Sample Reeve Foundation Peer & Family Support Program Partner Agreement
One of our core beliefs is in empowering those affected by paralysis with the best knowledge, resources, support, and community. We believe so strongly in this that with the support of a cooperative agreement with the Centers for Disease Control and Prevention, we created The Peer and Family Support Program (PFSP).
The Reeve Foundation Peer & Family Support Program is a national peer-to-peer mentoring program. Its mission is to provide critical emotional support, as well as, local and national information and resources to people living with paralysis, and their families and caregivers. A peer mentor is a positive role model who empowers people living with paralysis, their families and their caregivers, by providing emotional support, sharing and utilizing their own personal experiences to answer questions and demonstrating a positive perspective on life.
Peer mentoring is arguably the most direct and beneficial tactic to assist those living with paralysis and their families and their caregivers. The assistance and guidance from someone who is thriving with the same or similar injury does much to calm and focus the newly injured, as well as, the person transitioning through the stages of life with paralysis. The Reeve Foundation has widely supported peer mentoring through its Quality of Life Grant Program since 2001. To date more than $500k has been awarded to independent peer and counseling programs across the country. The Reeve Foundation launched a national peer program designed to fill the gaps we have noticed over the last ten years: to specifically encourage programs where they do not exist, to network existing programs, and to most importantly introduce a standardized curriculum to certify mentors.
The need for those living with paralysis, along with family members and caregivers, to learn the importance of health and wellness and how to avoid the dramatic effect of secondary conditions on employment, education, and re-integration into society may never be greater. We know that hospital stays for the newly injured have been tragically reduced, and services at local and state levels have also been reduced or nearly vanished. There is a significant void in service and support to those that live with paralysis, and this void will most likely continue to grow. We believe a national peer mentoring program can help fill that void.
No one hospital, foundation or mentor program can fill the national void alone. To empower those affected by paralysis with the best knowledge, resources, support, and community, it will take a national effort. An effort that elevates the importance of a peer-to-peer relationship, and demonstrates that not only is a peer program a nice thing to have but is a necessary resource in the paralyzed community. We believe partnering with existing programs is one way to accomplish the goal of a true national mentoring program. It is important to note that while the Reeve Foundation is focused on creating a national peer program, we recognize and appreciate the fine work already being done at organizations and institutions across the country. The Reeve Foundation hopes to attract and work with these fine programs as we connect-the-dots of peer programs across the country and create a network of peer programs covering the entire US.
It is hugely important to an effective national peer program to firstly have a common level of training and certification, secondly have direct access to the National Paralysis Resource Center (PRC) and its Information Specialist team, and finally to have the portability quality to maintain peer involvement as a person or family relocates across the country.
PFSP Primary Goals
What are some of those benefits?
Peer Mentor Characteristics
Peer Mentor Encounters
Peer Mentor and Client Matching
The Regional Coordinator (RC)
The PFSP MentorNet
Evaluations and Surveillance
Note: The actual agreement will have effective date listed and include signatures from the representatives at the Reeve Foundation and partnering organization.
Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.
American Association of SCI Psychologists and Social WorkersPromote research to improve quality of care and works to improve skills and techniques of members.
CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.
Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.
Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.
Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.
Caregiver.comOffers a directory of support groups for caregivers.
Determined 2 HealProvides helpful information for the newly spinal cord injured.
FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.
Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.
The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.
The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.
National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.
New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.
Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.
NJ Self-Help Group ClearinghouseEnables people to help themselves with self-help groups.
Paralyzed Veterans of America (PVA): Spinal Cord InjuryFor more detailed information on the clinical practice guidelines on respiratory management with spinal cord injury you can request booklets from the Paralyzed Veterans of America. These booklets also provide guidelines on proper weaning from a ventilator.
SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.
Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.
University of Alabama at BirminghamOffers an information sheet (Info Sheet #11) on bladder care and management.
United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.
U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).
Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.
Library Books and VideosFind resources within the PRC library catalog.