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Traveling with Disabilities

Anne M. Becker, MS, RN, CNS

Miriam R. Breslauer, BS, MS

Occupational therapy courses are accredited by AOTA and are accepted by the NBCOT Certification Renewal program. For information specific to this course, click here. Physical therapists—please click here for accreditation information.

Traveling beyond a person's community, for business or pleasure, is often part of a cherished lifestyle. It can be both invigorating and a respite from the humdrum of daily life. For people traveling with disabilities, however, it can be full of challenges. Disabled travelers face a host of problems, both in planning and during the trip, that include:

• Transporting or obtaining required medical equipment
• Security screenings
• Choosing the mode of transportation
• Availability of accessible lodging
• Access on and off vehicles
• Adequate nutrition (Fenner, 2007)

While laws such as the Air Carrier Access Act (USDOT, 2007) have been implemented over the years to improve travel conditions for disabled persons, local and international issues still create unexpected difficulties for the disabled traveler. This course presents information for healthcare professionals who are assisting people with disabilities to overcome travel barriers.

Healthcare professionals may assist a disabled traveler in planning a trip based on special medical needs, or they may actually travel as an assistant with a disabled person (Routson 2007). Although healthcare professionals have traditionally functioned as advocates to improve health policy conditions, both in the hospital setting and in the community, they may not be familiar with the many issues disabled persons face—even in making a simple trip to a medical center. Frequent travelers, on the other hand, may not routinely consult their healthcare professional about travel issues unless they have had trouble on a recent trip.

The first step in determining the challenges a disabled person may face when traveling is to review their known disabilities and symptoms. This list may be a work in process, since people may not realize that a symptom could seriously affect them when traveling until they have addressed the more obvious issues such as traveling with a personal wheelchair.

If clients are mentally and physically capable, the first step in working with them on a list of their symptoms and disabilities as well as the coping mechanisms they currently use when traveling. If the client is not able to cooperate in this, you collaborate with their primary caretakers or family members, as authorized by the client under United States HIPAA regulations or other appropriate government regulations (USDHHS, 2007).

The second step involves planning for the trip. Many healthcare professionals are asked to assist with immunizations or local transportation issues such as access to the paratransit (medical transportation) system. It is less common to be involved in the lengthy process of planning a cross-country or international trip, but travel nursing is a growing specialty (Routson 2007). If you have been hired to accompany and assist a disabled traveler, the journey will be made easier for both if you are included in ordering transportation tickets, accommodations, and any special medical equipment.

The goal is to complete the trip with minimal unexpected stress for both the traveler and the healthcare professional. For example, if the paratransit system has inconsistent delivery times and the traveler is late for an appointment, you should acknowledge this and possibly follow up with the transportation company to prevent future conflicts. When accompanying the traveler on a longer trip, the use of proper tools and planning may help both of you to cope if there is an unexpected medical emergency.

Finally, you should always follow up with the traveler about any aspects of the trip in which you were involved. This may range from asking about the trip at the next appointment to doing a written evaluation of the assignment. The traveler should also provide feedback so the next trip will be easier to plan.

As a way of demonstrating the hazards of travel for people who are disabled, the authors have chosen to introduce Maggie (mother) and Dana (daughter), whose travel is complicated by a disability that is not evident or recognizable to many people. This presents additional challenges to their travel.

Maggie and Dana have hypokalemic periodic paralysis (HKPP) with permanent muscle weakness. This rare autosomal dominant genetic disorder affects the ion channels supplying the muscles of the body. Maggie lives more than 2000 miles from her daughter Dana, but travels frequently to see her and also travels for pleasure.

Dana would like to travel to see her mother, but she has multiple chemical sensitivities and food allergies that make travel extremely challenging. As Maggie's leg muscles get weaker, many questions arise about how to plan future trips. She has asked for help in creating a medical documentation file and travel plan.

When Maggie told her physician that she wanted to plan an international cruise, the doctor was concerned about whether she could manage it with her level of physical problems. Maggie reassured the doctor that she usually flies with a companion or is met by her family at the destination airport. The use of a medical summary sheet for periodic paralysis, carefully documenting Maggie's current medications, and the submission of a medical notification form to the cruise line were all necessary items on Maggie's planning list.

HKPP is either an inherited or caused by a spontaneous gene mutation that presents as intermittent episodes of muscle weakness and/or paralysis alternating with periods of normal muscle function. The episodes of paralysis are temporary, but can lead to permanent muscle weakness. People with this disorder experience very low, or acute swings in, blood potassium levels that cause episodes of weakness. Attacks usually begin in adolescence and continue through adulthood. These attacks may mimic hypoglycemia or a stroke, and many patients are misdiagnosed until a familial connection is made. (Dana was diagnosed in her twenties, several years before her mother was diagnosed.) The paralysis attacks may last for hours or days with frequency ranging from daily to yearly (Periodic Paralysis News Desk, 2007).

A person with HKPP may experience a variety of symptoms and complications such as: weak and flaccid extremities, sensitivity to temperature changes, muscle aching or pain, which is usually associated with certain foods (particularly those high in carbohydrates and salt), exercise, and arrhythmias. Weekly supervised exercise may be needed to prevent muscle atrophy, but can also exacerbate attacks—requiring an increased potassium dose just to walk continuously for more than 5 minutes. One of many potential complications associated with HKPP is fractures, which can occur during a fall.

