Travelling with EDS, whether it’s a short or long journey, can have a big impact on our health. We have put together this guide for you which includes nationwide services that you may be eligible for, as well as some handy tips and tricks from EDSer’s around NZ in helping make your journey more comfortable. A downloadable copy of this can be found here.
Nationwide Services To Help You Travel Easier
Mobility Parking Permit
What is the Mobility Parking Permit?
The Mobility Parking Permit allows the holder to park in designated mobility parking spaces around the country. These parks are usually wider and closer to the entrances of shops allowing people with limited mobility greater freedom in going out. The wider parks allow for ease of access in getting in and out of vehicles. There are two types of permits; the Long-Term Permit which is for people with a long-term disability, this permit lasts for 5 years, and the Short-Term Permit which is for people who need mobility help for a temporary condition such as recovering from a hip replacement, this permit lasts for a minimum of 3 months with a maximum of 12 months.
Who Runs The Mobility Parking Permit?
The Mobility Parking Permit is applied to through CCS Disability Action, who work in combination with Waka Kotahi New Zealand Transport Agency, who manage legislation around parking requirements and fines, Local Councils, who monitor on-road parking spaces, and Doctors and GP’s around the country who assess people to determine their eligibility.
Eligibility Criteria
Just having a medical condition or a disability does not automatically entitle you to a mobility parking permit, there is criteria that must be met to be eligible which must be confirmed by your doctor. The criteria is as follows:
- You are unable to walk and always require the use of a wheelchair, or
- Your ability to walk distances is severely restricted by a medical condition or disability. If for example, you require the use of mobility aids, experience severe pain, or breathlessness, or
- You have a medical condition or disability that requires you to have physical contact or close supervision to safely get around and cannot be left unattended. For example, if you experience disorientation, confusion, or severe anxiety.
How Do I Apply?
There is an application form which will need to be filled out by both yourself and one of your doctors which you can download from here. Alternatively you can contact your local CCS branch and they will send you out a form.
There is a fee for the Mobility Parking Permit. This fee differs depending on what type of permit you are applying for, with the 5-Year Permit costing $50. Payment for your Mobility Parking Permit is included in the application.
Once completed, the application is then sent to CCS for processing. This information, along with contact information for CSS is also on the application form.
For more information about the Mobility Parking Permit –
Total Mobility Scheme
What is the Total Mobility Scheme?
The Total Mobility scheme is a provided service throughout New Zealand that subsidises door-to-door transport for all disabled people who cannot independently use regular public transport services, either for all trips, or some trips. The Total Mobility scheme provides users with a 50% discount using selected services, such as taxis, including wheelchair accessible services. This is provided as either an electronic card or a book of vouchers.
Eligibility Criteria
You may be eligible for the Total Mobility Scheme if you have a long-term or permanent disability that stops you from using one or more of the following 5 aspects of a journey by yourself using public transport –
Getting to the place where the transport departs
Getting onto the transport
Riding securely
Getting off the transport
Getting to your final destination point.
How Do I Apply?
Total Mobility is a joint venture between local councils and central government, including Metlink, Auckland Transport and Waka Kotahi NZ Transport Agency. This means you will need to contact a local agency about applying for the Total Mobility Scheme. Waka Kotahi NZ Transport Agency have provided a very detailed brochure which you can find here.
This brochure breaks each region down, with details on who you need to talk to about applying for the Total Mobility service, as well as a list of operators who accept Total Mobility vouchers/cards within each region, their contact details and whether they are wheelchair accessible or not.
As part of the application process you will need to sit through an assessment which takes between 20-30 minutes, and includes the assessor taking a photo of you for printing onto your Total Mobility identification card. You can have the assessment at your own home or at the support agency office.
For more information on the Total Mobility scheme –
Hidden Disabilities Sunflower Initiative
What is the Hidden Disabilities Sunflower?
The Hidden Disabilities Sunflower enables people with non-visible disabilities to access the support they need. It acts as a prompt for someone to choose to let people around them know they have a non-visible disability and that they may need a helping hand, understanding, or simply more time.
Not all disabilities are visible – some are not immediately apparent.
As diverse as these conditions are, so are each person’s access needs and the barriers they face in their daily lives. So some individuals with conditions that are not immediately obvious to others opt to wear the Sunflower to discreetly identify their individual access needs in shops, at work, on transport, or in public spaces.
