Parenting a child with medical needs can be isolating, even surrounded with family, friends, and a stellar support network. There are times I feel like I’m gasping for breath as I navigate through medical records, insurance claims, diagnoses, specialist appointments, medical bills, and daily struggles of my child’s unique life. Knock off one of these for me and I’ll hug you every day for life (or buy you chocolate, whichever you prefer).
In addition to all of these daily tasks, we drive approximately 15,000 miles every year to get Jack to his treatments. We load up every eight weeks and drive from Oklahoma to the Greenville Shriners Hospital for Children in South Carolina. We rack up a lot of miles on our van. But due to the financial assistance we get for our travel, that’s all we have to worry about. Our local Shrine helps pay for gas and hotel. During our 3-day stay in Greenville, we stay in free rooms at the hospital, at the Ronald McDonald House, or at a local hotel that gives a huge discount when arranged through the Travel Coordinator at the hospital.
There are plenty of resources available, but the problem for many of us is having the time to find them. I’ve compiled a list of the most notable organizations who assist with medical travel for kids, with a special section focused on those who have the same diagnosis as Jack at the bottom of the list. At a minimum, these are available for a large region of the United States, but most are available nationally, with a few who help anyone globally. They are also not focused on one particular diagnosis, offering most parents an opportunity to apply for assistance.
Have any to add? Contact me!
Financial Resources for Medical Travel:
Healthcare Hospitality Network: Nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities.
Mercy Medical Angels: Mercy Medical Angels’ mission is to ensure that no one in need is denied medical care due to a lack of transportation.
Children’s Flight of Hope: Provides air transportation for children to access specialized medical care. Both commercial and private options are available, and through a partnership with American Airlines, CFOH is able to support international requests.
LifeLine Pilots: Facilitates FREE transportation for such medical needs as on-going medical treatments, diagnosis and follow-up care.
Miracle Flights: Provides domestic and international flights for children and their families for free to distant, specialized care and valuable second opinions.
Air Charity Network: Provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis. Also coordinates flights for organ transplant candidates, people involved in clinical trials, repetitive treatments, victims of abuse seeking relocation, families receiving help from Ronald McDonald Houses, Shriners Hospitals and many other charities, disabled or sick children to special summer camp programs, and for many other humanitarian reasons.
PALS: Patient AirLift Services arranges volunteer medical flights and free air transportation for needy individuals throughout the greater Northeast region, from Virginia to Maine, Ohio to Massachusetts. Patient flights originating or ending beyond our primary coverage area are conducted by our member pilots, or are coordinated with other organizations, to provide patients with a seamless travel itinerary.
Air Care Alliance: Works to transport patients in need to facilities where they are able to receive medical attention they might otherwise have to do without. Many groups also play a significant role providing disaster and emergency relief, serving our veterans, flying for environmental support, transporting animals, taking youth on educational flights, or performing other community service missions.
Amtrak: Offers discounts to passengers with a disability and their companion.
Ronald McDonald House Charities: Keeping families close to each other and the care they need. Provides housing, support, resources and access to healthcare.
Joe’s House: We list cancer treatment centers and hospitals across the country with nearby lodging facilities that offer a discount. Although Joe’s House caters to cancer patients, any patient, regardless of diagnosis, may use the lodging facilities listed.
Hope Air: Arrange free flights for Canadians who are in financial need and must travel to healthcare.
Local Hospital Programs: Check with your treatment hospital for resources regarding free lodging programs, discounts for area hotels, travel assistance, financial assistance for treatment, programs for Christmas gifts, and more.
Other Financial Resources:
Local Shrine Centers: May assist with travel expenses (including the Road Runners who drive patients and their families to and from Shriners Hospitals), medical devices, and other medical expenses. Contact your local chapter for more information.
Shriners Hospitals for Children: Shriners Hospitals for Children is committed to providing specialized care to children with orthopaedic conditions, burns, spinal cord injuries, cleft lip and palate, and certain other special health care needs, regardless of the families’ ability to pay.
HealthWell Foundation: HealthWell’s Pediatric Assistance Fund helps children access the medical treatments they need, regardless of disease type or condition. Through the fund, HealthWell is able to assist families in meeting their cost-sharing obligations to help their child start or continue medical treatments they otherwise would not be able to afford.
UnitedHealthcare Children’s Foundation: UHCCF grants provide financial help/assistance for families with children that have medical needs not covered or not fully covered by their commercial health insurance plan. The Foundation aims to fill the gap between what medical services/items a child needs and what their commercial health benefit plan will pay for.
First Hand Foundation: First Hand Foundation is a public 501(c)(3) organization that provides funding for individual children—both domestically and globally—who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care.
National Organization for Rare Disorders (NORD): Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
The Maggie Welby Foundation: The Foundation seeks to aid students (grades K-12) and families in financial need. Grants may extend to children and families in need of help with bills, athletic opportunities, medical needs, or an opportunity that a child would not otherwise have. All grants are awarded to the family, but are paid directly to the specific purpose for which the grant was applied. Organizations that directly benefit children can also receive grants on an annual need.
Your local Community Foundation: Community foundations are grantmaking public charities that are dedicated to improving the lives of people in a defined local kidsgeographic area. They bring together the financial resources of individuals, families, and businesses to support effective nonprofits in their communities. More than 750 community foundations operate in urban and rural areas in every state in the United States. Your local foundation can refer you to their applicable grant programs and/or to other local charities in your area.
Local churches: Most churches operate programs to assist members with medical treatments and expenses. Many operate for the community as a whole, not requiring church membership to be eligible for their programs.
Local Chapters of National Organizations:
Easter Seals: Offers a variety of services to children who have disabilities or special health-care needs.
Elks Lodge: Provides scholarships, youth programs and might provide other financial services. Elks invest in their communities through programs that help children grow up healthy.
Kiwanis: For more than a century, Kiwanis has created opportunities for children to be curious, safe and healthy regardless of the community in which they live. When you give a child the chance to learn, experience, dream, grow, succeed and thrive, great things can happen.
Lions Clubs: A Lions club in or near your community may sponsor a program that provides assistance for the purchase of eyeglasses, hearing aids, health-related services, scholarships or educational needs.
Children’s Spine Foundation: Helps children diagnosed with complex spinal deformity access medical care. We help families obtain expert medical care by providing financial assistance for travel through our Family Grant.
Pediatric Spine Foundation: The purpose of the PSF Travel Assistance Program is to help families with travel costs so that they may be able to consult with an expert spine surgeon who will provide treatment options for their child with scoliosis.