- United Spinal’s Care Support Working Group members have compiled their experiences and suggestions to help you create a care support plan for traveling.
- Be transparent about what you need from the very beginning.
- Plan ahead … way ahead!
- Join our Working Groups to share your knowledge with other United Spinal members.
Is travel doable if you need care support? Yes—if you plan!
“Managing your expectations up front is extremely important,” says Care Working Group member Catherine Denny. “The more you know about the trip and what it will entail, the better time you and your caregiver will have.”
Jenny Smith suggests starting with these four questions:
- How accessible is your chosen destination?
- What do you need from a travel companion, and who best fits this profile?
- How will the expenses be split?
- Is your plan safe?
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Read more tips from Jenny in her article for our membership publication, New Mobility: Traveling With and Without a Caregiver.
Once you’ve answered the above questions, it’s time to establish responsibilities for your caregiver and determine the financial expectations.
Being upfront about the days and hours you will need assistance is critical, and it is important for your caregiver to know about any free time they will have. Still, it should be clear that you are hiring them to assist you, not just join you on a vacation.
5 Strategies and Resources to Find a Travel Caregiver
As Miss Wheelchair Michigan 2024, Shanta Favors travels a lot. Rather than ask her primary caregivers to accompany her, “I interview and hire individuals and let them know that they will be specifically hired to provide care for travel or backup care when needed,” she says.
Favors and other Working Group members recommend these resources and strategies for finding travel caregivers:
- Care.com (https://www.care.com/) or Facebook Caregiver Groups
- Contact your local Convention and Visitor’s Bureau to find out if they know of any traveling caregivers who could provide traveling care support.
- Contact agencies at your travel destination to find possible care support.
- Search websites such as Traveling Aide that specifically focus on providing licensed care for travel.
- Ask travel agencies that focus specifically on accessible travel for any possible information or connections to find traveling caregivers.
10 Interview Questions for a Potential Travel Caregiver
Once you find a source for caregivers, you will want to interview them to ensure that they are a good fit with you and your plans. Our Care Support Working Group offers these suggested interview questions:
- Are they strong and agile enough to help you transfer?
- Have they been trained in the basics of biomechanics so they can help you without hurting themselves?
- Are they comfortable helping you with personal needs such as toileting and bathing if necessary?
- Are they OK with medical issues you may encounter, such as constipation, incontinence, respiratory issues, or autonomic dysreflexia?
- Can they handle any medical equipment you use, such as catheters, nebulizers, or subcutaneous dialysis?
- Are they able to safely operate a Hoyer lift or transfer board?
- Have they ever been to where you are planning to travel?
- Why do they want to do this trip?
- Do they have dietary needs or restrictions that may make it hard for them to accompany you to the eateries you want?
- Are they an early bird or a night owl?
What About Travel Expenses?
When reviewing the expectations for expenses with your caregiver, everything must be considered. There are basic travel expenses, such as airline tickets and accommodations, but there are also daily needs like meals and ground transportation.
- Are you planning on paying a set amount for the assistant services, a daily or hourly rate?
- If paying an hourly rate, how will you keep track of the caregiver’s hours?
- Will you pay for the travel caregiver to have their own accommodations, or is the individual expected to share a room with you?
- How about expenses for extra excursions on your trip? Are you able to experience it without assistance? Do you pay for a ticket for the individual, too, or does the assistant have time to explore on their own dime?
- What if your caregiver also wants to join you on the excursion? If you do not need their help, do they have to pay for their ticket?
Keep in mind that most government programs will not pay for caregivers’ work performed in another state.
Keeping Expenses Low
There are various ways to reduce some expenses during a trip, such as staying at a hotel where breakfast is included. Some other possible ways to try and reduce costs are:
- Start planning early. It is suggested that you start at least ten months in advance.
- Travel when others are not. When there are fewer visitors, you may be able to find cheaper travel deals on flights and hotels.
- Contact hotels directly. Hotels are more flexible with rates than many realize and can provide possible value dates.
- Take advantage of frequent flier miles.
- Pack smart and orderly. This can help prevent from buying unnecessary items or forgetting critical items.
- Use public transportation instead of renting a car or paying for an Uber or Taxi if possible.
- Cook some meals yourself. Try purchasing fresh and local ingredients.
- Travel to destinations where you get the most “bang for your buck.”
Planes, Trains, Automobiles and Caregivers
One of the most important parts of travel planning is accessible transportation, whether air, rail, or road. Below are some tips to help make the traveling part of your getaway with your care support go as smoothly as possible.
By Plane:
- Contact the Transportation Security Administration (TSA) – TSA Cares was put in place to help travelers with disabilities get through security as easily as possible. They offer a call center that is open weekdays 8 am-11 pm ET, and holidays and weekends 9 am-8 pm ET, and they can be reached at 855-787-2227 or by email at TSA-ContactCenter@tsa.dhs.gov , and it should be done at least 72 hours before the scheduled departure.
- Call Customer Service – Before purchasing airline tickets it is recommended that you call customer service for that specific airline. This will allow you to inform customer service that you are a person with a disability and that you and your care support will need assistance. It is essential to let them know you are a wheelchair user because you most likely will have to use an aisle chair provided by the airport.
