Cerebral Palsy & Traveling

Please note that this section has been adapted from the Cerebral Palsy Research Network’s co-founder’s CP Daily Living blog. The content is personalized and based on her experience when her daughter was young. Over time we will update this information and expand the content.
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Getting Started: Traveling with Cerebral Palsy

Careful planning and research are vital when traveling when you have a disability like cerebral palsy. Here are some tips to get you started:

• Begin by making a list of places or activities that interest you.
• Leave yourself plenty of extra time both while traveling to your destination and when you arrive.
• It is important to keep your expectations realistic so that you don’t get disappointed by limitations in accessibility.
• Make a list of what will require extra time, care and attention, and think about how this may affect your travels.
• Find out details about about ground transportation, hotel accessibility (ie are there accessible routes to all activities and bathrooms?) and excursions before you leave.
• Talk to hotel managers, ask them to walk the property and inspect rooms or consult with their activity or maintenance staff if they are unable to answer your questions. This will help you minimize unfortunate surprises during your trip.
• Chat with other families and wheelchair users online who have been to the places you are considering. There are many disability travel forums that include people with cerebral palsy or their family members who love to travel!
• Sometimes the best vacations are the most accessible vacations. Consider visiting places that may not be top of your travel list, but have a proven track record and commitment to accessibility. This will save you the hassle of dealing with accessibility issues and may mean you have more fun.

In addition to preparing for your practical and material needs, it’s also a good idea to mentally prepare yourself ahead of time to be as flexible as possible. If one activity doesn’t work out speak with a concierge, front desk associate or a local travel advisor about an alternative.

Places to Travel When You Have Cerebral Palsy

Below are some resources that may help you figure out places to visit that suit your family. These sites were founded by families that have children or relatives who are wheelchair users (three have cerebral palsy):

1. Accessible Travel Reviews– This website was recently created by a mom whose eldest daughter has cerebral palsy and uses a wheelchair. Their family loves to travel but has a modest budget so their family was always scouring the internet for information on the most accessible and affordable places to travel. Unfortunately, a marketing description isn’t always as reliable and detailed as first-hand feedback from a family or individual with a disability who has been there. With this in mind she took the leap to start Accessible Travel Reviews.
2. Have Wheelchair Will Travel– This is a Facebook page started by a Sydney, Australia based family who loves to travel and whose teenage son has cerebral palsy and is a wheelchair user. Their passion for travel led them to create this virtual space detailing their personal travel adventures and insight on traveling to places with their son.
3. You also may wish to check out this blog Kellisa’s Path, written by a dad who is the father of a young disabled girl and his determination to push his daughter along as they share a passion for travel and adventure.
4. Disabled Travelers website- A site developed by a younger brother of a woman with cerebral palsy and cognitive disabilities who uses a wheelchair.
5. Euan’s Guide- Based in the UK, this website and related social media venues, offers an opportunity to share and/or read reviews of accessibility for places you have visited or wish to visit.
6. Access Anything– An online travel resource for people with disabilities. They began in 2003 and published two guidebooks in 2005 and 2007. With their partners at Adaptive Adventures, we helped bring three inspiring adaptive sports camps to our home in Steamboat in 2006, which we turned over to STARS (Steamboat Adaptive Recreation Sports) during winter of 2010-2011 as it stretched its wings as a new non-profit organization.
7. Curb Free with Cory Lee– An excellent wheelchair travel blog full of ideas and adventures from Cory Lee’s travel adventures around the world.

Other Resources

1. 39 Theme Parks with Special Needs Access Passes
2. NBC’s Best Vacation Spots for Special Needs Families 2013
3. Travability– A fantastic website dedicated to providing accessibility information for some of the world’s best travel destinations. They have a wonderful Facebook page as well.
4. Access Anything– Adventure travel for people with disabilities.
5. We went to Disney World and had a fantastic experience. Here is the blog post I wrote about it. *Please note that the special needs program at Disney has changed since I wrote this post.
6. Morgan’s Wonderland– An accessible amusement park in San Antonio, Texas.

Air Travel Resources & Information

Adventures in air travel…some days are better than others but the more preparation you do, the better off everyone will be. The most important thing you can do is prepare and educate yourself about what to expect on your trip. You have extra gear when traveling, so bring lots of patience and recognize that as always in life you will be dealing with many different personalities.

