Closing the Gap in Cost and Care
Finding resources and identifying funding vehicles make all the difference in a patient’s financial well-being – and peace of mind.
Illustration by Justine Beckett
Written By Sara Baxter
It is an irony best classified as cruel: An injury to the spinal cord or brain not only turns a person’s physical world upside down, it also brings the complexity and anxiety of financing treatment and accommodations for a catastrophic injury.
The sad truth is that most families are unprepared for the harsh financial consequences of such an injury. Insurance policies typically cover several weeks of rehabilitation care, but the average stay at Shepherd Center is nearly six weeks.
“Generally speaking, there is a mismatch between the costs of catastrophic care and the insurance coverage people have to cover those costs,” says Mitch Fillhaber, Shepherd’s vice president of managed care and marketing. “As a result, people are surprised to find out what catastrophic care costs.”
Further complicating the issue is the gap in coverage for related costs such as caregiving, ongoing therapy, adaptive technology, home modifications and transportation. So patients and families have to think creatively about how best to generate funds to help cover costs – and how to make sure every available dollar is spent in the smartest way possible.
Creative fundraising often begins at the local level – with patients and their families and friends organizing community support. Former Shepherd patients tell stories of receiving funds from golf tournaments, bike rides, carnivals and other fundraising events held in their honor. Contributions take the form of cash or equipment. Several nonprofit organizations and social networking sites exist to help people generate and accept donations (see sidebar).
Foundations and nonprofit organizations can also be a resource to help cover expenses. Former Shepherd patients Cindy Donald and Travis Roy have set up foundations that provide grants for equipment and therapy. Other foundations around the country do the same. The challenge is to conduct thorough research to identify a match between a foundation’s focus and the patient’s need.
Finally, government assistance can add support in the form of Supplemental Security Income (SSI) and Social Security Disability Income (SSDI), and through Medicaid and Medicare. People with disabilities who have very minimal income and resources may qualify for Medicaid and SSI, and those who have been gainfully employed and paid into the Social Security system may qualify for Medicare and SSDI.
In most cases of catastrophic care, patients must rely on some combination of public assistance and help from other sources, such as personal income, donations or grants. The added irony: One can cancel the other out. For example, if a patient’s assets from any source – grants, donations, settlements, inheritance or other – exceed $2,000, then Medicaid and SSI benefits can be lost.
This means that if a person is on Medicaid and SSI and receives an outright distribution of settlement money from a lawsuit or from a fundraiser or grant, he or she loses SSI and Medicaid government benefits. The same is not true for Medicare and SSDI, however. Those benefits are not “means tested,” meaning they are not constrained by income thresholds.
Thus, identifying techniques that maximize the value of every dollar is crucial. One way to protect means-tested government benefits is to set up a special needs trust (SNT), which provides financial support to individuals with disabilities while allowing them to remain eligible for public benefits. Funds placed into the trust aren’t counted as an eligible resource and can be used to cover medical costs and other quality-of-life expenses.
“Patients who become eligible for Medicaid and were injured because of the fault of someone else, or those who have community support, should consider asset protection through a special needs trust,” says Liz Schoen, Shepherd Center’s former general counsel. SNT funds can generally be used for everything except food and some shelter items. “That could include Shepherd’s Beyond Therapy® program, recreational therapy, a modified vehicle, even a trip for the patient and a caregiver,” Schoen explains. “The trust supplements what government programs won’t pay for.”