Making the invisible, visible
When you choose to wear a Sunflower product, you are discretly indicating to people around you that you have a non-visible disability and you may need additional support, help or simply a little more time.
Be a part of the global Sunflower community
Living with an invisible disability can make daily life more demanding but, without visual cues, it can be difficult for others to understand the challenges you might face. The Sunflower helps to open conversations about disability, about the barriers faced and how to remove those barriers. We are creating a space that allows our Sunflower community to come together and connect – the individuals who wear the Sunflower, the individuals who support the Sunflower and the global network of businesses that are Sunflower members – it is a space to be heard and a space to listen through Sunflower Conversations, articles and our invisible disabilities index.
How can wearing the Sunflower benefit you?
You may find that people around you may ask what they can do to assist you, and you can use your Sunflower to tell people who are aware of the Sunflower about your individual access needs.
Do you qualify to wear the Sunflower lanyard?
There is no qualifying list of invisible disabilities. If you have a non-visible disability, you can choose to wear the Sunflower to indicate that you may need additional support, help or simply a little more time. The Sunflower is not a pass to be fast-tracked nor does it entitle you for any other benefit.
Where can you find a Sunflower lanyard?
We feel that it is important that everyone who has a non-visible disability and who would benefit from wearing a Sunflower lanyard is able to access one.
Sunflower lanyards are available free of charge to customers from businesses who are members of the Sunflower and have trained their colleagues to recognise the Sunflower and support those who choose to wear it. Sunflower products are strictly not for resale by individuals or businesses.
Our Sunflower map is where you, our Sunflower wearers can discover where you can shop, travel or be entertained with the Sunflower by your side.
https://www.yourwaykiaroha.nz/learning-information/hidden-disabilities-sunflower/
Where they can be used in New Zealand and around the world:
- Many public travel hubs – airports, train stations & bus terminals
- Most major shopping malls
- Most hospitals
- Some public venues
- The Sudima Hotel group within New Zealand is the first hotel to in the world to join the Sunflower Lanyard Initiative. They are committed to providing fully accessible rooms to the disability community.
The list of places that recognise the Hidden Disability lanyards is growing all the time, if you are unsure if a location utilises the lanyards, contact them directly to find out.
New Zealand Airports currently Supporting the Sunflower Lanyard –
For more information about Airport Sunflower Lanyards being used in New Zealand, please visit the site below.
Countries currently Supporting the Sunflower Lanyard –
- Australia
- Canada/USA
- UK
- Japan
- Denmark
Many countries support the Sunflower Lanyard. Please visit the site below for information on countries and individual airports where you can use a Sunflower Lanyard.
Travel Assistance
Sometimes you may need help paying for traveling to appointments. There are different nationwide programs that can help you with the costs of attending appointments, both locally and nationwide. Some of these services can also help cover the costs of accommodation if you are traveling a fair distance for a medical appointment. Please see below for further information.
National Travel Assistance Scheme
What Is National Travel Assistance?
The National Travel Assistance scheme may be available to you for help in traveling to and from hospital and specialist appointments. This scheme reimburses you for money spent on traveling costs such as petrol, public transport, or flying, even accommodation costs, if you are regularly traveling long distances for health appointments.
Eligibility Criteria
There are many different criteria that need to be met in order to be eligible for this assistance, which includes distance travelled, frequency of travel, what type of appointments you are travelling for, and even where in the country you are located. You can use the Ministry of Health’s National Travel Assistance Eligibility Checker to see if you qualify for this assistance.
Who Runs National Travel Assistance?
The National Travel Assistance scheme is run by the Ministry of Health, there are support staff located at most hospitals who can assess you for eligibility and help you fill out the necessary forms needed. Each time you attend an appointment, you will need fill out the form and have it signed off at the reception of the hospital department you are visiting.
For more information, including Region specific information, please read the Ministry of Health’s page about the National Travel Assistance Scheme.
ACC – Travel and Accommodation
You can request ACC to help with the travel expenses if it is necessary to help you get to the specified kind of rehabilitation and appropriate for your circumstances, such as injury and or distance. You can only get help if they are covering your injury.
