11 Tips for Traveling to Disney (with Medical Needs)
This past winter we took our second family vacation to Walt Disney World. It was even more magical then ever, because I got to experience it through my daughter's eyes. My last time at Disney I was struggling to get pregnant, on my 7th round of fertility treatment, and little did I know that I was pregnant with Adeline while I was there. Each time I saw a pregnant woman or a baby I would put my hand on my belly and beg my little embryo to hang on . She sure did, but she was not without her challenges. Adeline was born prematurely, spent most of the first two years of her life in the hospital, had 12 GI related surgeries, and when we traveled to Disney she still had several health issues to consider. She has Short Bowel Syndrome, has a feeding tube, a broviac, and receives IV nutrition for about half of her caloric needs and has occasional hypoglycemia. Traveling with a complex medical toddler can be stressful, especially when you add on some developmental delays, attention issues, etc. But do not worry, if you want to travel to Disney with a medical issue, I've got you covered! We travel every 6 weeks for medical care from Baltimore to Boston, so we consider ourselves experts on medial travel in terms of flights, but now that we've been to Disney I am going to share all the secrets! It's as magical as everyone says and I cried tears of joy nearly every day. #WorthIt
1.Choose Your Dates Wisely
One of the very first things you should think about is when you should go to Disney and there are two things that should be considered; crowd size & weather. Peak season means you will have to wait longer in lines and weather should be considered if you are impacted by the heat. Some great times to visit the park in terms of crowd size is late August to September (when kids are back to school), Mid November through mid-December (except the week of Thanksgiving), second week of January through mid-February., and first three weeks of May. In terms of heat, the coolest time to visit is November through March.
2.Stay Inside the Park
Disney World Resorts have Accessible Rooms for no extra charge and there are some features that will help your stay with a medical or special needs child more manageable. If you stay inside the park, you also have access to their transportation directly to parks that runs on a frequent schedule. The monorail is, by far, the most wheel chair/stroller accessible mode of transport, but the buses also offer lifts for transport. The least accessible is boats so I would avoid those resorts. It's important to note that every Accessible Room is different and some of the features of the Accessible Rooms include;
Larger rooms to accommodate wheel chairs
Grab Bars at Toilet and tub
Open Bed Frame
Lower Toilet Height
Portable Raised Toilet Seat Available
Wheelchair-Accessible Route in Room
Roll in Showers
Communication features for Guests with Hearing Disabilities
You have the option of filtering by “Accessible Rooms” when you book your Walt Disney World vacation online and I would also recommend discussing accommodations for a specific disability via phone (407) 939-7675 to ensure your specific needs are meet. For us, we requested a full sized fridge for medication storage and an "allergy clean" to our room. This is offered at no additional charge as long as you notify resort in advance and includes a deep dry cleaning with additional shampooing of carpets, upholstery, and drapes. This made me feel better from a germ perspective as Addie's immune system is not is as strong as typical kids.
3.Talk with your team
Begin talking with your team before you book your trip. Talk with your doctors or therapists, medical supply company (DME), and any key specialists on the team. Collect all your thoughts, questions, and concerns in an email and then schedule an appointment so you can discuss it all in person. Tell them about the location, length of visit, figure out the best way to contact them while away. For us, we needed to determine whether Adeline was stable enough, if she could go two weeks without her labs checked, etc. What do we do…if her GJ tube breaks? If her catheter has a tear? If she has a fever?
We also asked them for a letter of medical necessity briefly explaining some of Addie’s diagnoses and outlining the types of supplies and medications she needed. This is something you do not need because of HIPPA, but is something we just felt more comfortable traveling with.
You’ll also want to discuss logistics with your DME and make sure you can have enough supplies delivered beforehand and see how quickly they can get you supplies in case something happens. (e.g. a pump breaks, you’re delayed in your return, etc.)
4.Plan, Prepare, and Pack All of Your Medications, Supplements, Etc.