• For US based travel- If you call the TSA Cares toll free number at 1-855-787-2227 72 hours in advance of travel they will arrange to have a representative meet you curbside and take you through security and to your gate! This would have spared me some frustration (even some tears) when I used to try and travel with Maya alone. There is a “Passenger Support Specialist” at every airport in the US so pass the info along!”TSA recommends that passengers call approximately 72 hours ahead of travel so that TSA Cares has the opportunity to coordinate checkpoint support with a TSA Customer Service Manager at the airport when necessary.”- From the TSA.gov website
• Having trouble with your seat assignments? If the general reservation’s agent isn’t able to help you, contact your airline’s corporate office. They often will make arrangements ahead of time to ensure traveler’s with disabilities and one companion are seated together, along with working to meet other requests such as a reserving a more optimum seat assignment for boarding and deplaning, or using the bathroom etc. Here is an Airline Consumer Contacts list.

Applying for an Exemption to FAA Policies/Rule-Making

• I.E.: Requesting Use of a Orthopedic Positioning Seat for use During Take Off and Landing
  http://www.faa.gov/regulations_policies/rulemaking/petition/
• Information From the FAA Website About Traveling with a Disability
  http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1572.shtm
• The Air Carrier Access Act
  The Department of Transportation has a rule defining the rights of passengers and the obligations of airlines under this law. This rule applies to all flights of U.S. airlines, and to flights to or from the United States by foreign airlines. The following is a summary of the main points of the DOT rule (Title 14 CFR Part 382). You may obtain an accessible electronic copy of 14 CFR Part 382 or this fact sheet at http://airconsumer.dot.gov or call DOT at 202-366-2220 to request a copy.
• The USDOT continues to maintain a toll-free telephone number (including a toll-free TTY number) that consumers who experience disability-related air travel service problems may call to obtain information and assistance.
  The disability hotline is currently operational from 7:00 a.m. to 5:00 p.m. Monday through Friday, excluding Federal holidays. Members of the public that call outside those hours (i.e. evenings, weekends, and holidays) can leave messages and those calls are answered when the office reopens the next business day. The hotline numbers are 1-800-778-4838 (voice) or 1-800-455-9880 (TTY).
• TSA now has a toll-free helpline for travelers with special medical needs and disabilities.
  The helpline number is designed to assist travelers with disabilities and medical conditions, prior to getting to the airport. Travelers may call TSA Cares toll free at 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint.

Important Lessons Learned

“When people go out of their way to offer assistance or a smile, I welcome it, cherish it, and have allowed myself to feel tremendous gratitude (rather than cultivating an attitude of entitlement) for their kindness.”

Check with your doctor to make sure it is ok for you or your child with cerebral palsy to travel. Be sure to bring medicines and necessary supplies. If you are traveling into a different time zone ask your doctor about when to administer your or your child’s medication. You may take medication with you through security without the traditional limits on size. Bring syringes or anything else you may need to administer medication. You want to make sure you have access to it in case your plane is delayed and/or if your luggage gets separated from you.

“They moved our seats 24 hours before our flight and now we are not sitting together.”
Call the airlines and explain why your family or traveling companion must have a reserved seat next to you or your loved one. You may ask for pre-boarding services at the flight gate.

“My child cannot sit up on her own in the seat with the regular seat belt and she is above age 2 (no longer a lap child).”

You may use an FAA approved car seat or you can consider a safety harness such as: Kids Fly Safe. This seat belt system is the only approved FAA alternative to the regular seat belt on the airplanes. Once you are in the air and before landing, you may use an orthopedic positioning devices. We have used the Seat 2 Go and the Special Tomato Booster Seat. If you aren’t going to use your car seat on the airplane, you may baggage check it with the airlines for free, but it’s best to have a protective cover on it during travel.

“The combination of the Booster Seat and the Kids Fly Safe seat belt is the best solution we have found for Lillian Maya.” -Michele Shusterman, CP Daily Living blog.

What is the Easiest way to get Through Airport Security Screenings?

• Be as cooperative and calm as possible.
• If you would like or need for your child to remain in her chair you need to ask for a “manual screening”.  If you have someone else traveling with you have them go through the screening process and collect everyone’s belongings on the other side. One parent or person will accompany a child while they are being screened. Expect to have your child patted down head to toe. If possible they will lean your child forward to check their back.  TSA regulations now do not require children under the age of 12 to remove their shoes. If your child is older than 12, and you have concerns about removing his/her shoes, talk to the TSA rep or supervisor.
• If you are traveling alone with your child you may ask a TSA security officer whether you should collect your belongings before they begin the screening. Some security screening stations are more organized than others so once again you may need to speak up about and make them aware that you are traveling alone and that your belongings are on the belt.
• Do not touch your child’s chair once you have gone through the screening machine and before she has been screened.* If you are wondering about the reason for this, it is because if the child’s screening turns up something questionable (and you were touching her chair) you will both need to be re-screened.

*Remember if any of this makes you uncomfortable you may choose to carry your child through the screening machine but you will need to send their chair through the belt if it collapses.