Specified kind of rehabilitation
They can reimburse for travel services described on this page when you travel to the following types of rehabilitation:
- Treatment
- Rehabilitation assessment or reassessment
- Obtaining an aid or appliance, or having an aid or appliance fitted
- A programme provided under the training for independence
- In-patient rehabilitation that ACC has approved
- Residential rehabilitation that ACC has approved
- An out-patient rehabilitation programme that the ACC has approved
- A specific programme, service, or course, such as a trial of an employment option or maintenance of pre-incapacity employment, that ACC requires the injured person to attend as part of vocational rehabilitation.
Travel costs they can help with
ACC can help with the expenses of the following non-emergency travel services:
- Private motor vehicle, eg car
- Public transport
- Other travel, eg taxi services
- Air travel
- Accommodation.
- Emergency travel
If you received an invoice for emergency travel service or accommodation, get in touch with ACC. They may be able to help if it was for an injury they cover.
Get prior approval
In case you need taxi services, other travel services, eg hired car or driving companion, or air travel, ACC ask that you talk to them about other services in advance to ensure they’re appropriate for your circumstances. Please give them as much notice as possible. ACC will either organise these services for you with one of their vendors or agree on reimbursement.
Travel by private motor vehicle
A private motor vehicle can be a car, a van or a truck for which you didn’t pay a hire fee to use. ACC will pay 29 cents, GST inclusive, per kilometre travelled by private motor vehicle if your travel meets any of the following criteria:
- You travel more than 20km from the starting point of your journey to the nearest place for rehabilitation within 14 days after the injury date
- The total distance accumulated from all your journeys to rehabilitation is more than 80km within any calendar month.
- Travel by public transport
- Public transport can be a bus, train or ferry if it operates on the ground or water and runs on a schedule.
ACC will reimburse the actual cost you spent traveling by surface public transport, such as bus, train or ferry if your travel meets any of the following criteria:
- You travel more than 20km from the starting point of your journey to the nearest place for rehabilitation within 14 days after the injury date.
- The total distance accumulated from all your journeys to rehabilitation is more than 80km within a one-month period, eg 15 May to 14 June.
- You spend more than $46 on journeys to rehabilitation within any one-month period.
Travel by Other Transport Services
Other transport category includes services such as taxi, water taxi, e-scooters, e-bicycles, hired car or driving companion service.
ACC will reimburse the actual cost you spend traveling by other transport services if they agree in advance that
- it is the best way of getting to your treatment or rehabilitation and
- there are no natural supports available, eg driving family member, walking
- you can’t use public transport because of your injury.
Otherwise, the law requires ACC to pay 29 cents, GST inclusive, per kilometre travelled if your travel meets any of the following criteria:
- You travel more than 20km from the starting point of your journey to the nearest place for rehabilitation within 14 days after the injury date.
- The total distance accumulated from all your journeys to rehabilitation is more than 80km within any calendar month.
- You spend more than $46 on journeys to rehabilitation within any calendar month.
Calendar month
The calendar month is the period from the same date of one month to the same date of the following month.
For example, if you traveled on 21 February 2021, 22 March 2021 and 1 May 2021, ACC would consider the following periods as a ‘calendar month’:
- 21 February 2021 to 20 March 2021
- 22 March 2021 to 21 April 2021
- 1 May 2021 to 31 May 2021.
ACC can consider any travel that falls within one of these periods towards specific travel criteria, ie ‘more than 80km in a calendar month’ criteria.
Air travel
For air travel, ACC must agree in advance that it is the best way of getting to your treatment or rehabilitation because of the long-distance and or your injury. They will either book a flight for you with one of their vendors or reimburse you.
Accommodation
If you can’t get home after your appointment, ACC will contribute $57.55, GST inclusive, per night of accommodation. ACC don’t pay this if you’re staying at the treatment or rehabilitation centre.
If your friends or whānau are traveling with you and sharing accommodation, the rate remains fixed at $57.55, GST inclusive, per night, not per person.
Travel by your friends and whānau
ACC can pay towards your friends and whānau travel expenses if they accompany you on your journey to rehabilitation for any of these reasons:
- The injured person is 18 years or younger
- The medical condition of the injured person requires someone to accompany them
- Travel services provider requires someone to accompany an injured person on their journey
ACC can pay towards your friends and whānau travel expenses if they visit you while you’re receiving rehabilitation for any of these reasons:
- The injured person is 18 years or younger
- Your friends and whānau have to make a single journey that is more than 80km in one direction, eg they have to drive from Hamilton to Auckland, which is 121km
- The injured person is receiving in-patient rehabilitation or residential rehabilitation
Depending on what travel service your friends and whānau use, they must also meet the criteria outlined for travel by that service. This includes obtaining prior approval for the services outlined in ‘Get prior approval’ section. If your friends and whānau travel in a private motor vehicle, ie a car, with you, ACC will only pay one person in this instance – yourself or your friends/whānau.
