Disclaimer: I am not a professional, I am simply speaking from the experience of planning this trip, there may be things I have missed. Please don’t hesitate to contact me if you think I have. There may also be things that are irrelevant or different based on your destination.
Planning an overseas trip takes planning, planning an overseas trip with kids takes a lot of planning and planning an overseas trip with a child with disabilities or medical needs is a tactical mission.
Two years ago, I started planning a two week trip from the UK to Orlando, Florida for our family of six. Our daughter, Avery has Cerebral Palsy, among other conditions – it’s safe to say her medical needs are pretty complex!
I wanted to write this post to share what I’ve learned along the way, the do’s and the don’ts and how you can plan an overseas trip with your disabled child.
I won’t lie, there’s a lot of ground to cover, a lot of planning is involved and the process can feel a little overwhelming. But hopefully I can help you start. In my opinion no child should have to sacrifice as a result of medical needs, sadly that’s not always the case, but planning a family holiday is possible.
First things first…
This is your first step, before you book, before you even decide on a destination, touch base with your child’s medical professionals. Are they fit to fly? The last thing you want is to fork out a deposit when traveling isn’t actually safe for your little one. Do they have a condition that could be affected by the high altitude or cabin pressure? Do they have any medical devices that aren’t compatible with flying?
If your child isn’t fit to fly, you may still have other options. Travel by car or ship? Unfortunately, if there’s a reason why your child can’t travel at all, you just need to cut your losses. Safety first! But that doesn’t mean there won’t be a chance in the future.
Booking Your Trip
This part is customisable, decide where you’d like to go. Think about your child’s needs, do they cope well in the heat? If not, perhaps choose a cooler destination or travel out of season in warmer climates. As for us, we are traveling in April, as we know Orlando in the summer will be far too warm for my daughter.
In my opinion, package deals may be your best bet, especially if this is your first trip with your fragile little one. We are traveling with Virgin Holidays. Our flight, accommodation and car hire are covered, which means our special assistance booking applies to all, saving us a bit of extra work.
Speaking of special assistance…
I 100% recommend you take advantage of this. Last year I traveled from Gatwick, there was a separate security for special assistance bookings and families, and there was a quiet area. It was much less overwhelming than the usual hustle and bustle of an airport. On our way home we were chauffeured by a buggy, straight through passport control and to the luggage carousel. I was very impressed with the service, and will be using it this time around.
Travel Insurance
You need it. Non negotiable. There are many companies that specialize in pre-existing medical conditions. I would start there.
Just a heads up – it is generally more expensive than if you don’t have medical conditions. The severity of the conditions can change the price massively.
When I set up our insurance, Avery was only 6 months old. Therefore not considered ‘immobile’, a year and a half later, my premium went up by 4x the original amount as she is 2 and technically should be walking (I could ramble on all day about the unfairness here but I won’t).
Make sure you keep the insurers up to date, if things change, you may not be covered.
Traveling With Equipment and Supplies
This will vary massively on your personal circumstances and your child’s conditions. So I’ll share what we’re traveling with and why.
Feeding Pump & Feeding Supplies – My daughter is 100% G tube fed so we will need everything she uses daily along with anything we may need in an emergency. This includes a spare button G tube, extra extension sets, giving sets, plenty of syringes, enough feed and extras, stoma stoppers and an NG tube just in case.
Fortunately, we are staying in an apartment with a fully equipped kitchen, so we have access to a fridge and will be able to wash and reuse her syringes. Something to bear in mind if your accommodation does not have these things. Factor in how much you will need.
Firefly GoTo seat – This is mostly for the flight. Avery cannot support her own posture, she can’t sit unaided. So a plane seat just isn’t suitable for her. I can strap her GoTo seat to the plane seat, and that will provide her with enough postural support, at least for take off and landing (I imagine she will be held most of the flight).
I did check with our airline to make sure this was suitable for the plane. Some equipment may not be.
Pulse Oximeter – This is essential for us. Avery uses this when she sleeps every night to keep an eye on her oxygen levels.
We are traveling with Avery’s stroller, but if you use a wheelchair, factor that in too.
Essentially you should be traveling with everything your child either uses regularly or may need, either in an emergency or not.
Some airlines will provide extra luggage allowance for medical equipment and supplies, so it’s definitely worth checking with them.
Medicine
This is probably the part of my planning that has caused me the most stress. Avery takes a lot of medicine, some of which are controlled drugs. My biggest fear is turning up at customs USA side and being detained or having her meds confiscated. That would be game over for us. I have done my research and am doing everything I can to avoid this.
Check the rules and regulations on medicines in the country you’re traveling to. In some countries certain drugs are not allowed.
Travel with medicines in their original containers and packaging and make sure they are all labeled with the correct name, dates and dosage, and only travel with as much as you will need for the duration of your trip, perhaps a little extra just in case of spillages (accidents happen).
Take up to date prescriptions and a note from your child’s doctor listing their medical conditions, medicines, and reasons for taking them.
Paperwork
Alongside paperwork and evidence for the medicines, you should take paperwork for everything you need that may be questionable. We are taking a letter from Avery’s dietician covering her feeding supplies and a letter from her nurse covering the GoTo seat.
Don’t forget paper copies of pretty much everything else, your travel insurance documents, hotel confirmation, hire care paperwork, boarding passes and of course, your Covid passports. In my case I am also traveling with paper copies of our ESTA’s, but this may not be relevant to you – you should always check if you need any kind of visa for your destination.
Don’t rely on your phone, your battery could die, or you may not have internet.
Hiring a car?
This was a boo-boo on my part. We had planned to travel with Avery’s own car seat, until one of my lovely subscribers reminded me to check the regulations. Low and behold, EU regulations are different to the USA regarding car seats, and her car seat doesn’t meet theirs.
We will now be hiring one through our car hire company, luckily they have seats that will meet Avery’s needs, but last minute changes make me nervous, and I wish I checked this sooner.
Be Prepared For An Emergency
It’s not nice to think an emergency situation will happen on your family holiday, but its better to be safe than sorry. Research the closest hospital to your accommodation, make sure they have a Pediatric unit and an Emergency Department.
Make sure all of your child’s medical professionals know about your trip, when and where you’re going. They can’t do a lot from that far away, but there are always phones and emails.
Lastly, always travel with essential medical equipment in your hand luggage. All medicines, enough feeding supplies for a few days, and anything your child would need in an emergency. Luggage can get lost, the last thing you want is start your trip trying to source medical supplies.
There’s probably things I’ve missed or forgotten to mention. But I feel pretty prepared for our trip knowing Avery should have everything she will need. I know where the closest hospital is and I know her doctors are on the other end of the phone.