How Do I Have My Child Eat Comfortably in the Airport Terminal?

Since children with cerebral palsy go through several years where they are unable to reach a table, you will need to consider how to comfortably feed them while traveling. Will you have your child eat in his/her chair? Do you need to bring a portable eating chair or can your child sit in a regular seat? Having a tray that attaches to either to a wheelchair or that is part of a booster seat is very helpful. Trays can be ordered as an accessory with many wheelchairs. They also may come in handy at school. When traveling young children may be able to use something like the Fisher Price Healthy Care Booster Seat. It has a long handle for easy carrying and a three point harness.

How Do I Board the Airplane?

Be sure to let the gate attendant know that you will need extra time getting onto the plane because you or your loved one has a disability. If you are traveling alone request assistance when booking your flight. You will see an option to do this when you purchase your tickets. Making these arrangements ahead of time allows the airline to plan ahead and ensure that their gate is equipped with appropriate access for getting on and off of the plane.

How and When Do I Get Off of the Plane?

It’s typically best to deplane last if you need more time or you have to wait for your wheelchair to be delivered. If you have to make a connection and are traveling alone, you can ask flight attendants to help you deplane. Also, you may ask flight attendants to communicate with the gate agents to let them know that you may need extra time to make your connection. They may arrange to have transport pick you up and take you to the next gate. If you have arranged for assistance someone will be waiting for you (probably with a wheelchair) at the entrance to the plane.

Using the Airplane Bathroom

Check out this video about the new Space Flex concept by Airbus providing wheelchair accessibility aboard single aisle aircrafts! It’s already being used by European airliners such as Latam. http://www.runwaygirlnetwork.com/2014/12/02/new-video-drives-home-the-benefits-of-a320-space-flex-lavatory/

There are two pioneer airliners who reportedly have started planning/installing accessible restrooms on some of their airplanes. One is Qantas and the other is Singapore Airlines. Check out this blog post from Have Wheelchair Will Travel and their experience with Qantas.

Airplane Travel Questions You May Have

• “My child has liquid medications that must come on the plane with us but they exceed the 3 oz limit what do I do?”
  See the following link to TSA’s website regarding special needs accommodations:
  http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm

• “My child cannot drink out of a regular cup and/or has special milk, can I bring it on the plane?”
  Yes you can:
  http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm

• “My child will be traveling with an aid with/out me do we have to pay for the extra seat”?
  Check with individual airline carriers to find out about if this is possible.

• “How do we travel with our wheelchair and have access to it during transfers, boarding and deplaning?”
  Let the gate attendant know you would like a tag for your child’s chair or stroller. They usually know but make sure they understand you need access to it when you get off of the plan and you do not wish to have it go through baggage.

Advocacy|Innovative Ideas for Improving Airline Travel for People with Disabilities

• All Wheels Up is an organization dedicated to making it possible for passengers to flying in their own wheelchairs.
• Check out the TravelChair developed in the UK by Meru (currently designed for use for ages 3-11). Some commercial airliners have started stocking them beginning with Virgin Atlantic. Although only currently approved for use in the UK, Meru is seeking FAA approval as well.

The following organizations may be interested in networking and/or hearing your feedback about improving airline travel:

• Association for Airline Passenger Rights (AAPR)– This organization holds an annual accessibility conference
• Airline Passenger Experience Association

Sending Supplies Ahead

Sometimes sending supplies ahead can relieve a lot of travel stress. It’s worth the time and energy to make arrangements with your host, hotel concierge or some other party to determine if you may send items ahead of time and have them securely stored, particularly when you are traveling with a small child. As an adult you can contact local businesses that rent equipment such as beach wheelchairs. Check with local visitor’s centers and the Chamber of Commerce for more information.

Here are some suggestion of what to send ahead, bring with you or rent particularly if you are traveling with a cerebral palsy who has cerebral palsy:

• Bathing chair | seat (some hotels have these for adults if you ask ahead of time)
• Portable toileting/shower chair
• Bed Rails- We have successfully used Bed Bug Bumpers and have even been able to pack them in our suitcase. These are foam bumpers that fit under fitted sheets to help prevent your child from rolling off of the bed. We also put pillows on the floor for extra protection. Occasionally we have used an inflatable mattress or made a bed on the floor for her rather than having her sleep in a raised bed.

For babies/kids:

• Supportive sitting chair- For you children supportive chairs can be used on the plane (except for take-off and landing when you must use an FAA approved seat), use for general supportive sitting (ie. hotel room), a booster seat for use in restaurants.
• Portable booster seat- We had great success with the one associated with this link.
• Books, small games

The information from this page appears in our free and downloadable cerebral palsy tool kit.