Applying for reimbursement of travel expenses
Log in to MyACC and go to the ‘Get Support’ page to create an application under ‘Private Motor Vehicle Reimbursement’. If you’re not currently registered for MyACC, register now.
Alternatively complete the ACC250 form and provide necessary supporting information, such as verification from providers and receipts. You’ll find more information in the ACC250 form.
ACC250 Request for travel reimbursement (DOCX 143 KB)
ACC250 Request for travel reimbursement (PDF 211 KB)
ACC will assess your request and notify you of our decision. It can take us up to 21 days to make a decision.
If we have your mobile phone and email verified, you will receive an SMS or email notification as soon as they have made a decision. Otherwise, they will send you a letter in the post.
Contact ACC
If you want to verify your contact details, have any problems or want to know more about how we can help, contact our claims team:
Phone 0800 101 996 (Monday to Friday, 8am to 6pm)
Email claims@acc.co.nz
For more information about how ACC can help you, please visit their website – https://www.acc.co.nz/im-injured/types-of-ongoing-support/travel-accommodation/
MSD Travel & Accommodation
Who can get help from MSD for travel and accommodation
MSD may be able help if you:
- are 16 or over (if you’re 16-19 and have a Youth Service provider, contact Youth Services)
- are a New Zealand citizen or permanent resident
- normally live in New Zealand and intend to stay here
- have an immediate and essential need
- are referred to a hospital or other health service for medical treatment, assessments or services by a registered health practitioner
- are not receiving help for that travel or accommodation cost:
- from a Health Agency
- under the National Travel Assistance Scheme
- from a Disability Allowance.
- MSD can only help with travel costs if they are for a one-off appointment, eg day surgery or consultations.
If your travel or accommodation cost is covered by ACC, MSD may still be able to help. Talk to MSD about your situation.
It also depends on:
- how much you and your partner earn
- any money or assets you and your partner have.
More info about income & asset can be found here under the “Who can get it” tab
What you can get from MSD
MSD generally pay up to $300 in a year. But it depends on your situation.
MSD can pay for actual and reasonable:
- travel costs for a return journey of at least 8 kms to the place of treatment, assessment or services
- accommodation and meal costs if you need to stay away from home overnight to attend the treatment, assessment or services.
How to apply
You need to call MSD on 0800 559 009
MSD book you an appointment to come in and see us and let you know what you need to bring.
For more information about how MSD can help cover travel and accommodation costs please visit their website – https://www.workandincome.govt.nz/eligibility/health-and-disability/travel-costs.html
Transport Services
If you’re unable to get yourself to appointments, there are services across the country that can help you. Please see below for transport services you may be eligible to use.
Hato Hone St John Health shuttles
The service is staffed by trained St John volunteers. It helps people get to their GP, dentist, specialist, or day surgery appointments. Some shuttle vehicles are fitted with hoists to help passengers who have restricted mobility. Like all St John community services, the Health Shuttle exists to keep individuals and our communities as healthy as possible.
Is there a Health Shuttle service near me?
There are over 50 services around New Zealand, and St John would like to run more of them in places where they are most needed. You can find a list of shuttles here.
What times do they operate?
It depends on what each community needs, and how many volunteers are available. Most shuttle services run during weekdays, but some operate on Saturday too. You can look up times here.
Who pays for the service?
Voluntary koha from clients, and the generosity of people and organisations in the community who donate to St John. St John receive funding from National Transport Assistance (NTA) for eligible clients, and also transport for Accident Compensation Corporation (ACC). Their fleet of over 80 vehicles is fueled, maintained and kept up to date from the generosity of their clients and the communities they serve.
Are there plans to run more Health Shuttle services?
They try to respond to the needs of each community, and yes they do have plans to run more health Shuttle services. As the services are delivered by local volunteers, local support is key to being able to help more New Zealanders via the Health Shuttle service.
Driving Miss Daisy
Driving Miss Daisy are a safe, friendly and reliable companion driving service offers independence and peace of mind.
Their nationwide companion driving service offers much more than just transportation. We’ll drive you to and from your destination and provide further assistance as needed.
