Traveling with SMA

By Cure SMA | Published On June 7, 2018

Traveling with SMA

As the summer season nears, many families will make plans to travel across the country to exciting destinations or to spend time with those they love. This is no different for those affected by SMA.

Although travel can present challenges, regardless of distance or method chosen, below are a variety of resources aimed to guide SMA affected individuals and families through vacation season. 

Travel by Car 

Babies with SMA type I should use car beds, as infant car seats can pose a serious breathing risk. For children, teens and adults with SMA, families often purchase a van that is designed for a wheelchair or other equipment.

Some individuals with SMA type II and III can drive a modified vehicle. The car or van must be fitted with special technology to accommodate their needs.

For longer car trips, individuals with SMA benefit from many of the same principles that all car travelers should follow: drive defensively, take frequent breaks, and keep an emergency kit on hand. Individuals with SMA should also add necessary medical supplies and equipment to their car’s emergency kit.

Travel by Plane

Many regulations govern travel with a wheelchair or other medical equipment. Some of these are TSA regulations that apply to all airlines; others are guidelines set by the individual airlines.

Booking your airline registration well in advance, if able, will help ease your travel and give you more time to plan. When you make the reservation, tell the agent about your needs, or your child’s needs. Find out if you can submit documentation or make certain requests before your trip, to make the travel day easier. Most airlines also have a section on their website that covers travel with special needs.

It's best to call 48-72 hours in advance to finalize arrangements with the airline. TSA recommends that you call their TSA Cares help line 72 hours before travel. They will provide you information on what to expect in the screening process, and arrange for any special accommodations on your travel day.

Arrive at the airport early. Even with advance planning, some delays on the travel day cannot be avoided. For example, powered wheelchairs may need to be partially disassembled in order to be stowed properly.

Personal wheelchairs cannot be used on the plane. Often, you can bring your wheelchair to the gate and have it checked there. In addition, TSA personnel may need extra time to inspect equipment, like a BiPAP machine.

Airlines allow passengers with special needs to board the plane early, also known as pre-boarding. By arriving at the gate well in advance of departure, you can take full advantage of the early boarding policy. Just be sure to notify the agent upon arriving at the gate.

Other Travel Information

For travel by other means, such as a bus or train, regulations and accommodations will vary.

Hotels typically have a fixed number of accessible rooms. Since availability can be limited, it’s best to make your reservation in advance.

Public areas and tourist attractions in the U.S. are governed by the ADA, and many other countries have similar regulations. However, some areas do not have these regulations.

Helpful Links

There are many websites devoted to accessible travel tips and guides. These are often the best source of information and advice when deciding how to travel, where to stay, and what locations to visit. Many families have found the following websites helpful:

Topics: Community & Awareness, About SMA, Front Page News

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