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Perception plays a large role when traveling with a child with special needs. So, if you’re a parent learning how to negotiate the world of travel with a child with special needs, you’ll also want to be armed with as much intel as possible to make the process a bit easier. Since we have years of special needs travel experience under our belts, I’ll share some of my top travel tips in more detail and outline some ways to help you streamline your family’s travels. While this advice is based on my experience traveling with a child with rather complex needs, many of the tips here apply to all families.

boy with crutch at farm
(Photo by Antons Jevterevs / EyeEM / Getty Images)

1. Frustration With the Special Assistance Department

Most airlines, car rental companies and hotels have dedicated teams to help when you need special assistance. This sounds amazing, and they are a great resource for information on how things should work.

I have never called the car rental departments, at this point I know to book a large enough car to fit the wheelchair. For hotels, I just call the properties directly to discuss any unique needs and I have never run into any issues.

But I have contacted American Airlines’ Disability Team a few times in advance of trips. Much of this was to ask about my son’s stroller that was being used as a wheelchair. I was assured it would not be subject to American’s gate check weight limit of 20 pounds for a stroller.

American Airlines gate agent helping customer
(Photo courtesy of American Airlines)

Yet, while traveling, American’s on-the-ground employees haven’t always followed the Disability Team’s directive. On one occasion, I raised the issue to a manager who agreed with the gate agent that it was a stroller and not a wheelchair — despite the fact that my son was 5-years-old and had challenges walking. I was even told if it looked more like a wheelchair, they would be happy to gate check it. I’m not really sure what looks have to do with it. It’s an assistive device being used as a wheelchair for a child. In this case, the American agents called for a wheelchair when we got to LAX. This resulted in my 5-year-old sitting in an unrestrained wheelchair designed for an adult rather than being securely in his own device.

In this case, I had called the special assistance line, asked at the check-in counter where they did not think it would be an issue and had the airline lounge call the gate to tell them about the “stroller” ahead of time. This was a hard situation because I felt raising the issue any higher would likely result in us missing the flight or not being allowed to board. On the return from Los Angeles, we had zero questions about the issue and that was on a much smaller regional jet. These sorts of operational inconsistencies can be maddening.

Westin Wheelchair Airport
Westin in the airport wheelchair at LAX. (Photo courtesy of the author.)

Disney, on the other hand, has this situation down pat. They give you a “stroller as a wheelchair” pass that clearly outlines the device as a mobility aid. This seems like a simple fix to an important issue.

I have talked with others traveling on a variety of airlines who all shared similar stories about getting great information from the disability team, only to have the reality at the gate, or in the air, differ, even for pretty routine requests and situations.

Tips to Help Deal With the Special Assistance Department

  • Continue to call the special assistance line with all your questions.
  • Ask them what to do if things do not go as expected when at the airport or in the air.
  • Try to get someone’s name and direct extension, if you can.

2. Understanding Your Health Insurance

What does this have to do with travel? A lot. While not all kids with special needs have complex medical issues, many do. Even if your children do not have any special needs, understanding your health insurance before you travel is important.

Why? First off, many health insurance plans have greatly limited or potentially no coverage out of network, out of state or out of country. I know our expensive group health care plan has no coverage outside the US, and no out of network coverage in the US unless the issue is life threatening. This means if the kids get an ear infection at Disney World, we need to find an in-network provider or pay 100% of the cost out of pocket.

insurance claim form
(Photo by Manop Phimsit / EyeEM / Getty Images)

When traveling outside the US, I always make sure to get third-party medical insurance for the whole family. Getting coverage with zero dollar deductible and a $500,000 limit can cost just a few dollars per person per day. Well worth it for the peace of mind. I like reviewing coverage options at InsureMyTrip.com. The one thing to keep in mind with third-party plans is most have exclusions on pre-existing conditions, so ensure you read the terms closely for the “look back” period. I look for plans that cover sudden reoccurrence of pre-existing conditions. That said, I have never had to file a claim, so I cannot comment on claim payouts.

Tips to Avoid Health Insurance Issues on the Road

  • Always keep your doctors’ telephone numbers with you so in the event of an issue, you don’t need to spend time looking them up.
  • Review your primary health insurance policy before any trips so you do not run into any surprises. Remember, most plans change yearly so make sure you keep current with the latest changes. PS: Ours keeps getting worse each year, not better.
  • Look into using a credit card that provides some level of emergency coverage, even outside the US. The Platinum Card® from American Express even has included medical evacuation coverage.
  • Look into third-party medical insurance that covers both emergency and non-emergency issues. Getting medical-only travel coverage for a family is often cheap.
There
There’s no such thing as an affordable medical evacuation. (Photo via Shutterstock)

3. Security Challenges (Not Just at the Airport)

Security screenings can be stressful, to say the least. For us, the most stressful part is managing all the stuff we need to carry on the plane. Plus, there is the fear of what the TSA is going to question on this trip — they always question something. At times, we had everything from a stroller, bags full of expensive medicine with ice, syringes of blended food, specific foods, diapers, car seats and entertainment devices all going through security at once. We could sometimes fill up a whole belt of the X-ray machine ourselves.