One of the unique features of HKPP is that a person may become temporarily unresponsive while fully conscious of the events going on around them (Periodic Paralysis News Desk, 2007). Maggie and Dana both experience this symptom and they are acutely aware of both positive and negative comments about their paralysis attacks, especially those made by healthcare professionals. They have been accused of faking the symptoms to obtain attention even with medical evidence to the contrary.

Treatment of HKPP is focused on the relief of acute symptoms and the prevention of further attacks. Types of treatment include routine potassium administration orally or emergency intravenous therapy (in a crisis or a prolonged attack); a low-carbohydrate, low-sodium diet; and medications including acetozolamide and/or potassium-sparing diuretics; plus avoidance of alcohol (Periodic Paralysis News Desk, 2007).

Maggie and Dana both require daily supplements of potassium and must monitor their diet to prevent excessive carbohydrate and sodium intake. They have used the Quality of Life Assistant forms from the Periodic Paralysis News Desk (2005) to document their daily medication regime, food and beverage triggers, and tolerance levels for daily activity.

DISABILITIES THAT AFFECT TRAVEL

The following list identifies a number of major and minor disabilities that may affect traveling (Job Accommodation Network, 2007):

• Lowered physical abilities.
  This includes impaired mobility with
• Gait abnormalities
• Partial or minimal mobility and
Alternative limbs and organs such as
• Prosthesis
• Metal pins or plates holding bones together
• Pacemaker (heart or stomach)
• Lowered cognitive abilities
• Speech deficiencies
• Vision deficiencies
• Hearing deficiencies
• Impaired thinking process
• Impaired memory
• Lowered social abilities
• Impaired concept of money
• Impaired understanding of social cues or orders
• Impaired concept of boundaries
• Anger upon being questioned

Each disability brings a different challenge. For example, Maggie and Dana have to plan for multiple problems related to their disabilities. Maggie's issues are primarily due to lowered physical abilities. She not has to only deal with issues of paralyzing at any point of her journey but also has visual problems that affect her depth perception. Dana's issues include lowered cognitive, physical, and social issues. She has to deal with periodic paralyzing (lowered physical abilities), brain fog (lowered cognitive abilities), food allergies, and sensory issues when traveling.

Lowered Physical Abilities

There are many traveling challenges for people with impaired mobility. They often have problems moving around in strange locations. These problems can range from using crutches for a twisted ankle to requiring a specialized wheelchair due to quadriplegia. Airplane travelers should be aware that cabins are only pressurized to 5,000 to 8,000 feet, which can exacerbate respiratory and cardiac conditions (Fenner 2007). When planning a trip, the traveler and assistant should assess all potential mobility needs in advance.

Common mobility devices used by travelers include canes, crutches, walkers, and wheelchairs. Additional specialized equipment required by the traveler for the trip that cannot easily be carried by one person can be preshipped or rented at the destination site. For large or bulky equipment, the traveler should either have an assistant or be willing to ask for assistance. Persons weighting over 250 pounds can obtain a sturdier version of a mobility device from a medical supply store.

The size and shape of the mobility device must be considered for ease of storage when traveling. Collapsible canes will fold in thirds or quarters, making them small enough to stow in carry-on luggage, and some specialty canes have built-in flashlights or other helpful gadgets (Norman 2007). Crutches and braces require custom fitting and are often made of metal. Power wheelchairs and scooters are now a popular method of assistance, especially at popular vacation destinations. Power chairs are difficult to transport when traveling via airlines, but can be rented by the day or week and delivered to the destination hotel (Scootaround Mobility Solutions 2005).

A checklist can also be helpful at the destination. The list should include any special equipment and any other requirements for individual needs. Some types of specialized equipment are (Albrecht, 2007):

• Oxygen tanks
• Wheelchair or scooter
• Luggage
• Food and freezer chest
• Bi-pap machine
• Blankets and bed sheets or a sleeping bag
• Special lights, noise-canceling headphones, or weighted blanket
• Laptop

IMPAIRED MOBILITY

A prior stroke, a shortened leg, or gait abnormalities such as ataxia may cause a person to walk with an uneven gait. These people often need more peripheral space when they walk because they swing their legs and arms widely to maintain balance. The wide-swinging gait may be a problem in a crowded space such as an airport or conference center. The person may not be able to walk through a security screening area without setting off the alarm system, triggering a personal security check. Walkers with uneven gait may also tire easily when trying to deal with crowds or long distances such as an airport concourse or a multi-level museum.

Numerous medical conditions cause partial mobility. It is common for a person with hip or knee injuries to use a cane or walker except when trying to navigate a crowded facility such as an airport; this type of situation may require wheelchair assistance to prevent unexpected falls. Balky doors may also present a problem if the person has weak muscle function; restrooms sometimes have heavy fire doors that preclude easy access. Electrically controlled doors provide the best access for disabled users.

Persons dependent on a wheelchair require fully handicap-accessible facilities. They may need assistance transferring to a seat in any kind of public transportation (taxi, bus, plane). Access may be limited by the steepness of the ramp (incline needs to be one inch for every foot of steepness) (USDOJ, 2007). When traveling out of their home area, a wheelchair-dependent person may need an assistant to access ramps, elevators, and vehicles that are not fully operational or accessible. For example, subway systems in both New York City and London have poor wheelchair access at some stations (Twardowski & Twardowski, 2007).

