As a medical-caregiving family, the thought of extended travel, especially over long distances, can (justifiably) generate a lot of fear and anxiety.
Much of it is in the unknowing. Anything can happen, and different medical needs can pop up at any time during travel. That anxiety is real and entirely understandable.
The idea of family travel when there is a child with a high degree of medical needs may also ignite feelings of deep stress grounded in the sheer volume of logistical requirements. Children with medical diagnoses often require a large number of medications, supplies and/or equipment. Planning to travel with these items on-board can feel overwhelming.
Here are FIVE ways our family prepares for extended travel with our medically-complex child.
1. Talk with your doctors.
Schedule time with your primary care team to discuss your travel plans or ask questions during regularly scheduled appointments in the weeks before travel. (Tele-health capabilities and online portals make this easier.) Discuss how best to address health issues or manage medical care on the road. Work together to create plans for emergency response if such situations were to occur outside of your regular region of care. Ask your care team to submit any necessary referrals or send new prescriptions for medication refills.
2. Update all medical records on file and prepare documents for travel.
Visit your online health portal to ensure that all medical records are up-to-date and readily available for download if the need were to arise while traveling. Do you know how to authorize record-sharing from your health portal? If not, contact your primary care team and ask for instructions. This will allow for more expedited and effective emergency care if necessary.
Print a fresh copy of the most recent "care plan" that includes a list of diagnoses, medications, allergies, immunizations, and instructions for treatment based on known medical conditions such as pain, seizures, etc. Alternatively, create a one- to two-page document that includes this same information. (There is no need for anything fancy. The goal here is to create a document that can be handed off to emergency response personnel or medical staff in the case of an emergency.) Tuck a copy of this printed document in your purse and/or medical/emergency go-bag.
Purchase a new jump-drive and upload the care plan, along with any other pertinent documents. This might include recent medical assessments, copies of imaging reports, a school IEP, or therapeutic treatment evaluations with stated goals. Attach the jump-drive to your car keys, so you have it available, if needed.
3. Pre-order extra medications to save you time on the road.
Contact your pharmacy five to ten days prior to travel to notify them of your plans and request early fills of all medications. Health insurance plans typically cover a 30-day supply of medications at one time. However, in advance of travel, your pharmacy can request a special authorization from insurance to approve a 60- to 90-day supply. This takes time, however, so give your pharmacy ample time to work on the request.
Note: Depending on your prescription coverage and the type of medication requested, the insurance company may deny a pre-fill of one or more medications for travel. If this happens, you will need to prepare to fill your medication on the road. There are pharmacies that can mail medications anywhere in the country. You may consider transferring your medication(s) to one of these pharmacies. Or, in the alternative, in the days leading up to a refill, you will need to contact a local pharmacy that is in your insurance network, wherever you are at that time, and ask them to transfer the prescription to fill.
4. Know your insurance coverage.
Take time to review your health insurance coverage in advance of all travel. Research the area(s) where you will be staying for information about local hospitals, pharmacies, medical supply companies, and other providers. Determine who is in network and who is not. This will become important if the need arises to coordinate care or acquire supplies on the road. It may also be beneficial to speak with someone at your insurance company about their policy for reimbursement for the cost of medical supplies or other out-of-pocket expenditures. This can help you properly budget for your trip.
5. Stockpile medical supplies and other necessary items.
Determine the quantity of each medical supply item you will need to cover your travel time. If your travel plans will cause you to miss your regular supply delivery date, you will need to plan ahead to cover that period of time. Keep your travel plans in mind when ordering medical supplies in the months preceding your date of departure. Pad your order, if possible, to ensure you have enough supplies on hand, or call your medical supply company to request authorization of additional items.
If necessary, determine how you can purchase a few additional items out-of-pocket before leaving to avoid the hassle of attempting to locate these items when you are out of town. Some areas also have online parent groups accessible via social media to facilitate gifting or trading medical supplies. Post to one of these groups requesting certain items if you are unable to find them elsewhere. Medical families are often happy to give away their extra supplies.