One of the most difficult parts of traveling with a medical complex kiddo is traveling with all the medical supplies. It's a lot but I have a few general tips for you.
Carry On Medical Necessities
Don’t check anything you need in terms of medical supplies. Check your diapers, but carry on your dressing change kit. Carry cold meds and perishables with you, check the yogis and puffs. Remember, medical carry on bags don’t count towards your carry-on limit (if the bag only contains medical supplies).
We've had issues twice with non-medical luggage in the times we traveled with Adeline, and it’s just not worth the risk of losing supplies. You can take as much as you can carry, so take advantage of it. You can wear your underwear inside out for a couple days and you can brush your teeth with your finger. But you can’t hang TPN with thoughts & prayers…
It's just not worth the risk.
Call Your DME
Prior to booking, I was on the horn with our DME. In our situation, we decided to just carry on all our perishable supplies for our 7-day trip. I set up early delivery of non-perishable TPN supplies, called our DME to confirm, and asked for extra supplies to bring along. In general, I’d recommend traveling with a backup pump, charger, and two extra days’ worth of supplies. The last time we traveled to Boston, we got hit with a Bomb Cyclone and 2’ of snow, so yeah…
If you are staying at Disney Resort make sure that you are aware that the nearest pharmacy is a couple of miles off property for which you will need a car.) I can't encourage you enough to work on this ahead of time as some medications can only be purchased with insurance at certain intervals so you will want to work this out with your doctor and insurance company.
Use Snail Mail (thanks Amazon Prime)
When you can, mail supplies ahead. We sent diapers, wipes, bed pads, sposies, formula, and many or our larger, non-perishable, non-medical items to Disney ahead of time and had a trusted person pick them up. This freed up a lot of space and saved John’s shoulders & back.
If flying, call TSA Cares
TSA has a special help line designated for with travelers with disabilities, medical conditions, and other circumstances; anyone who needs assistance or special-handling during the security screening process. Because Adeline would be connected to her PN and be receiving feeds via GJ tube during security, we called them so we’d know what to expect. They told us to give ourselves an extra hour to get through security, that most likely we’d all be patted down by airport security, and that someone would be handling all our non-scannable supplies.
We set up an appointment with a Passenger Support Specialist (PSS) to meet us at security and help us through the process.
5.prepare for the sights & sounds
Addie does have some sensory issues, so we did some things to prepare her. It is Disney is loud and bright and overwhelming to a child with sensory issues. To prepare her, we watched a lot of videos on YouTube with the parades, firework show, some of the rides, you can find everything on there. This just gave her an idea of what to expect. We also got her a pair of Baby Banz Ear Muffs to drown out the noises if it got too loud. We worked on her being able to say, "it's too loud". We used the stroller a lot if in crowds so I could put stroller sun protector over her if it was too much. We brought her kindle so she could be occupied if we needed to sort of go off towards the side and take a minute. We also planned breaks into the day and made sure to go home, take a nap, and also planned two non-park days during our 7 day trip.
6. Plan a Route
Another benefit to having a travel agent was she did an amazing job researching ahead of time to plan our route in a logical way. We picked a few things we knew we wanted to do, and were able to do more without wasting time walking from one side of the park to the other. A helpful tool was the "My Disney Experience App" which helped us plan our days. It is totally free and you can find out more about the app by clicking HERE. We also knew where all the Baby Care Centers were inside each theme park as this was a great place to take a break. It has private nursing room with rocking chairs , changing room with tables and a unisex bathroom , feeding area with highchairs , kitchen with microwave, oven and sink , main room with television, table, chairs and sofa and on-site shop offering formula, baby food, juice, diapers, wipes, sunscreen, over-the-counter medications and clothing for purchase
7.Stroller as a Wheelchair
Because Adeline is connected to her feeding tube and is not quite able to carry her feeds all the time, has some gross motor delays, attention issues, and hypoglycemia, we decided to use our stroller as a wheelchair. You can do this by receiving a tag from Guest Services that you can place on your stroller. You do not need any medical documentation to access this benefit. The nice thing is the stroller can be used while waiting in line, in a show, and roll into restaurant and your party can go with you.
