Since 1999 the Reeve Foundation has awarded almost 2500 grants totaling $17 million to non-profit organizations that help improve the quality of life for individuals living with paralysis and mobility impairments, and their families.
The Foundation recently awarded grants for the first cycle of 2013. Here are the top five grants and some detail about their programs.
The Center for Research on Women with Disabilities
(CROWD) at Baylor University was the highest funded program in the recent cycle of Quality of Life Grants. The program, funded at $25,000, will create consumer-oriented information resources on pelvic health for women with spinal cord injury, multiple sclerosis, and spina bifida.
Dr. Margaret Nosek, director of CROWD, explains that the health needs of women with disabilities are far from being met. “We did a major survey 20 years ago that revealed all kinds of problems – and we’re still hearing the same problems today. In fact, we’re even further behind. The disparities are more severe between women with disabilities and nondisabled women.”
Women with disabilities often can’t get in to see doctors without long delays and once they do, they can’t get up on the exam table. “The attitudes are still the same,” Nosek says. “Women are not taught about contraceptives and they are not being screened for certain cancers. Moreover, women with disabilities are less likely to have insurance.”
Health care providers tell Nosek their Medicare reimbursements are lower than ever and that they don’t have time, or training, to deal with women with disabilities. “That’s not good enough,” says Nosek. “We’ve got to become as noisy as possible and educate ourselves about our own needs.”
Nosek is an academic of long-standing but also a veteran activist, mentored by Justin Dart, considered the father of disability rights in the U.S. “Justin told me, ‘when there are times of crisis, people with disabilities will be the first to be forgotten.’ And that’s coming true. As a community, we can’t even get mentioned on the laundry list of disadvantaged populations.”
CROWD empowers women with information, and with advocacy. Says Nosek, education – solid and reliable information – is the key to her strategy, and was the basis for the Reeve grant request. “We need to get critical information to people, to arm them to demand excellence. We’re not going to take it anymore. We’re going to put our anger toward positive change.”
The grant will help create an interactive web page with practical information about preventive health and access to health care for the pelvic organs; offer four webinars on this topic; and maintain a blog with contributions by consumers and medical professionals with advice and comments about pelvic health for women with spinal cord dysfunction.
received a $15,000 Quality of Life grant to support a year-long program that engages youth with disabilities and their families in various water sports activities, environmental education and community service initiatives. Says founder and president Harry Horgan, the grant will provide trained mentors to direct over 40 inclusive water sports sessions annually.
Says Horgan, who started Shake-a-Leg in 1980 in his native Newport, RI and later moved it to the Miami area, “My dream [in founding Shake-a-Leg] was to create a place where people like me could improve their functionality and gain independence. We’re still doing that with all of our rehabilitation, recreation, and educational programs. We are still creating a place where people can help themselves.
Shake-A-Leg Miami conducts community outreach at schools and community settings and through a series of community events, including a Veterans Boating Weekend, fishing, swimming, track and field, and boating safety.
The Independent Living Center
in Joplin, MO received a $15,000 Quality of Life grant to build wheelchair ramps for people with paralysis affected by the 2011 tornado – a $2.2 billion disaster that destroyed much of the Joplin community.
Stephanie Brady, director of programs for the ILC said support for home modification addresses a dire need. “This was the third largest tornado in U.S. history; 7,000 people lost their homes and 20,000 were displaced. Many individuals who were displaced are just now finding permanent housing. But while some affordable single-family housing is coming on line, much of it is inaccessible. This grant will help us make the housing units accessible.”
Brady says the ILC has staff to do the work; the grant provides for materials and supplies. The Joplin ILC is working with local authorities to assure that as the community rebuilds, the future needs of people with disabilities are met. Says Brady: “We’re working with the Missouri housing development agencies to require that 10 percent of new housing is build with universal design standards. The community is facing difficulty but we don’t expect to just come back. We want to come back better than we were.”
The Elmwood Health Center
in Buffalo, NY received a $14,000 Quality of Life grant to purchase a pressure mapping system for the center’s wheelchair clinic. The center has always had a strong focus of preventing secondary complications of disability. says Denise Paszkiewicz, foundation director. “We serve a lot of people in wheelchairs and of course pressure sores are a major problem. This new mapping system will improve diagnosis of pressure sensitivity points among patients and therefore help prevent pressure sores and their debilitating consequences. This will help hundreds of people.”
The Elmwood Health Center, an affiliate of the not-for-profit health and human services agency People Inc., provides primary and specialty care services to a diverse patient base, in particular of those with special needs. Paszkiewicz says the center serves 10,000 patients a year in the 17-county region of western New York.
., a housing resource for people with disabilities in Portland, OR received a $12,500 Quality of Life grant to replace portable ceiling hoists with new models. Says Alena Guggemos, development director, “The straps on the old lifts were wearing thin and we needed to upgrade for the safety of residents and staff. We will be able to leverage the Reeve grant with a matching grant from the community.”
QUAD Inc. (Quadriplegics United Against Dependency) was founded in 1975 by Bud Myers, who was spinal cord injured as a result of a diving accident. The Portland community had no accessible housing or supportive services to help newly injured quadriplegics transition into life with a disability. Bud had no connections or special skills but brought together the community resources needed to open Myers Court in 1980 a pioneering, barrier-free, rest-subsidized housing facility. Residents share services; many share attendants and caregivers.
Guggemos says Quad, Inc. now has 85 units in four buildings and hopes to add 40 more on a property in east Portland. There is great demand in the community. “We have a waiting list of 75 people; it takes one to two years for a person move in.” Residents, she says, must be low-income, primarily reliant on a wheelchair for mobility, medically stable and able to direct their own care and manage their personal needs. Qualifying persons pay 30 percent of adjusted gross income for rent and receive a utility allowance.