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
Fundraising Options: Where to Go for Help
It can be daunting when facing all the expenses needed to care for individuals living with brain and/or spinal cord injuries. But there is help. Patients can supplement their treatment funds through grants, fundraisers and contributions from generous individuals. Here is a list of resources.
Christopher and Dana Reeve Foundation
This foundation does not give grants to individuals, but serves as a great resource for people with paralysis. Click on the “Paralysis Resource Center,” and there is information on every aspect of being paralyzed, as well as a way to find resources in your area.
Dreams of Recovery Foundation
When former Shepherd Center patient Cindy Donald discovered that most insurance programs wouldn’t cover the cost of Shepherd’s revolutionary Beyond Therapy® program, she decided to take some of the money that had been donated to her to pay for a friend’s therapy. Out of that gesture, the Dreams of Recovery Foundation was born. The foundation now gives grants of up to $15,000 to pay for therapy programs not covered by insurance, equipment for the improvement of everyday life and grants to institutions for research.
Travis Roy Foundation
A year after former Shepherd Center patient Travis Roy was paralyzed from the neck down while playing in a collegiate hockey game, he started a foundation to help others with spinal cord injuries improve their quality of life through adaptive equipment. The Foundation raises about $500,000 a year and makes 70 to 100 grants annually, ranging from $1,000 to $7,000 to provide adaptive equipment, such a voice-activated software, ramps and stair platforms.
Brain and Spinal Cord Injury Trust Fund Commission
www.bsitf.state.ga.us 404-651-5112 or 888-233-5760
Created by a Georgia constitutional amendment, the Trust Fund for Brain and Spinal Injury is designed to provide for things that are not covered by private insurance, Medicaid or Medicare, and funds are provided only once all other means of payment have been exhausted or refused. Outstanding medical bills, medical insurance premiums and medication costs are not eligible for a grant, but things like physical, cognitive and behavioral therapy, adaptive equipment, tutoring, caregiving, vehicle modifications and home modifications are eligible. Application guidelines are available on the website.
To get a broader list of foundations that give grants to people with disabilities, visit the listing on the Foundation Center’s website at foundationcenter.org/getstarted/topical/disabilities.html.
www.helphopelive.org or 800-642-8399
Formerly NTAF, works with families and volunteers throughout the United States to start successful fundraising campaigns for people who are facing a transplant or have sustained catastrophic injuries. Funds raised are tax-deductible and are sent to and held by HelpHOPELive in regional restricted funds. Disbursements are then made to the individual to pay for uninsured medically related expenses, such as specially equipped vans and durable medical equipment, home modifications, home health care services, physical therapy and insurance premiums and co-payments.
Medgift is a combination social networking site and gift registry for patients and people who care about them. Patients can set up a personalized home page, share updates and provide a gift registry of needs. Contributors can pay for hospital expenses and other needs and wishes. Patients can also ask for non-monetary gifts, such as babysitting, prayers, transportation and visits.
Fundly is an online fundraising management website for political campaigns, nonprofits and individual fundraisers. Like MedGift, individuals can set up a customized fundraising page and promote the campaign through Facebook, Twitter and email. Fees are based on a percentage of the donations.
The Council for Disability Rights lists fundraising sources for home modifications at
www.disabilityrights.org/mod3.htm. There is also a downloadable PDF of home modification resources available on the Reeve Foundation website. Also, see a previously published Spinal Column magazine article at: www.shepherdcentermagazine.org/spring-2012/accessible-living/.
www.nmeda.org or 800-833-0427
National Mobility Equipment Dealers Association (NMEDA) is a nonprofit trade association of mobility equipment manufacturers, dealers, driver rehabilitation specialists and other professionals dedicated to improving the lives of people with disabilities and assisting with driving independence using wheelchair-accessible vehicles.
When considering a special needs trust to protect government eligibility, it might be beneficial or necessary to put funds into community or pooled trusts, rather than an individual trust. In many cases, these trusts can provide comprehensive special needs trust services, including service as a trustee, co-trustee or trust administrator. Here are a few that provide those services: