Special Report: Surviving and Thriving With Limb Loss

by Scott McNutt

Dave and Sheila Taylor

Sheila and Dave Taylor
Photo courtesy of Dave and Sheila Taylor

You probably don't know Dave and Sheila Taylor. But you may know someone like them. They are motorcycle enthusiasts from Hallam, Nebraska. On February 23, Dave and Sheila were in a traffic accident. They both lost their lower right legs in consequence. The driver who struck them didn't have insurance. Now, their bills are piling up.

What if your leg or arm required amputation? Of all the thoughts going through your mind, the question foremost in your mind might not be “How much will the operation, hospital stay, rehabilitation, prosthesis and ongoing healthcare treatments cost, and where will the money come from?” The prospect of amputation is difficult enough without considering the possibility of going bankrupt from it. But that possibility may be very real.

Costly Healthcare Conditions

Besides traumatic injury, conditions like heart disease, cancer, high blood pressure and type 2 diabetes can lead to amputation. These conditions are all ranked among the nation's 10 most expensive medical conditions.

The financial cost of these conditions to individuals is high. For instance, a 2006 Australian study concluded that treating chest pain associated with coronary arterial disease (CAD) could cost the average woman more than $1 million during her lifetime. Even the chest pain associated with mild artery blockage (nonobstructive CAD) could reach $750,000. Another study concluded that the 30-year cumulative cost of managing complications in a patient with diabetes is $47,240.

If complications from heart disease, diabetes or other conditions lead to amputation, the costs could be substantial. A recent study by the Johns Hopkins Center for Injury Research and Policy estimated the total lifetime cost of traumatic amputation at $509,275 (in 2002 dollars). This total included:

  • Initial hospitalization • Follow-up hospitalizations
  • Inpatient rehabilitation
  • Outpatient doctor visits
  • Physical and occupational therapy
  • Purchase and maintenance of prostheses.

Medical Bankruptcy

The studies cited above analyze different data, so their totals can't simply be added together to get the lifetime healthcare expenditures for a woman with CAD or a patient with diabetes who undergoes amputation. But clearly, the combined costs would be enormous. Given these figures and the rapid annual increase in healthcare costs, it's not surprising that a 2005 Harvard study found that the number of Americans each year filing for personal bankruptcy because of medical reasons reaches into the hundreds of thousands.

About 30 percent of the respondents to the Harvard study said they filed for bankruptcy because of a specific illness or injury; another 20 percent said healthcare issues contributed to their bankruptcy. Most of these people had health insurance when they first got sick or hurt. However, because of their medical conditions, many lost their jobs, and consequently their insurance. Others retained their insurance but faced crushing debt in the form of insurance copayments and deductibles and payments for services not covered by their insurance.

If you suffer an illness or accident that leaves you unable to work, you face an average 2-year wait before you can begin drawing Social Security disability benefits, warns Paul Gada, product manager for Allsup Inc., a Social Security Disability Insurance (SSDI) representation company. This is cause for concern, because SSDI statistics show that 52 percent of today's workers have no private pension, and 31 percent have no retirement savings. Also, 3 in 10 of today's 20-year-olds will become disabled before reaching retirement age.

“Having a significant disability in itself is a lifealtering matter, but combined with no longer having the ability to earn a paycheck, the financial impact can be devastating,” says Gada.

In the Taylors' case, because of his injury, for now, Dave cannot return to his job as a heavy equipment operator, although he can do office work. Sheila's injuries include a femur broken in two places and considerable skin damage, which requires skin grafts. These wounds have kept her out of work for several months.

Sheila says that because her parents are part owners of the herb farm where she works, “and the other owner is very generous about this accident, there are a few more options for me.” But the Taylors still face mounting expenses. And other people who undergo amputation may have fewer or no options.

Amputees Discussing InsuranceExamining Expenses

The first steps in minimizing financial problems are understanding expenses and sources of available income. When people become disabled, they not only are out of a job, but they also usually face higher expenses for medical expenditures, alterations to make their homes accessible and hiring people to do housework they used to do themselves. If you become disabled, you should review and itemize all expenses. Determine if any expenses can be eliminated or scaled back.

One expense Gada advises keeping is health insurance. If COBRA insurance is available through an employer, check whether you qualify for an 11-month extension beyond the typical 18 months allowed under COBRA. Even after you begin receiving SSDI benefits, there is still a 2-year wait before you're eligible for Medicare. Maintaining insurance during the period before Social Security and Medicare become available can be essential for financial security.

Identifying Income

Once there is a general understanding of expenses, it's important to look at all potential sources of income. People who can't work because of a disability do have other possibilities for income, including income from a private or employer-paid disability policy, workers' compensation or income from SSDI.

However, only about one-third of employees have private disability insurance, according to the Social Security Administration, and workers' compensation is only a source of income for those injured at work or suffering from a work-related disability. More than 90 percent of all disabled workers receiving SSDI do not qualify for workers' compensation. SSDI is the largest benefit program for people with disabilities, paying out more than $79.9 billion in benefits to 6.8 million workers with disabilities in 2006. The average monthly benefit in 2007 was $996.