ALTERNATIVE LIMBS AND ORGANS

Military personnel and people who have long-term diabetes may have missing limbs due to amputations. They may appear to have full mobility, but be unable to go through a security screener without setting off the alarm system due to the metals used in their artificial limbs. A metal currently used to pin a broken leg is titanium, which usually does not set off a metal detector, but older pins or plates may be made of material that routinely sets off the detector. The traveler should know these materials and carry a physician's note if they may cause inadvertent security alarms (USDOT, 2004).

As technology continues to develop, some prostheses may be so novel that any breakdown of the pieces cannot easily be repaired except at a specialized facility. The traveler may need to bring back-up parts or a second prosthesis (Fenner, 2007). This limits other luggage, and needed repairs can change the whole tenor of the trip. For example, a recent contestant on a reality show had no way to repair the oil leak in her mechanical leg and this significantly altered her mobility.

Pacemakers can malfunction, especially near the end of their battery life. Travelers need to anticipate this potential problem by carrying emergency medical instructions on their person. Travelers with heart pacemakers are usually familiar with these concerns. Patients with gastroparesis, commonly caused by diabetic complications, may have a pacemaker for their stomach and not be aware of potential problems.

Lowered Cognitive Abilities

Individuals with lowered cognitive abilities often have problems making themselves understood, understanding others, or figuring out where to go (Job Accommodation Network 2007). It is important that people with cognitive disabilities have a detailed list of what they need to accomplish at each location of their trip. This list will help the individual remember what they need to do and when they need to do it. Copies can be handed to others to ask for help or clarification of misunderstandings, and it can soothe a disabled individual if they get frustrated (as long as they remember to refocus on the list). This list should include:

• Destination information
• Contact information
• Itemized contents of all luggage
• Prompts for any special needs
• Tasks to be completed upon arrival

Destination information must include an address and phone number for each stop. This is especially important when using public transportation such as a taxi or paratransit. Taxi companies may have cabs designated as accessible, but they are not always available (Twardowski & Twardowski 2007). Numbered or color-coded index cards are useful tools to hand to a driver. In addition to the destination, these cards should include the traveler's name and home contact information. With the popularity of Internet-based reservations, it is fairly simple to print out addresses and hotel confirmations that can be carried by the traveler in a folder that fits in carry-on luggage or in a large purse. The traveler should also have home address information both inside and outside all pieces of luggage in case they are misplaced.

Contact information includes a list of people important to notify when the destination is reached. If a local contact person is expecting the traveler, list that name and information first. Then include a family member or contact person in the home area to reassure them that the traveler had arrived safely. Another advantage to this list is in case of an emergency situation. If the traveler cannot clearly state who to call, the information on the contact list is a priceless asset.

A list of items brought with the person on the trip should include available space to list new purchases to facilitate easier repacking upon leaving. Compartmental packing in the suitcase also helps keeps the contents organized. Commercial products, such as those used to organize a hiker's backpack, are readily available. These may include pouches for shirts and slacks or cosmetics. The contents can also be packed by outfit (underwear through outerwear) and may even be labeled as to which day the outfit is intended to be worn. The traveler may benefit from a diagram or photos of the original positions of items in the suitcase. The list should also include any carry-on items for planes. Travelers should pack their medications in carry-on luggage in case of failed delivery of baggage, and this will affect both the space available for other items and the weight of the luggage (Albrecht 2007).

Other items the individual may need to remember or request help for on the trip might include medications or information on a local pharmacy that would refill an out-of-area prescription. Considering the variety of insurance plans and coverage available, especially in the United States, the traveler needs to be familiar with their specific insurance coverage. Some insurance provides only domestic coverage, and an additional insurance policy may be needed for foreign travel (Fenner 2007; Princess Cruises 2007).

For the healthcare assistant, tasks to complete upon arrival may range from unpacking the suitcase at a family home to registering at a hotel to obtaining the rental power chair from the bell captain's desk. The list might prioritize the first five things the assistant needs to do at the destination. A reminder to eat some food or take medications may be a high priority item. If the destination is a hotel or motel, the list may need to include details on how to register. Even if the traveler has a companion, many people prefer to maintain control of their environment as much as possible, and this list can be used to collaborate with the companion in completing the expected tasks.

SPEECH DEFICIENCIES

A person's speech may be altered due to a physical deformity (cleft palate), medication, or neuromuscular problems (stroke). Sometimes the problem is intermittent and becomes worse when the person experiences a stressful event. When traveling to a new area, different languages or dialects may increase the challenges the traveler will have communicating with other people. Giving information to a cab driver may become very difficult unless the traveler has clearly written information available. During the planning phase, it may help to create a short list of common phrases translated into the language of the destination. For example, if the person is traveling to Beijing, China, phonetically spelled-out phrases including "please" and "thank you" in Mandarin will facilitate communication.

VISUAL DEFICIENCIES

Altered vision may range from misplaced glasses to permanent blindness. Travel plans might also need to include transportation for a service animal (Albrecht, 2007). Travelers with color blindness may have trouble recognizing or reading signs for freeway off-ramps. Temporary or permanent depth perception can challenge a traveler immensely, especially in crowded situations such as boarding an airplane or a bus. Some neuromuscular problems cause ptosis of one or both eyes, altering depth perception. A person with depth perception problems may have trouble stepping over the floor gap between the ramp and the plane entrance, which then slows down boarding time. This puts the traveler at a potential risk for injury when other passengers try to rush by.

