • Working or studying while being a carer
  • Child Disability Allowance
  • Childcare Subsidy and Oscar Subsidy
  • Caring for someone else's child

If you live with a rare disorder

Income

Supported Living Payment (SLP)

If you are not working or working less than 15 hours a week due to your disorder you may be able to get the Supported Living Payment. To receive this payment you need to meet the eligibility requirements.

Part of these requirements are that you are permanently and severely restricted in your capacity to work.

Permanent is defined as the condition, injury or disability being expected to continue for at least 2 years, or that your life expectancy is less than 2 years.

Severe means you are unable to work 15 hours or more per week.

When applying for this payment, you will need to give Work and Income information that confirms your condition and why it stops you from working. Part of the application includes a medical certificate from your doctor confirming that you expected to be unable to work, or work less than 15 hours, for at least the next two years.

While not necessary, It can be helpful to have a letter from your GP, specialist, physio or other health professional stating your diagnosis and why it means you are not expected to be able to work for more than 15 hours a week for at least the next two years. Providing this additional information may streamline your application and reduce further questions. 

Work and Income can request that you see a doctor of their choosing (that they pay for) for an impartial second opinion. If Work and Income request this, it can be useful to take any specialist letters and diagnostic information about your disorder with you to this appointment. 

Further information about the Supported Living Payment is available from the Work and Income website here

Jobseeker Support - Health condition, injury or disability

If you are not able to work or are only working a little due to a disability or health condition, but you are expected to be able to return to work within two years, you may be eligible for Jobseeker Support. This is a weekly payment that helps people while they are looking for work or can't work right now.

To get Jobseeker Support on the grounds of a health condition, injury or disability, you need to be: 

  • limited in your capacity or unable to work full-time due to a health condition, injury or disability or
  • in employment, but because of a health condition, injury or disability cannot work or can only work at a reduced level.

If you need to reduce your hours or stop work for a while, Work and Income may still be able to help, even if you have a job to go back to.

Further information about Jobseeker Support, including how to apply, is available from the Work and Income website here. Part of the application includes a medical certificate from your doctor that states your medical conditions along with their estimation of your work availability. 


Help entering or staying in paid employment

Work and Income may be able to help if you're disabled or have a health condition and need training or have extra costs to do your job. These should be costs a non-disabled person would not have if they did the same job or training.

Job Support

Funding to help pay for certain things related to your health condition or disability that you need to get a job or stay in a job.

Job Support funding can cover:

  • Equipment: Specialist disability office furniture or adaptive software.
  • Workplace modification: Money to help your employer make your workplace suitable for you.
  • New Zealand Sign Language and other interpreters: To interpret work meetings, documents about your job (e.g. your contract), and interpret some professional development.
  • Support person: Someone you hire to help you at work, such as a reader/writer or driver.
  • Parking: To cover costs of parking during your working hours.
  • Transport: To get to and from your work if you can't access public transport.
  • Productivity allowance: A wage subsidy paid to your employer while you learn skills and set up workplace supports.
  • Job coach: A short-term coach to help you if you start a new job, your job description changes, or you have a change in your disability which affects your job.

Training support 

Funding to help you pay for extra costs relating to training if you have a disability or health condition. This is to help you get or stay in a job, including self-employment.

Training Support funding can cover:

  • Equipment: Specialist disability furniture or adaptive software.
  • New Zealand Sign Language and other interpreters: To interpret classes, presentations and some documents.
  • Support person: Someone you hire to help you with your training, such as a reader/writer or driver.
  • Transport: To get to and from your training course if you can't access public transport.

Further information about Job Support and Training Support is available here.

Mainstream Programmes

If you have a disability or health condition, including a mental health condition or neurodiversity, and you want to work, you can apply to join one of Work and Income's Mainstream programmes. The programmes can help you get into paid work and support you towards getting a long-term job. Further information about Mainstream Programmes is available here.


Help with health and disability related costs

See also: Whaikaha assistanceother financial support.

Disability Allowance

You don't have to be on a benefit to qualify for Disability Allowance, but eligibility does depend on how much you, and your partner if you have one, earn.

Disability Allowance is a weekly or fortnightly payment for people who have regular, ongoing costs because of a disability or health condition, such as visits to the doctor or hospital, or the purchase of medicines, extra clothing or travel. 

To get this payment, you must have a disability or health condition likely to last at least six months, and have regular, ongoing costs because of the disability or health condition that aren’t fully covered by another agency or by another payment you are getting.

Disability Allowance can help pay for a number of things, as long as your doctor agrees that you need it because of your disability or health condition. Examples are:

  • Doctor’s or specialist’s fees
  • travel costs to your doctor, specialist or hospital
  • heating (over and above what is normally used)
  • medical alarms
  • special food costs
  • continence products.
  • counselling related to your disability or health condition.