Things are a lot easier now that our 4-year-old can pull her own weight and Westin can wheel himself in his wheelchair.

Westin going through the airport
Westin going through the airport

Nowadays, you also have security at all major venues. This means we have to clear security going into places like Disney or a ballgame. I had a hard time trying to explain why we had huge syringes filled with paste on ice in a cooler. This was blended food for Westin’s feeding tube, but something that was totally new to the theme park security guards. Never the less, after a few questions we went on our way.

Tips to Help Manage Security

  • Be calm, polite and respectful — no matter how silly the question or request may seem. Getting confrontational with security only ends up slowing things down even more.
  • Getting TSA PreCheck has helped tremendously with streamlining the airport security process. Remember, unlike Global Entry, where each person no matter the age needs to have it, TSA PreCheck allows children under 12 to go through the expedited line with an adult that has PreCheck. We’ve also recently added CLEAR to our list of ways to get through security faster.
customer-at-jfk-using-clear
(Photo courtesy of Delta Air Lines)

4. Delays, Cancelations and Sick Kids

While this is not specific to children with disabilities, it can have different impacts when your child has special needs. For example, Westin cannot sleep anyplace but on a bed on his belly, so we know not to book flights that arrive too late at night.

A few years ago, we booked a 5pm nonstop flight from Austin to Las Vegas, knowing that getting in at 8pm by his body clock would be a bit late for him. On the afternoon of the flight, it was delayed initially almost three hours. This meant our flight was now leaving at almost 8pm, already past his bedtime. Luckily, the flight was delayed before we had left for the airport so we were able to take care of things at home.

In this case, we were flying Southwest. We gave them a call and explained the situation. Even though we were on a discounted ticket, they rebooked us all the next day with no fare difference, which was fantastic as normally Southwest doesn’t charge change-fees, but does charge the fare differential.

On another occasion, also on Southwest, both kids had double ear infections the night before we were going to leave for Orlando. Southwest rebooked us the next day for no additional fees.

Westin sick
Westin has not napped in about four years so when he naps you know he is sick!

While I have not tried to call any other airlines in this type of situation, I do remember talking to a mom who was on a legacy air carrier and had to change flights twice due to ear infections. I remember her saying the change fees alone for a family of four were staggering and she had to pay them twice. Still, it always pays to ask if a special situation arises.

Tips to Help

  • Try to fly Southwest for all family travel. Really, they are amazing.
  • Look into using miles for flights as those can sometimes be changed or canceled with fewer fees.
  • Book your flights using a credit card that provides travel insurance. This would likely cover the ear infection situation, though not necessarily cancellations due to moderate delays.
  • Purchase third-party travel insurance with trip interruption coverage. Again, this would likely just cover the “true medical” conditions.

5. Inconsistency is Consistent

The only consistent thing about traveling with a special needs child is the inconsistency you will likely encounter This is one of the most annoying challenges to deal with in terms of how your special needs are accommodated. For example, one flight you might have no issues with your wheelchair stroller and the next it is not allowed. You take a FAA-approved car seat on one plane only to be told on your connection that is it not allowed. Or, you board the return flight with the same carry-on bags as your initial departure and are denied boarding because of too many carry-on bags (even though the diaper bag, car seat and medically necessary devices do not count in that limit).

Westin in his car seat on the plane
Westin in his car seat on the plane. Yes, this is FAA approved!

This is by far one of the most frustrating aspects of traveling period, but especially so with special needs as you are often operating outside the “norm.”

Tips to Help With the Inconsistent Application of Policies

  • Never assume the experience will be the same the second time. You might even get lucky and have a better experience, but you may also have more road blocks.
  • Saying “but last time” does absolutely nothing and only makes things worse.
  • Remember the person you are dealing with this time has no idea what happened to you any of the times before, so stay calm, have a printed copy of policies and hopefully a contact name of someone in the special assistance department as a last resort.

Bottom Line

Traveling with a child who has special needs isn’t always easy, in part simply because not every person you encounter is familiar with every nuance and situation. Thankfully, most challenges have solutions as long as you have allotted some extra time, patience and are persistent.

Featured image by fstop 123 / Getty Images

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