Boy with down syndrome surfing with caregiver

Tips for traveling with a loved one with a disability or special needs

Throughout the year, there are many busy times for family vacations. Some families delight in taking impromptu escapes, but if you’re traveling with a family member who has a disability or special needs, you may not be able to simply pick up and go. However, with planning, a vacation full of discoveries, fun, and (ultimately) fond memories can be yours.

“Sometimes it’s easier to avoid things that make you anxious,” explains Joan Tucker, a financial advisor with Voya Financial Advisors and a parent of an adult child with special needs. “But don’t avoid travel; do it! Frequency reduces anxiety. It gets easier each time.”

Here are considerations to help you get started.

Before you go

Consider your child’s strengths and sensitivities regarding interacting with strangers and traveling by car, train, plane, or ship. Does he or she require a strict schedule, have a complicated medication regimen, or use medical devices or equipment? Are dietary restrictions, loud sounds, or crowds a concern? Taking the steps below can help you visualize your child’s needs in advance and help you plan the best vacation for your family.

  • Use alternate modes of transportation to avoid crowds.
  • Find resorts, hotels, and cruise lines that offer extra services for people with disabilities or special needs, such as personal assistants or meals that meet dietary restrictions.
  • Consider working with travel agencies that specialize in bookings for people with disabilities and special needs and can help open your eyes to vacation opportunities, as well as potential challenges.
  • Investigate travel versions of medical equipment that your child may use. You may need a medical certificate for certain equipment, such as a portable oxygen condenser, that will be used on a plane.
  • If traveling by air with a service animal, you may also need documentation to show proof of need.
  • Documentation also may be necessary to prove a disability for early boarding on certain airlines.
  • If traveling outside the United States, remember that U.S. laws, including the Americans with Disabilities Act (ADA) and its regulations, the Health Insurance Portability and Accountability Act (HIPPA), and those regarding service animals will not apply. Learn as much as you can about how these issues are handled in the country you’ll visit.
  • Check with your health insurance carrier to understand your policy coverage while traveling.
  • Contact the Transportation Security Administration’s “TSA Cares” program before your trip to learn about separate screening lines for people with disabilities and special needs, special seating on airlines, early boarding procedures, personal assistance at airports, traveling with a wheelchair, and more.

Christine Brookins, who, like Tucker, is a Voya advisor and has traveled with her son who has special needs, suggests, “Taking a dry run at the airport can help a parent foresee what might cause complications and is a good experience for the child.”

Some airlines and some major U.S. airports participate in practice travel programs that allow families to experience the activities at an airport and on a plane without actually taking off. These programs help families, as well as airport and airline staff, learn about the stimulations and triggers that may cause issues during actual flights.

Additional travel tips

  • Introduce travel to your child when he or she is young to build familiarity with it. Start small, and travel during non-peak vacation times before venturing on a trip.
  • If behavioral problems are likely on long road trips, seat your child away from the driver for safety’s sake. Seat someone near the child to keep him or her occupied. Snacks and games can also help.
  • Pack all medications and medical supplies/equipment together for easier screening at airports. Label equipment for proper identification by TSA personnel, which will expedite the screening process. Pack extra doses of medications in case your return home is delayed.
  • Some hotels or resorts offer a personal assistant. “Get to know the staff and establish a warm rapport with them.” suggests Tucker. “Let them know you understand the stress your stay may cause, that you appreciate their collaboration, and ask how you can meet halfway.”

Financial, medical, and legal preparation

It’s always a good idea to have a sound financial plan. If you have a family member with a disability or special needs, you’ll especially want to consider the following planning to-dos before you travel.

  • Permission for access to medical info – If your child is eighteen years old or older, he or she is legally recognized as an adult, which means that you don’t have authority to make medical decisions or access medical information about him or her. This can be particularly problematic if your child needs medical treatment or an emergency occurs while traveling.
  • Copies of medical & legal documents – It is a good idea to have documentation in electronic format, such as living wills, health care proxies, durable medical powers of attorney, proof of legal guardianship, financial powers of attorney, and other such records, along with doctors’ names and contact information and certain medical history, when you travel.
  • Trip cancellation – When you plan to travel with someone with a disability or special needs, there’s always the risk that you’ll have to change your plans. Consider purchasing refundable airline tickets in case your trip is cancelled. Travel insurance is also an option, but check to see which risks are covered before making the purchase.
  • Special Needs Trust (SNT) – If you have a funded SNT established for the benefit of a person with special needs, remember that funds can be used to pay for transportation, lodging, food, a skilled caregiver, and certain travel expenses for that person (not for an entire family). “If you find your child loves to travel, an SNT can continue to finance vacations for your child after you’re gone,” says Brookins.
  • ABLE accounts – Funds in an ABLE account can also be used to pay for vacations, provided the vacation is deemed to improve the health, independence, or quality of life of the person with special needs.
  • Letter of Intent – A letter of intent is a living document that contains up-to-date personal, social, medical, and financial information about a person with a disability or special needs, as well as that person’s behavioral triggers, how to avoid them, and remedies for them.

Final thoughts

Finally, know that if traveling is simply not in the cards for your child, it’s okay to plan one vacation for the family and a separate fun, individually tailored "staycation" for your child. It could be just the thing to give your loved one a lifetime of fond memories. And a getaway for the family can help revive you all for the usual challenges of daily life.

Helpful travel resources

  • Local chapters of national organizations (such as Easter Seals, The ARC, etc. and even travel associations like AAA) may provide travel-related resources and advice and can also help you connect with other families in your region who can share their traveling stories, advice, and recommendations.
  • Wings for Autism, a program developed by a Boston chapter of The ARC, in association with the Massachusetts Port Authority, sponsors events held at major metropolitan airports throughout the year that allow individuals with special needs and their families to experience arriving at the airport, checking in, checking baggage, going through the TSA screening process, boarding the plane, preparing for take-off, taxiing the runway, and exiting a plane.
  • Autism on the Seas provides services to cruise lines to help families and individuals with special needs have expedited boarding, private muster drills, reserved show seating, meals that meet dietary needs, respite times for family members, adaptive activities, and more.
  • The Transportation Security Administration (TSA) provides special assistance to people with disabilities and special needs during the screening process, including medications, equipment, service animals, and more. 855-787-2227
  • The Air Carrier Access Act prohibits discrimination against people with disabilities and special needs when they travel by air.
  • State government and tourism websites for states you plan to visit provide information about travel regulations, accessibility, and programs for people with disabilities and special needs who travel. Search the sites using terms such as "special needs traveling."
  • State and national park websites have information about accessibility and other concerns related to disabilities and special needs, as well as discounts.
  • Voya Cares helps people with special needs or disabilities and their caregivers with planning. The Voya Cares website provides helpful resources for families.

This information is provided by Voya Cares for your education only. Neither Voya nor its representatives offer tax or legal advice. Please consult your tax or legal advisor before making a tax-related investment/insurance decision.