HEARING DEFICIENCIES

Decreased auditory acuity is commonly experienced by older travelers, but a person can also be over-sensitive to sound. A poorly functioning hearing aid can cause significant problems for the traveler; the assistive device may even be affected by radio transmissions. Altered noise levels can cause interference with person-to-person communication, especially in crowds. For example, people with auditory disabilities may have problems understanding directions in an airport. Also, security personnel may address passengers from behind, but the person may not hear them or the metal detector alarm. This could be easily misinterpreted by security personnel and present a potentially serious problem that could delay the traveler's journey.

Hearing deficiencies are addressed in the United States Department of Transportation (2004) New Horizons brochure. "Any carrier that provides telephone service for the purpose of making reservations or offering general information must provide comparable services for hearing-impaired individuals, utilizing telecommunications devices for the deaf (TDDs), or text telephones (TTs)" (p. 5). The brochure also includes information about onboard communication and safety briefings.

IMPAIRED THINKING PROCESS

Any person who is tired may experience some impaired thinking, especially after a long day of travel, which can affect physical stamina as well (Fenner, 2007). When a person has an underlying cognitive problem, tiredness can make social interactions even more difficult. Registering for a hotel room may become a major challenge. The traveler may forget they have the information in written format. Even with written information, the person must be able to double-check the room rate before signing in or they may be charged a different rate than they had budgeted. Another high-risk time is when transferring to a new mode of transportation. If travelers have to use a taxi to the airport, transfer at least once to reach their destination, and then hire another taxi, they can easily become confused or miss their connections.

IMPAIRED MEMORY

A common problem for older travelers experiencing the beginning stages of impaired memory due to a dementia disorder is misplacing a companion in a crowd (Wicklund et al, 2007). The person may not even be aware there is a problem until they are lost in an unfamiliar setting such as a crowded bus station. The traveler should wear a piece of distinctive jewelry or clothing that is not easily removed. The companion and a contact person can then provide a description of it to security personnel.

Lowered Social Abilities

Individuals with lowered social abilities often have problems understanding what is going on around them. They interpret social situations differently than others perceive them and may not be able to interface easily with the people around them (Job Accommodation Network, 2007). It is recommended that an individual or group with social disabilities have an assistant to help smooth over communication differences. If an assistant is not available, it is vital that the individual's needs and communication issues are clearly written down in an obvious place.

This documentation should identify the individual's disability and recommended strategies for strangers interacting with the traveler. Such travelers are much more likely to be exploited, since (1) they have a tough time realizing that there is a problem in the first place, and (2) they have trouble making another person understand that there is a problem (Flyer Talk Forums, 2007). Some examples of strategies:

• Provide a word or hand signal that the traveler understands for the commands to back off, listen, or follow someone. List these words or hand signals on the documentation so that the helper can use them to break through to the individual if they don't seem to understand anything else.
• Prepay overnight stays. Have food and amenities charged to the room bill. If an assistant is traveling with the person, the assistant should understand the budget for the trip.
• Provide a phone number to someone who is familiar to the traveler and can say things to mitigate the situation: a calm voice for the individual, solutions for the assistant, and a general emergency contact person.

IMPAIRED CONCEPT OF MONEY

Some people with developmental disabilities or memory impairment do not have a good grasp of monetary matters. They often do well with preset quantities identified by what the amount will purchase, or money arranged in a certain pattern (tens folded to the right, twenties folded to the left). Otherwise, they need to travel with a companion, especially when dealing with foreign currencies. Storing foreign currencies separately will assist the traveler when using it for local purchases. This also makes the currency easier to exchange at the end of the journey.

IMPAIRED UNDERSTANDING OF SOCIAL CUES

Persons with attention deficits or those with visual or hearing impairments may have trouble communicating in a new environment. This can cause the traveler severe distress, especially when interacting with security personnel or with service personnel about problems with their travel arrangements or accommodations. These travelers would also face challenges in other cultures, especially those whose communication depends upon nuances or nonverbal cues such as facial expressions. If the condition is severe, it is essential to plan strategies to prevent confusion or confrontations before leaving home.

IMPAIRED CONCEPT OF BOUNDARIES

Many cultures have a preset understanding of acceptable boundaries. A person assuming that their own culture's boundaries are accepted anywhere they travel could experience conflict when trying to communicate with a person of another culture. For example, a child who is used to greeting adults with a hug may become confused when adults act offended by this.

A disabled person with sensory issues may need extreme physical touch or, conversely, to avoid even the lightest of touches. An individual with extreme physical touch needs is much more likely to touch a stranger aggressively and violate their personal space. An individual sensitive to the lightest touches may have a meltdown in a crowded area if touched when it wasn't expected. Chemical sensitivities can stimulate such a reaction if, for instance, the traveler is allergic to the fabric of the glove touching her skin. Although these are physical disabilities, they appear to others as lowered social abilities.

ANGER UPON BEING QUESTIONED

Any person who has anger issues has the potential to experience confrontations with security personnel or other persons in authority. In addition, some medical disorders cause angry outbursts when a person feels threatened or stressed. The traveler and any assistant should be well aware of this issue and plan strategies to cope with unexpected stress such as a delayed train arrival time.

