Filling The Paralysis Funding Gap

Posted by Michael Collins in Life After Paralysis on August 17, 2015 # Health

People living with paralysis, from whatever cause, lose many things besides movement as a result of their injuries. It doesn't matter if the paralysis originated from birth or is the result of a disease, accident or other sudden onset, there is likely to be a loss of lifetime earning capacity and a rapid depletion of whatever savings existed prior to the paralyzing event that can be as devastating as the disability itself.

The situation is a familiar one which can be confirmed by most individuals who struggle to get out of bed each day, who forego luxuries and sometimes basic needs in order to pay for essentials, or who can't afford the advanced therapies and equipment that lead to a better life. If someone is trying to live on meager Social Security benefits and lacking a high-paying employer, paralysis is too often a sentence to a life of poverty.

Fortunately family and friends often step in to provide support and help fill whatever funding gap exists during the first few months or years after the disability strikes. While they might be willing to make sacrifices in order to stem the outgoing tide of funds for a while, counting on relatives for long-term needs is not a great plan going forward. Because of that reality, it is important that people in that situation get involved with stabilizing their finances in some other manner.

How can that happen? There are many options for helping to fill the paralysis funding gap, and assuring that the gap is as narrow as possible is a good first step. Are expenses minimized or eliminated wherever possible to shrink the household budget? Are all available benefits being accessed, either to reduce expenses or to increase income?

There are people who are either unaware of their eligibility or who choose not to use the programs and discounts that are available to them and to others in similar circumstances. State vocational rehabilitation agencies often pay for assistive technology, books, sometimes tuition, and transportation expenses related to finishing an education, getting a degree and becoming employed. That often includes modifications of vehicles to make them accessible. Supported housing, Medicaid, state-supported attendant care, free or reduced rate transportation, and discounts at merchants or restaurants can help take a little pressure off the checkbook. Loans with lower interest rates for purchase of assistive technology are available through many state governments or nonprofits.

Are the costs of over-the-counter meds and supplies not covered by insurance getting you down? Pharmacies or drug companies have been known to reduce the costs of their products to those on low incomes. Shop around, as the Internet can sometimes uncover great bargains from surprising sources. Have your doctor write a prescription for as many of those items as possible, or at least a letter describing why you need them, and hang on to your receipts. If you have the opportunity to itemize on your tax return, assure that everything medical is included on the medical deductions list.

Fundraising is a great option, even if it is on a one-time basis to meet a particular goal. There was a time, back in the dawning of the Internet, when fund-raising took a lot of effort and couldn't be accomplished with a computer keyboard. When I had my spinal cord injury in 1988, family and friends stepped up. The small North Idaho community where I had lived held a huge fundraising dinner for my benefit. They donated items for an auction, had food provided by one of the best restaurants in the region, and even included homegrown entertainers. The funds raised were used to help me pay for a used van and to remodel my first tiny apartment so it was semi-accessible.

Once I moved back to the community, I quickly learned about the financial impact of the costs of items or services that were not covered by my insurance; for instance, no insurance provider, particularly Medicare or Medicaid, will pay for something with a description that starts with the words "spare," "backup" or "auxiliary." Thus when it came time to purchase a manual wheelchair to use as a backup in the event that my power chair failed once again, which it was doing quite often at the time, it was necessary to fundraise on my own.

Friends helped organize a charity run, with me as the beneficiary and a goal of raising enough money to purchase the needed chair. There was work involved with making "Run the River" a reality but it was all worth it, as my fundraising goal was met.

Such old fashioned fundraising is still in style, although the Internet provides many tools that help make such projects easier and assures that the news about them will be spread even wider. Fun runs/walks/rolls, auctions, bingo nights, golf tourneys, bike races and other similar events take place year-around; people with significant disabilities or life-threatening illnesses are the beneficiaries of many of them.

A fairly recent phenomenon is crowdfunding to raise money for major or unforeseen medical expenses. Dozens of crowdfunding websites include medical fundraising options in their rosters of services.

Friends of Scott Rains used that method to raise $20,000 needed to pay for the purchase and installation of an overhead ceiling lift when the respected paraplegic travel writer and disability advocate was hit with an unexpected and serious illness. They used the gofundme website then broadcasted the availability of the fundraising drive worldwide. The goal was met and the lift installed, so he can remain in his home during recovery. Jesse Collens, a quad from Washington State, is hoping that the same website will help him achieve his goal of being able to purchase a house.

Brittany Correia was living in Hawaii in 2009, where she was a passenger in a car that crashed at about 100 mph; the accident left her quadriplegic. Now living in California where she was flown for rehab, she has created her own fundraising site, BritsWill2Walk, for the purpose of supporting her during the extensive rehabilitation needed in order to be able to walk again.

Many donors prefer to make contributions to a cause they believe in or for a person they know, and perhaps gain a tax deduction in the process. Shannon Shensky, Director of Communications for HelpHOPELive, advises that they are not a crowdfunding site; but are a 501(c)(3) nonprofit that specializes in developing community-based fundraising campaigns for people with unmet medical and related expenses due to organ and cell transplants or catastrophic injuries and illnesses. She pointed out that there are benefits to working with a nonprofit that specializes in meeting medical needs, as some donors may be able to gain tax advantages for their contributions.

There are also situations when fundraising is for a different reason than medical expenses. Mike Vowels was a champion skier when he incurred a SCI that left him paraplegic. He used Project Karma to raise $10,000 for costs related to a documentary about his return to skiing: RETURN to PARADISE - The Skiing Project. When completed, Mike plans to use the film on a speaking tour in hopes of convincing others, especially wounded veterans, of the possibilities found in life after disability. He recommends setting reasonable goals for fundraising, and believes that most of the donors will be friends, family, dedicated to the same cause or attracted to do so through word of mouth or direct exposure with the party seeking the money.

People sometimes go beyond filling their personal needs when setting a fundraising goal. Since a diving accident in 2005 that left him quadriplegic, Michael-Ryan Pattison has established a foundation that focuses on fundraising for the purpose of establishing a West Coast Center dedicated to minimizing the impact of spinal cord injuries by using activity-based restorative therapies; the foundation has also provided direct support to many individuals who required Assistive Technology or modifications to their housing to enable them to exercise and live independently. Following a pattern used successfully by the Buoniconti family and the Miami Project to Cure Paralysis, Michael-Ryan's foundation hosts an annual golf tournament and charity dinner/auction to help fund the organization.

It seldom pays to sit back and wait for good things to happen, so it is important to do whatever possible to close the paralysis funding gap. If you have even better ideas, we would like to hear about them as well.

© 2015 Michael Collins | Like Mike on Facebook

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.