Driving Miss Daisy tailors their service to meet your needs.
Driving Miss Daisy hold the ACC contract for companion driving services throughout New Zealand. Total Mobility Scheme cards accepted, offering discounts in most regions across New Zealand.
For more information about Driving Miss Daisy, and to find out if they operate in your area, please visit their website – https://drivingmissdaisy.co.nz/
Travel Advice
Flying
There is no indication against being on an aeroplane with a diagnosis of EDS, but it is worth considering the risk associated with long haul flights. If a medical emergency were to happen mid-flight there would be a considerable delay before any medical assistance would be available.
Assisted Travel
Book special assistance at the airport for your outbound and inbound journey. Most airports provide this service and a patient diagnosed with EDS is no exception. Special assistance is also provided by most train operators including wheelchair ramps.
Please note: It is advisable to check with your operator/airport and book in advance.
Travel Plans
We recommend planning for your vacation, making travel plans will not only help to ensure your safety, it will also ensure you maximise your time away so you can enjoy your break.
- Where is the nearest hospital with emergency care?
- Wear your MedicAlert bracelet if you have one.
- Purchase travel insurance.
- Communicate with travel providers before departure to find out what extra support they can give.
- Communicate with accommodation providers so you know what facilities are available, can request a room location that might be easier (floor access etc).
- Most importantly, make memories which will last a lifetime!
Travel Insurance
Travel Insurance is essential and should not cost you significantly more because of a diagnosis of EDS. It is well worth shopping around and visiting comparison websites to get the best package at the right premium.
Medications
Have a letter from your GP itemising all of your medication (prescription & over the counter), have all of these medications in your carry on in a clear bag, take enough for the length of your trip + some extra incase of delays, you will need to show all your medications at both departure and arrival of each country so prepare for this (be friendly and nice, customs will sometimes just wave you through if they see you have your medications bag and letter ready to show them).
Other tips for flying
If you can, try to start a conversation with the flight attendants. These are the people who are there to help you during your flight, and they are the best people to get on your side. Be friendly and kind with them, for passengers they like they will provide extra pillows and blankets – Don’t be afraid to ask for these, there is no shame in asking or disclosing that you may need more assistance, extra pillows can help you get more comfortable on the flight which may enable you to feel better on landing. Alternatively, buy a neck pillow and carry that on board with you. Bonus, the neck pillow can also be used when travelling by car!
Traveling by Car
If you are long-distance traveling via car, there are steps you can take to mitigate the effects of travel. Try to travel outside of peak hour traffic, preferably early morning to avoid traveling during the heat of the day.
We recommend taking a pillow and a lap blanket so while traveling you can rest comfortably; the pillow will allow you take the strain off any sore joints as you can pop it under your knees, use it to rest your arms on, or even use it as a pillow to get some sleep, while the blanket can block out sun, or keep you warm. Take frequent breaks on long-distance journeys, stop in towns to use the pit-stop facilities, and have a stretch and walk around a little to clear any stiffness in the joints. Pit-stops are also a fantastic time to grab a bite to eat and hydrate. If it’s a route you haven’t taken before, prepare in advance by choosing pit stops that will suit your needs, including knowing where toilets are along the way, and eateries that suit any particular dietary requirements you may have.
Take snacks with you in the car which are easily reached from your seat. If you have Postural Orthostatic Tachycardia Syndrome make sure you have plenty of water on you to stay well hydrated and consume with a salty snack like popcorn or rice crackers, so you aren’t needing to stop too frequently to use pit-stop facilities.
Try to share the driving load if possible, between multiple people so you aren’t too fatigued or sore when you get to your destination. Once at your destination, find some time to rest. Traveling can be taxing on healthy people, let alone people with chronic health conditions like EDS. It is important to make sure you get sufficient rest once at your destination so you can enjoy any activities you have planned without overdoing it, even if this means when planning your trip you head off a day early.
Take something to do during the journey, a good book or an easy craft project such as knitting or crochet, maybe a tablet with some games or access to watch a movie or tv show. Don’t overdo it with your chosen activity, take frequent breaks to avoid strains and headaches. Make a fun music playlist that you can play while traveling.
Where possible, bring aides. A walking stick, crutches, or a foldable stool in the boot as a “just in case”, can mean the difference between enabling yourself to enjoy your day for longer/with less fall out, vs being in pain for days. Aides help enable us to do more, not less.