Further information about the types of costs that Disability Allowance may be paid for is available here

Disability Allowance is paid up to a maximum of $78.60 a week (as at 1 April 2024). How much you get depends on the extra costs you have because of your disability or health condition.

When you apply, make a list of all your expenses related to your medical and/or disability needs for a year (including costs that are yet to happen). When your application is processed, these costs are then used to decide the weekly amount you will get. You'll need to provide proof of your costs so keep all your receipts.

Further information about Disability Allowance and how to apply for it is available on the Work and Income website here. As part of the application you will need your doctor to complete the Disability Certificate that is included in the application form, endorsing the expenses you have listed.

Disability Allowance can be used to pay for a medical alarm or medical alert bracelet. Further information about this is available here and here.

Disability allowance can also be used to pay for counselling related to your disability or health condition. If this is the first time you're applying for counselling, you can get up to 10 sessions. You can apply for more if a health practitioner, eg, your doctor, recommends them. Further information about this is available here.

If the person with a disability or health condition is a child you can apply on their behalf if they are 18 or under and financially dependent on you. You may also be entitled to Child Disability Allowance for the same child, you can receive both at once.

Health related travel and accommodation costs

Work and Income may be able to help with health related travel and accommodation costs for a one-off appointment, e.g. for day surgery or consultations. Further information about eligibility for this assistance and how to apply is available here

See the Other financial support section of our website for other options for assistance with travel costs.  

Dental Treatment

If you're on a low income or benefit, Work and Income may be able to help you pay for immediate and essential dental treatment.

Immediate and essential dental treatment includes treatment such as fillings and extractions, but not periodic cleaning or check-ups.

You can apply for up to $1,000 a year (any 52-week period), to help with immediate and essential dental treatment. You don't have to pay this back. You don't have to be on a benefit to qualify. You can find more information about this on the Work and Income website here.


Unexpected or sudden costs

There are additional forms of assistance from Work and Income that you may be eligible for if you have sudden or unexpected costs, even if these aren't related to your rare disorder. 

Temporary Additional Support (TAS)

Temporary Additional Support helps with essential costs for a short time when you’ve tried everything you can think of, and still cannot pay for them. Further information about Temporary Additional Support is available here

Advance Payment of Benefit

An Advance Payment of Benefit is a one-off payment to help you pay an essential or emergency cost if you can't pay it another way. It may help to cover the cost of things like ambulance subscription fees, dental treatment, school costs, clothing, and furniture. Further information about this is available here.

Special Needs Grants

A Special Needs Grant is a one-off payment to help you pay an essential or emergency cost if you can't pay it another way. It may help to cover the cost of things like a breast pump if you or your baby can't breastfeed because your or the baby have health issues, ambulance fees, medical treatment or equipment, food, and bedding. Further information about Special Needs Grants is available here.


When you are caring for a person with a rare disorder

Income - If the person you are caring for is an adult

If you are caring full-time for someone other than your partner, and the person you are caring for would otherwise need to receive hospital or residential-level care, you may be able to get Supported Living Payment. This is a weekly payment. 

Eligibility for this payment, and how much you receive, depends on how much you and your partner (if you have one) earn.

When applying for this payment, a doctor will need to fill out a medical certificate about the person you’re caring for.

If the person that you are caring for is your partner, you will not be eligible for Supported Living Payment as a carer. However, if your partner receives Supported Living Payment for a health condition,
injury or disability, you may be able to be included in their benefit.

Further information about financial assistance available to carers, like Supported Living Payment, is available from the Work and Income website here.

Special Disability Allowance

This is a weekly payment made to people who have a spouse or partner who is in residential care or has been in a public hospital for over 13 weeks. The payment is for the spouse or partner who is not in care to help with the extra costs of having their spouse or partner in care. To get this payment you need to be receiving a main benefit or superannuation. Further information about Special Disability Allowance is available from Work and Income's website here.


Income - If the person you are caring for is a child

The Supported Living Payment can be paid to a parent who is required to provide full-time care and attention at home, to their dependent child who has a significant disability, and as a result has high care needs.

This is not meant to be paid to parents for children who need only the levels of care required for children typical of their age.

Full-time care and attention is defined as the person requiring 24-hour access to care and attention. This does not mean you are expected to give 24-hour care, but you must be available if required. The level of care and attention must be over and above the ordinary care and attention required by someone of the same age.

As a carer, you can be away from the home for a few hours a day and still be considered to be providing full-time care, so long as you have made sure the person you are caring for is looked after and safe while you are away. You could be away from home for a number of reasons including part-time employment or study.