PLANNING THE TRIP

Medical Documentation Travel File

A travel file containing medical documentation should be prepared by the traveler with the assistance of any traveling companion(s) and healthcare providers. All medical documentation files should include, at a minimum:

• Diagnosis
• List of current medications
• Contact information for reaching family and healthcare provider

Additional information may include a brief paper (no more than one or two pages) summarizing the traveler's medical issues and the basic emergency care needed for their specific disorder. The traveler should be wearing a medical alert tag, but some people prefer a necklace over a bracelet, so the site of the medical alert tag is noted in their paperwork (Fenner, 2007).

Medical emergencies can occur anywhere, but if a person is traveling in a foreign country their insurance may not cover emergency care or medical evacuation to a facility that can handle that individual's disability. For this reason, vacation insurance is a must for disabled individuals. MedicAlert bracelets list the most immediate health concern and state where to find more medical information, but full medical information should be carried as a precaution on the person at all times. If appropriate, the information should be translated into the language of the country being visited. Another option is to include a website for emergency personnel to access, even if it is only in English.

The following list maybe helpful in planning the medical documentation file:

• A list of contact people and their phone numbers in case of emergencies (family, person at destinations, healthcare professional).
• A letter from the traveler's primary healthcare practitioner, with name, title, and address, stating the traveler's diagnosis and any unusual treatments.
• A list of current prescription medications, vitamins, and complementary and alternative medicines (eg, echinacea).
• A prescription for current medications, especially any unusual medications that may be difficult to replace if the current doses are lost or stolen.
• Authorization for oxygen or dialysis therapy (must be pre-ordered, especially for airplanes and cruises).
• A summary of unusual symptoms or treatments for rare disorders.
• A list of all allergies, especially allergies to medications. If a food allergy may impact emergency care, it is important to list which standard emergency treatment medications are not safe (eg, a corn allergy eliminates most common IV solutions).
• A list of all immunizations and surgeries, including year of treatment. Most emergency departments do not have access to a central patient database like some HMOs have developed. Having this specific information prevents the traveler from struggling to provide a general history when acutely ill.

The task of developing the medical information file may seem overwhelming at first. You can reassure the traveler to see it as a work in progress. The most important information should be made as concise as possible, since there is less chance of losing the information if it is on one type-written page.

ADJUSTING MEDICATIONS FOR TIME ZONES

One of the most confusing parts of any trip that covers more than one time zone is how to adjust the medication schedule to maintain therapeutic values of each drug. The traveler must not only factor in the time zone difference, but how long a trip through the time zones may take. If the trip is by ship, train, bus, or private car, there will be fewer adjustments than by airplane.

Each person should identify the best times for their medication therapy. Medication schedules ordered for a specific time of day, such as a sleep aid, should be discussed with the traveler's primary physician to prevent incorrect dosing based on time zone differences. A plan compensating for altered meal times should also be created if any of the medications must be taken in conjunction with food. The following table includes suggestions for adapting a medication schedule for domestic and international travel.

TABLE 1

ADJUSTING MEDS FOR TIME ZONES

Situation Traveling across three time zones—from California to New York [Pacific Standard Time (PST) to Eastern Standard Time (EST)]
Medication	Dose/ frequency	Current times	Destination	Return trip
Klor Con	20 mEqs twice a day	7 am & 7 pm PST	Day 1: 8:30 am & 8:30 pm EST Day 2: 7 am & 7 pm EST	Day 1: 5:30 am & 5: 30 pm PST Day 2: 7 am & 7 pm PST
Lisinopril	5 mg once a day (pm dose)	7 pm PST	Day 1: 8:30 pm EST Day 2: 7 pm EST	Day 1: 5:30 pm PST Day 2: 7 pm PST
Situation Traveling from San Francisco (PST) to London (GMT) [an 8-hr time difference, and a 10- to 12 -hr flight]
Medication	Dose/ frequency	Current times	Destination	Return trip
Klor Con	20 mEqs twice a day	7 am & 7 pm PST	Day 1: Extra dose 12 hours after previous dose, then 7 pm & 7 am GMT	7 am & 7 pm PST
Lisinopril	5 mg once a day (pm dose)	7 pm	Day 1: Extra dose may be needed at 1 pm GMT, then a second dose at 11 pm Day 2: 7 pm GMT	Day 1: 5 pm PST then Day 2: 7 pm PST

LIQUID MEDICATIONS AND SECURITY

According to the latest airline regulations, passengers may take liquids on a flight if they are in containers of no more than 3 ounces and in a sealed plastic 1-quart bag (USDOT, 2004). Maggie and Dana both require a 16-oz dilution of their potassium medicine, which is always challenged by security even when properly labeled. The solution to this problem has been to carry a Labeled Medication Letter from their primary care physician that includes the language:

It is imperative this patient has this medication with him/her at all times.
Without treatment, this patient is at great risk for injury.

Maggie has also tried drinking the last of a dose just before the security screen, then asking the wheelchair assistant to stop at a shop to obtain a new water bottle after the security screen. This is better received by security, but may cause a delay in getting to the gate, which can be stressful for the traveler.