- At the Airport—To help reduce hectic and stressful air travel with your caregiver, you should arrive early and have all essential documentation ready when it comes time to go through airport security. When you arrive at your specified gate, you should tell the person working at the airline counter if you and your caregiver need extra assistance to board the plane.
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By Train:
Call Customer Service – Whether traveling by Amtrak or another line, you should contact customer service beforehand to explain your needs and that you are traveling with a caregiver. Some questions to consider:
- Will railroad employees assist you when boarding and disembarking?
- If you cannot climb steps between the platform and the train, is there a lift or an alternate way to board? Will it accommodate a person using a wheelchair or other mobility device?
- Is there a size restriction for mobility devices? Ask if you can reserve a wheelchair-accessible space on the train.
- Does the train have transfer-accessible seats with nearby storage for a wheelchair? (If so, book early as spaces are limited.)
- Are there discount fares for older people or those with disabilities?
- If traveling a distance on Amtrak, ask if roomettes are available on the train. These small, cleverly designed rooms have seats that reconfigure into a comfortable single bed with a drop-down single bed directly above, a toilet and a sink. There are a limited number of accessible bedrooms, so book as far in advance as possible.
Working group member and disability advocate Lisa Cooley shares, “Amtrak has a travel discount for passengers with disabilities who travel with an attendant. All the traveler has to do is make their reservation for travel and bring some proof of disability, such as a doctor’s note, disability ID for transportation, or a membership card from a disability organization or a Medicare card.”
By Automobile:
For longer distances, you and your caregiver may want to consider leaving a day or two ahead. If the drive is over six hours, consider staying at a hotel to give you both time to rest and relax. The route should be decided beforehand, especially if you want to stay at a hotel to break up long-distance travel.
Working Group member and Chapter Leader for the Greater Orlando Spinal Cord Injury Network, Bob Melia, is a power chair user who has done his fair share of air travel. Traveling with his children and wife is quite different compared to when he was young and single.
“Do your due diligence at the front end, whether it’s a cruise, a hotel room, etc., every little detail matters,” he says. “Make sure that where you’re going is what you expect and expect the unexpected.”
“If you plan to use public transportation, familiarize yourself with the rules and expectations around traveling with a personal care attendant (PCA). While a fixed route bus may not have a free or reduced fare for attendants, paratransit should include a process for traveling with your PCA free of charge,” says Katy Carroll.
Keep Your Care Support in Mind
While traveling, it is important that your caregivers enjoy their time too. “It shouldn’t be work 24 hours a day, and your caregivers will need a break,” says Bob. “Communicate and have a good understanding with your caregiver of when you’re going to need help and when you’re not going to need help so that they can enjoy their trip and help you out as well.”
Working Group Members Ron Hull and Sarah Goldman have had two caregivers accompany them on extended travel. This allows each provider a day off to explore and enjoy their time. An extra set of hands is always helpful, especially if a lot of equipment is needed for the trip.
“I have traveled many miles over the years, and as a quadriplegic, I require quite a bit of equipment and supplies when I travel,” says Ron. To help his caregivers with prepping and packing, he creates a checklist of absolutely everything that he will need to be packed, along with the quantity.
Katy suggests building in sufficient time to achieve your goal and meet everyone’s needs. Consider what activities you are doing and whether you should build time for rest or restroom breaks. She stresses the importance of traveling with the basics.
This includes:
- medication
- disposable chuck mats
- sterile gloves
- catheters
- wipes
- sandwich bags
- poncho
- utensils for eating
- plastic or reusable straws
- menstrual products
- extra underwear or clothing
- hand sanitizer
- charging cable
Katy also recommends bringing a list of medications, physician contact information, emergency contact numbers, and health insurance information. It is imperative to carry medication on the plane in case your luggage is lost.
Finding a caregiver for travel can be complicated, but you can help plan accordingly by being upfront and honest about your specific needs and expectations. If you are not fully confident about a caregiver, you can take a shorter local trip to see if it is a good fit before tackling a trip hundreds of miles away.
Do not compare this vacation with those of the past. When you fall into this thinking pattern, you often focus on what is different or what you can’t do. Knowing your rights, being prepared, and advocating for yourself will be the best way to help ensure your trip goes as smoothly as possible.
Think of each vacation as a new chapter and a new adventure in your life.
Additional Resources
United Spinal:
Care Support Webpage
Best Tips and Strategies for Finding and Hiring PCAs
What We Want Our Caregivers to Know
United Spinal Association’s Care Support Webinar: Finding, Hiring, Training, and Retaining Care Support Professionals
United Spinal’s Membership Publication New Mobility:
Traveling With and Without a Caregiver
How to Plan (or Not Plan) an Accessible Vacation
Online Resources:
Tips for Traveling with a Personal Care Assistant (Wheelchairtravel.org)
Summer Travel Plans for Caregivers (Today’s Caregiver)
Traveling with Your Loved One (AARP)
Collaborate with advocates from across the United States to identify policy and advocacy initiatives to improve care support services by joining our Care Support Working Group. The disability community and our caregivers need your help to solve this national crisis.