When possible, the same line is used for those in wheelchairs and the standing guests. Visit the Cast Member at the entrance to the regular or Fastpass+ queue (depending on how you will be riding) and they can tell you how to access the attraction.
Guests may bring their own wheelchairs or they may rent one at any of the 4 Disney Theme Parks. Wheelchairs are $12 per day and are available on a first-come, first-served basis. Courtesy wheelchairs are available at the Walt Disney World Resort for guests with limited mobility to travel to and from disability parking and to the nearest wheelchair rental location. More information on accessibility for wheelchair users can be found on the Disney website.
8. DAS Card
If you have a disability (either apparent or non-apparent) that would prevent you or your child from waiting in an attraction line, you can obtain the Disability Access Service (DAS) Card from Guest Relations at the main entrance to the park. The DAS Card is good for your entire family. Just one key thing: Your child needs to be present for all of you to go on the ride.
In order to use the card, a member of your party will visit the entrance to the attraction to receive a return time to your Magic Band. After you receive return time, you can do whatever you want until your listed time. For example, if Small World has a wait time of 45 minutes, the Cast Member would add a return time for 45 minutes from the current time. This eliminates the need to wait in line and when it's time to return to the attraction you will enter through the Fast Pass line. Once you finish one attraction, you can get a wait time for another attraction.
The nice feature is you can use the DAS card in conjunction with Disney's FastPass. We had the Disney App on our phones, we were able to get FastPass+ selections for the rides we knew we wanted to get on. (You can only FastPass+ 3 rides at a time.) Once at the Park, we scrolled through the Disney App looking for the rides we wanted with the longest wait time. We went to the ride and asked for a return time. Then we used the App to see which ride had the shortest wait time and headed to that one. And in between we also used had our FastPass+ selections. This post on the Disney Parks Blog discusses the Disability Access Service Card in more details
9. Use a Travel Agent
We were lucky enough to travel with my Mother in Law, who also happens to be a travel agent! The #1 reason to book with Travel Agent? Because you not only have someone with expertise in navigating the Walt Disney World® Resort, but you also have an advocate who cares about the special needs of your family. But don’t choose just any travel agent, choose one who has experience with families with special needs and is familiar with the challenges a Walt Disney World vacation can bring to those families.
Jan Sleeper is a travel EXPERT and offers concierge travel planning. As the Central Florida Destinations Leader and a specialist with 3D Travel Company, an Authorized Disney Vacation Planner agency, she is able to help families with special needs because of her vast experience and insider knowledge of the Walt Disney World® Resort. She has helped plan vacations for families with children on the Autism Spectrum and she has traveled with her granddaughter who has special medical needs, so she is familiar with the challenges families can face. Whether you are nervous about traveling or didn’t think a trip such as this is possible, Jan handles the details, giving guidance and tips for your unique needs to make the planning as stress-free as possible…so you are free to make magical memories. You can reach her here or email firstname.lastname@example.org
10.Be Realistic About What You Can and Can't Do
It's important you are realistic about what you can and cannot do. For us, we spoke to our medical team and made some adjustments to Addie's feeding schedule, hydration, and made sure to plan in rest. We followed Addie's lead, and made sure to take breaks if we needed. It's also important you are up front with the people you are traveling with. We encouraged everyone to continue with the fun while we went home mid day to nap and rest. It is easy to get wrapped up in the day and want to keep going but it's more important to pay attention to your body and it's needs.
11. believe all the hype
Of all the places to go, Disney is definitely a place that is incredibly open to people with varying needs. I felt very accepted, and often do not since Adeline's conditions are very invisible. Everyone was very accommodating and believe in all the hype, Disney is magical. We had the BEST time ever and already planning our next visit.