CHEMICAL SENSITIVITIES, FOOD ALLERGIES

Some people with disabilities also have chemical sensitivities and food allergies. Anticipating problems will alleviate some of their travel stress. Both of these conditions can add quite a bit to a traveler's luggage if special food or clothing is required to prevent anaphylactic reactions. An Epi-Pen, if prescribed by the healthcare provider, should be carried in the person's purse or carry-on luggage. This medication should also be highlighted in their medical documentation travel file, and can be brought through airport security with a Labeled Medication Letter.

People with chemical sensitivities have problems being around others who are wearing perfumes, scented shampoos, or even deodorant. They may have become sensitized to various common environmental stimuli and now respond with symptoms similar to an allergic reaction; this is possibly due to an autoimmune injury (Multiple Chemical Sensitivities, 2007). If the traveler is seated near someone using strong fragrances, they may have to request a seat reassignment, which can be difficult on a crowded plane, train, or bus. Chemical sensitivities can be so disabling that the individual needs to bring all their own bed sheets and towels, because the detergents used by hotels or other people may contain chemicals to which they will react.

With food allergies, eating out is not always a safe option. That means that travelers must bring all their own safe food in a portable refrigeration unit or buy safe food at the destination and use a kitchen in which they can safely cook their meals. The Food Allergy News (2007) recommends a "chef card" listing safe ingredients for common dishes that may help the traveler negotiate their meal at a restaurant. Having an accessible microwave oven has helped some travelers with food allergies feel more comfortable planning meals. Buying and cooking safe food after spending all day traveling can be difficult, especially after a long trip.

People traveling with food allergies face an additional challenge at security checkpoints. They may have to travel a long distance by plane and carry certain types of food with them due to their dietary restrictions. Carrying this food on the plane increases carry-on luggage and may be challenged by security (Food Allergy News, 2007).

DURING THE TRIP

Responsibilities of the Professional Assistant

For many disabled persons, traveling alone may not be an option. A person may travel with family and friends or hire a medical professional as an assistant (Routson, 2007). The contract may be limited to providing companionship except for emergency care, or be all-inclusive, covering both the physical and mental care of the traveler.

The professional should be comfortable traveling in any type of transportation vehicle, using various accommodations, and addressing the traveler's specific medical issues and care. If you are uncomfortable flying, or communicating with service providers, especially in a different culture, you should reconsider taking the assignment. It is imperative that the medical professional understand the traveler's goals for the trip, and work with the traveler to facilitate a positive experience.

When a medical professional will be assisting the traveler, a written contract should be developed and agreed upon before the start of the journey. The contract should clearly identify expected daily duties, how possible extra activities would be assigned, and any specific tasks that are not routinely part of the medical professional's job description. With a clear contract, the traveler can prevent stress in an unexpected situation and expect basic care to be performed per the agreement. A checklist of daily duties may include the following:

• Helping develop and maintain the medical documentation file. This should include full authorization under HIPAA regulations to discuss the person's medical condition with appropriate medical providers such as emergency department staff (USDHHS, 2007).
• Assisting with activities of daily living (ADLs) such as dressing, toileting, and bathing.
• Preparing meals or ordering meals at a restaurant. Food preparation may include cutting the food into bite-size pieces and, if contracted, feeding the person.
• Transporting, monitoring, and administering all medications. The medical professional needs to be familiar with all the medications and possible interactions.
• Assisting with transportation and luggage needs including but not limited to being the liaison for the medical taxi, wheelchair assistants at airports, hotel bell captain, and cruise ship staff.
• Extra activities might include:
• Assisting with shopping in an unfamiliar mall.
• Assisting with activities such as rides at a theme park.
• Being an advocate if there is a problem with accessible seating at a play or opera performance in the destination city.
• Driving a rental car if medical taxi is not needed.
• Tasks that should be specifically excluded from the contract:
• Planning entertainment (eg, ordering opera tickets) before the trip.
• Finding a hotel after arriving at the destination city.
• Mediating family squabbles.

Air Travel

Air travel problems may begin with the basic planning for the trip. One problem is ordering tickets for disabled seating when using Internet or electronic ticket ordering. Most people can choose their seats when booking their ticket; disabled travelers may need to call the airline because online sites do not allow disabled passengers to seat themselves in special seating. Disabled travelers may have to request a seat change at the airport, which takes more time; besides, there may not be available seats because there are often only six designated seats in coach.

When using assistive devices such as oxygen or wheelchairs, a disabled traveler can order tickets online, but may also need to communicate their special needs by phone. Federal Aviation Administration (FAA) regulations restrict the assistive devices allowed on airlines. There are very specific requirements for oxygen and airlines can require an extra fee (USDOT, 2004).

Online ticket sites (multi-carrier sites) do ask the traveler to indicate the need for a wheelchair during the reservation process, but more specific needs may need to be addressed by telephone. Some flights require passengers to use steps to board and exit, especially small-plane commuter flights. A transport chair may be requested to move onto the airplane if the passenger cannot negotiate the steps. Airlines are only required to provide this service on planes with 19 or more seats (USDOT, 2004).

Even when assistance is requested in advance, the airline personnel may ask that the traveler arrive at the terminal at least an hour before the flight, because it is inconvenient and may require extra staff if the person is overweight or has poor muscle function that prevents them from holding their torso upright on the smaller transport chair seat.