Working or studying while being a carer

Depending on your circumstances, you can work part-time or study and still receive Supported Living Payment as a Carer. Work and Income may also be able to provide financial help with finding or starting work. Further information about working while being a carer is available from the Work and Income website here

If your time as a carer is coming to an end and you are looking to transition to paid work, Work and Income may be able to help with a Transition to Work Grant. Further information is available here


Help with costs - If the person you are caring for is a child

 Child Disability Allowance (CDA) 

This is a fortnightly payment made to the main carer of a child or young person with a serious disability or health condition.

This payment is for the extra care and attention that you need to give to a disabled child. It is a set amount and doesn't depend on your income, assets or costs. 

To qualify for Child Disability Allowance, the child or young person must need constant care and attention, over and above the ordinary care and attention required by a child or young person of the same age.

Either the child or young person requires:

  • frequent attention from another person in connection with their bodily functions, or
  • substantially more attention and supervision than is normally required by a child of the same age and gender, or
  • regular supervision from another person to avoid substantial danger to themselves or others.

Some examples of the type of disorders that may qualify for Child Disability Allowance can be found on the Work and Income website here

If a child has a terminal illness they are considered to meet the medical qualifications for Child Disability Allowance.

To apply you need to complete the Child Disability Allowance application form. Your child's doctor also needs to complete the medical certificate inside this form. The form tells you what documents you need to provide. The application form and further information about Child Disability Allowance is available from the Work and Income website here.

You may be able to get both the Child Disability Allowance and the Disability Allowance for the same child.

If the child is 16 or older, they may be able to get Supported Living Payment instead of Child Disability Allowance.

Childcare subsidy and OSCAR subsidy

Whether you can get childcare subsidy and/or OSCAR subsidy depends on how much you and your partner earn. The amount you can earn and still receive childcare subsidy and OSCAR subsidy increased a lot on 1 April 2023 so it may be worth checking if you are now able to get it. The income thresholds and rates of subsidy are available here for OSCAR subsidy and here for childcare subsidy.

Childcare Subsidy

Childcare Subsidy is a payment that helps families with the cost of pre-school childcare.

if a child receives Child Disability Allowance (CDA), you are entitled to childcare subsidy up to the age of 6, rather than 5. 

Further information about childcare subsidy is available here

OSCAR subsidy 

Out of School Care and Recreation (OSCAR) Subsidy is a payment which helps families with the costs of before and after school care, and holiday programmes.

To get the OSCAR Subsidy you must be the main carer of a child or young person who is under 14 years old (or under 18 years old if the main carer gets a Child Disability Allowance for them).

Usually, to qualify for the OSCAR subsidy, you and the child's other parent, if they have one, need to be unable to take care of the child or young person because of your own work, study, illness or disability.

However, if a child also receives Child Disability Allowance the parent/s of the child may not need to provide a reason for being unable to take care of the child and/or their siblings during the time they are in out of school care. Further details about this situation can be found here.

Further information about the OSCAR subsidy is available here. 

Child you are caring for is or will be in hospital and you have other children

If you have other dependent children and a child who has been admitted to hospital, you may be entitled to the OSCAR Subsidy for childcare for your other children. This can be paid for up to 20 hours a week during term time and 50 hours a week during the school holidays. You will need to provide a letter from the hospital social worker or treating hospital doctor verifying the child has, or will be, admitted to hospital. Further information is available here.


Caring for someone else's child 

Unsupported Child’s Benefit

This is a weekly payment to help a person supporting a child or young person whose parents can’t care for them because of family circumstances.

To get this payment the child or young person you care for must be 18 years old or younger, single, rely financially on you and not able to be cared for by their parents.

You must be the main carer of the child or young person, and not be their natural or adoptive parent or step-parent. You must also apply for Child Support from the child’s parents to help cover what the government pays you and attend a Family Meeting.

Getting this payment does not depend on how much you and the child you care for earn. Income of the child that you care for that is not from personal earnings, such as from a family trust or ACC, can affect whether you can get this payment and how much you get.

There are a number of additional payments and non-financial supports that you may qualify for. These include an Establishment Grant (when the child first comes into your care), the School and Year Start-Up payment and the Extraordinary Care Fund.

 Orphan’s Benefit

This is a weekly payment to help you if you support a child or young person whose parents have died, can’t be found or can’t look after them because they have a long-term health condition.

To get this payment the child or young person you care for must be 18 years old or younger, single and rely financially on you. You must also be the main carer of the child or young person and not be their natural or adoptive parent.

Getting this payment does not depend on how much you and the child you care for earn. Other money that the child gets, such as from a family trust or ACC, can affect whether you can get this payment and how much you get. 

Information provided on this page has been sourced from the Work and Income Website available here: www.workandincome.govt.nz/

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

Learn more