But not everyone is eligible for Social Security benefits. Among the requirements, you must:

  • Have worked and paid into Social Security through mandatory payroll taxes (FICA) for 5 of the last 10 years
  • Have been disabled before reaching full retirement (65-67 years old, depending on your current age)
  • Meet Social Security's definition of disability (generally, unable to work due to a medically determinable mental or physical impairment expected to result in death or to last for at least 1 year).

If you think you qualify for SSDI benefits, you should file as soon as possible. The wait for a final decision in 2007 was about 18 months.

Retirement Funds and Home Equity

Additional income options may be available by tapping retirement funds or home equity, but both have significant downsides, according to Gada.

For example, if you have a qualifying disability, you can take early distributions from your IRA without penalty. To be considered disabled by the Internal Revenue Service, you need to provide proof that you are unable to do any “substantial gainful activity” due to your physical or mental condition. You also need a doctor's statement that your condition is expected to result in death or to “be of long, continued and indefinite duration.” Otherwise, you're generally subject to a 10 percent tax penalty for taking distributions from your IRA before age 59½. Similar rules apply to early distributions from 401(k) accounts for financial hardship.

People with disabilities sometimes use equity from their home to make ends meet. This can include taking out a home equity loan, home equity line of credit, second mortgage or reverse mortgage. However, half of all mortgage foreclosures are the result of a disabling injury or illness. In most states, your home is protected if you are forced into bankruptcy. But if you take out a mortgage, the mortgage amount can be lost in the bankruptcy proceedings.

Asking for Help, Helping Yourself

Family and friends can be an incredible source of emotional and financial support for individuals faced with growing medical bills. Together, they may hit upon innovative ways to raise money to pay the bills.

For example, Laura Dragoo, a friend to Dave and Sheila Taylor, is working to organize a benefit poker run for them, tentatively set for May 31. “We are trying to make this event such a success that it will lessen their financial burden,” says Dragoo.

To raise money for people with limb loss, families and friends often hold rummage sales, bake sales, benefit dinners or auctions. Other fundraising activities include bike-a-thons, runs, races, golf outings, softball tournaments and concerts, to name only a few possibilities. Some amputees or their supporters create products to sell. Tom Seibert lost his left hand in a wake-boarding accident in 2006. He and his mother, Mary, formed an organization they named T Minus Five.

“T Minus Five came about as we were waiting in Texas for Tom's first prosthetic hand,” explains Mary. “I was already knitting hats, and Tom came up with the idea of incorporating a hand into the pattern. At first we sold mostly to his friends at school; later, we added a Web site.”

Mary says they have expanded their inventory to include stickers and hemp bracelets made by Tom and will soon add T- shirts designed by Tom.

"Our biggest accomplishment is the connections we have made with other amputees, and our growing awareness of their ongoing needs,” says Mary. “It means a lot to Tom and our family that T Minus Five will not only help him financially but others as well, since part of our profits go to UpperEx to aid other amputees. T Minus Five is also proud to help raise awareness of the challenges faced daily by some truly remarkable people!”

Many organizations, some founded by amputees, are dedicated to helping people with limb loss or limb difference get new prostheses or helping with medical expenses. For instance, Kylee Haddad encountered difficulties with her insurance company in the wake of her own amputation. So she started the Arms & Legs Foundation to help individuals who have partial coverage through private or employer-sponsored insurance, but don't have the necessary durable medical equipment coverage to pay for a prosthesis.

“I was so angry about the insurance and the way civilians were being treated,” says Kylee. “I thought it was so unfair. But if 25 people hear my story, maybe it will make just one less person suffer.”

Kylee believes that if the 1.7 million amputeesin the U.S. knew the limitations of many insurance policies' prosthetic coverage, they would force insurance companies to provide better coverage. But many people with limb loss remain unaware of this problem.

“So it's my job to fight this lack of understanding, because insurance companies make their millions, while the less fortunate American crawls around instead of walking because a prosthesis is ‘not medically necessary,'” says Kylee.

Other organizations like Limbs for Life, the Shriners Hospitals and many more are dedicated to meeting the medical and prosthetic needs of people with limb loss. Some organizations help with other needs. For instance, the national nonprofit Rebuilding Together rehabilitates homes free of charge for low-income homeowners, particularly seniors and people with disabilities.

Where to Start?

For those facing debts because of medical conditions, fundraising and moneymaking possibilities are only limited by the imagination; it's a question of finding the method that works best for you. Nonprofit and government organizations are there to assist those in need because of illnesses or injuries. Check the resource list at the end of this article to find an organization that may address your needs. Paul Gada of Allsup also suggests seeking professional help.

“Whether it's a credit counselor to help you reduce debt, a financial advisor to help you find the best sources of income or a claims representative to help you streamline the SSDI application process, you shouldn't be ashamed to ask for help,” says Gada. “The earlier and more proactively you seek help, the more support you can get to help put you back on the right track.”

If you are lucky enough to not have a financial need, then you may want to consider how you can help others who do. If you can help someone today with a little cash, labor or even shared experience, then you've made tomorrow's world a little better for everyone.

Note: No funding from the Centers for Disease Control and Prevention (CDC) is used to support ACA advocacy efforts. The views represented in this article do not necessarily represent the views of the CDC.

Financial Assistance and Other Resources

 

Last updated: 09/22/2008
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