The airline can require an travel attendant if the traveler has significant physical or mental impairments and would need assistance evacuating the plane in an emergency (USDOT, 2004). Airplane staff may have trouble bringing out a transport chairs mid-flight for a passenger, so restroom time must be preplanned. This has caused people with mobility issues to compromise by using diapers or catheters plus eating and drinking as lightly as possible prior to the flight.

Disabled passengers may use transportation devices until they get to the gate and then check them through to the destination. It may be preferable for disabled passengers to use a manual wheelchair with an assistant. Fenner (2007) recommends bringing a personal manual chair for proper size and support. Power chairs must have nonspillable batteries or the ability to remove spillable ones (USDOT, 2004). Batteries may drain on the flight and are difficult to recharge. Battery use and potential damage to the specialized equipment are two big issues with motorized wheelchairs.

Two factors that influence the number of available wheelchairs and attendants are (1) the seasonal fluctuation of tourists, and (2) whether the wheelchair subcontractor has received adequate information from the airlines on the anticipated number of handicapped travelers. A disabled traveler needs to include a long enough stopover to ensure that they make their next flight if they must wait fifteen minutes to half an hour for another wheelchair to become available.

Traveling by Train or Bus

In the United States, public train and bus service should meet the national American with Disabilities Act (ADA) accessibility mandates (USDOJ, 2007). The traveler may experience similar problems to plane travel when reserving tickets. Access across crowded platforms and down narrow isles must be considered when determining the best mobility device to use. The traveler must also be prepared for the possibility of an elevator service not working or the place not being fully accessible despite assurances.

Private tour services both within the United States and internationally may not have the same level of accommodations required of public ones. A person using a wheelchair should verify that the train or bus system is accessible before the trip; for example, when booking bus tours on an international cruise, special tour accommodations may need to be arranged through the cruise line because not all buses use lifts. This will limit the available tours unless the traveler is willing to pay for a private car service (Twardowski & Twardowski, 2007).

Travel plans must include transportation at the destination. The traveler may require an accessible cab or paratransit van to pick them up. If there is a train or plane delay, there must be a way to notify the cab or paratransit company. Porters are very helpful in transferring luggage if travelers have problems lifting or carrying weights over 10 pounds but they do expect a tip for this service. Porters may also insist the disabled traveler wait for an accessible cab even though the traveler is capable of transferring to a regular cab seat.

Security Issues

Travel by a major commercial transportation system (airplane, train, cruise ship) or visiting tourist sites may involve security screenings. Since large groups of people are moving through the security at any given time, the disabled traveler should be prepared for the screening process. The traveler should be able to accommodate the screeners by wearing easily removable shoes and jackets, and carry only a lightweight bag or purse that contains medications and medical documentation. Any additional items should be restricted to those needed before the next destination.

The security area also provides challenges for people with mobility assistive aids like canes and walking sticks. Collapsible canes work better than rigid or wooden canes because they can be folded down and placed in the security bucket. Canes and crutches can be passed through the luggage scanner, but braces must be wand-checked like wheelchairs.

A person bringing any metal mobility devices, including their personal wheelchair, should anticipate that it will be checked for gunpowder residue as the hollow metal tubing is seen as a place to store explosives. An unusual walking aid may be taken from the person because it could be considered a weapon. For example: security has challenged Dana's walking stick (4-foot, noncollapsible) which she needs for balance (she carries a medical authorization letter).

A person with metal in their body may need to have a medical certificate from their doctor stating where the metal is and how it might interfere with a security scanner (USDOT, 2004). Otherwise, the individual might not be allowed through security. This problem might be compounded if the person has lowered cognitive or social abilities. Proper documentation with their personal healthcare practitioner's contact number becomes even more critical when the disabled individual has problems communicating their difficulties.

Disabled people in wheelchairs are not exempt from the requirement to remove additional layers of clothing such as a sweater or jacket and their shoes. They are also encouraged to walk through the scanner "if at all possible," or endure a full-body search by a security person of the same sex. Even though disabled persons are sent through the short line at the security station, the procedure may still take at least 15 minutes due to the full-body search and wheelchair check.

The screening machines are often kept in a cool area, which may trigger problems for a cold-sensitive traveler. For example, Maggie and Dana will turn into "statues" (major muscle groups paralyze) when they are hit by the cold air in the security area and their muscles will not move well until they are out of the section. During this time they may be nonresponsive and floppy if moved but will be able to hear and understand conversations. Maggie's speech may become incoherent when her facial muscles paralyze after being exposed to a high intensity air-conditioning unit. Dana has fallen out of the wheelchair many times in security areas, even when security screeners were warned about her condition. Screeners have expressed suspicion that she's hiding something because she springs back to life once out of the cold security area. Dana was almost kept from going on her plane by security because they witnessed this "miracle," even though her medical conditions were explained, documented, and available to security.

Travel by Private Vehicle

When traveling by car, truck, van, or mobile home, there is no guarantee that the locations along the way will be accessible to all disabled individuals. Basic accessibility in the United States should include designated parking spaces, some form of ramp to the sidewalk, and a larger restroom stall with grab bars by the toilet (USDOT, 2004). On a long road trip, the traveler may need to pack extra medical supplies in their vehicles in case specialized services are not easily available. A cellular phone is essential because it can be used to obtain directions, contact a family member, or call 911 for emergency services.

Designated handicap parking spaces often fill up quickly, or the side van ramp access area may have a car illegally parked in it. A vehicle with a handicap ramp must then park farther away where there are multiple vacant spots to allow the handicap ramp to descend properly. Other vehicles may later park next to the van, not realizing they are obstructing the van's ramp access. This can mean the disabled person is trapped until the other vehicle owners return to move their cars.

Handicap access ramps at rest stops may be nonexistent or blocked by an obstacle. Parking in campgrounds or at rural rest stops may be in a dirt lot with uneven terrain. Some wheelchair users bring along two wooden planks that tie to the back of their wheelchair so they can use the planks as an impromptu ramp. This generally requires the assistance of a companion and is potentially dangerous because the traveler could fall off the impromptu ramp. In high country (eg, towns high in the Rockies) the sidewalks are raised for access during deep winter snow, but may only have two planks side by side for wheelchair access. Stores in high snow country may also have a raised entryway, which makes wheelchair access difficult if a person has poor muscle function.

Restrooms also have accessibility issues for disabled people (not just wheelchair users). Sometimes the larger stall is in use, or out of order, so the traveler should always have a contingency plan. Restroom doors are constructed as fire doors and are fairly heavy. The larger restroom stalls are often used as the family stall with the changing table placed just before the grab bars. If a family leaves the changing table in the down position, it may be hard to position the wheelchair correctly to access the grab bars.

Overnight Stays

Overnight stays in a location away from home can be difficult and challenging for people with disabilities. Many sites are not as accessible as the traveler may have anticipated (eg, easy access to a heated pool). It is important to call the location ahead of time and find out if the individual's needs can be met.

A hotel room with two double beds and an accessible bathroom may not have enough room to move the wheelchair to, or through, the bathroom door. A traveler may need to ask the hotel staff to move or remove furniture to accommodate the wheelchair. As an assistant, you may need to be an advocate for the traveler when the accommodations are unacceptable and ask for a different room.

If the person is planning to stay in a private home, it is imperative that issues with steps and bathroom access be discussed ahead of time with the host family. Private homes do not need to meet ADA standards, and the family may not be aware that even two stairs at the front door may make it difficult for the traveler to enter the house. The bathing area should have either grab bars or a shower chair, especially if there is only a bathtub available.

One commonly overlooked need is enough accessible power outlets. A power wheelchair requires frequent recharging. Power outlets in rooms are often hard to reach even for the able-bodied, and require a grounded outlet (three-prong), which is not always available in older homes. Hotels frequently place desks or other furniture in front of power outlets. A newer feature in hotels is the energy saver switch. This switch turns off all the lights and the power outlets in the room. Maggie was not aware of this feature at one hotel, and her power wheelchair did not charge overnight, causing a loss of battery power by lunchtime the next day.

A positive feature in upgraded handicap accessible bathrooms is the roll-in shower area. Instead of a ledge, there is a sloped area directly into the shower. The negative impact is that the water may retrograde to the rest of the bathroom if the drainage is not properly designed. The traveler may need to request extra towels and definitely should notify the hotel staff of the problem.

Vacation Hazards

When traveling to a variety of destinations it is important to keep in mind the kinds of hazards the disabled individual will need to face. One of the hazards is an excursion that requires more physical, mental, or social ability than was originally anticipated. Another would be inclement weather, such as a hurricane or tornado. Finally, precautions should always be taken to prevent the potential theft of personal possessions. The following three examples describe some of the issues.

Unexpected physical activity may be necessary on a cruise excursion. The tender or bus transportation to the scheduled excursion may be a significant distance from the ship. In Cozumel, Mexico, the tenders dock three miles from the cruise ship and there are no clear directions for return, making it a challenge for a disabled individual to connect with the ships again. Even if the traveler takes a taxi most of the distance, there is still a long walk or wheelchair ride required to return to the cruise ship. This can be especially exhausting, frustrating, and upsetting to a disabled individual not expecting these additional challenges.

Storm activity may not follow predicted patterns. On a trip to see Dana, Maggie arrived just as a tornado warning was issued for the area. The closest safe shelter is in Dana's basement, which is accessed by fifteen stairs. Both women were able to descend the stairs, but they were very frightened. The thunderstorm also changed the barometric pressure and temperature, causing exacerbation of both women's physical symptoms. They were unable to climb the stairs out of the basement for an hour after the storm passed. Precautions had been taken by Dana's husband, and the women had access to adequate water, food, medicine, and a cellular phone.

A local specialty museum in a large city has minimal access (a steep, narrow ramp at the end of a dark alley). This is due to a broken elevator and sidewalk construction. The traveler should consider if this is a safe excursion, or if an alternate location should be considered. Changing sites may not always be possible, but disabled travelers and their companions should always consider personal safety needs. If possible, the local contact person should be notified when choosing alternative destinations in case the disabled individual needs to be reached or found in an emergency.

CONCLUSION

When assisting a disabled traveler in planning and implementing safe travel it is important to fully understand their disabilities, have all relevant medical information available in a readable format, help break down each challenge into manageable parts, and have anticipated challenges (with their solutions) clearly documented along with the medical information. Achievement of these goals will support the travelers and help them enjoy their vacation or trip.

Posted January 25, 2008

Expires January 15, 2010

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