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Spinal Cord Injury Paralysis Resource Center

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Reeve Foundation Peer and Family Support Program

Focusing on Peer Recruitment

In order to reach more and more people across the country, it’s critical that we be able to demonstrate that peer to peer support isn't just a “nice to have” but instead, a truly necessary service and resource for the community of people living with paralysis. Great work is already being done through the PFSP, but without new peers in our network, and the reporting of the new “peer encounters” that will follow, we won’t be able tell the full story of the program and demonstrate its impact. The ongoing mentoring taking place in the PFSP, both locally and nationally, provides powerful proof to how the program is at work across the country. But the story of its reach will become even more powerful, when we back it up with growing numbers.

The first and easiest way that you can help with peer recruitment is to make sure that you are entering names that are referred to you through the PFSP into the Mentor Management System (MMS). And that you are doing so in as close to real time as possible. In addition, if you have had referrals and encounters from a week, month or even a year ago that you forgot to enter, you can still put them into the MMS. Please approximate the appropriate date if you don’t know it for sure. Doing so only takes a few minutes.

Another easy way to grow peer recruitment is to think about the people in your everyday life. Remember that peers and encounters come in different shapes and sizes: They’re not just the ones the PFSP refers to you, but also, they can be people that you are mentoring formally through an existing program you may be involved in. A peer may be a person you don't even think of as such, because they don't request an "official" visit. Perhaps you see him/her at sports practice or at group community events, and he/she asks you a few questions. A peer could also be someone you formally mentored for several months or years, but who you only hear from once a year by phone or email when they have a question, or want some perspective. These people are peers and they can and should be entered into the MMS.

Many of you were mentors in your daily lives before you joined our team, and you are still doing so outside of the matches made through the PFSP. This is great, and one of the reasons we wanted you in the program in the first place. These peers can help be part of the story, but in order to help us to ensure peer mentoring happens in every corner of America, we ask you to please enter them into the MMS.

In many of these instances you were probably mentoring some of these people before you were certified with the PFSP -- that's fine. You can enter them in now as a peer, and then update new encounters as they arise.

As a reminder, all peers entered into the MMS are not added to or shared with other Reeve Foundation departments. A peer will not receive any solicitations, emails etc. as a result of being entered into the MMS. We have purposely maintained a separate platform, on a different server to avoid peers being inundated with emails or information unrelated to the PFSP. They may occasionally receive a peer impact survey, or important programmatic information, but only on a very limited basis. (It is worth noting however, that if a peer has signed up for a newsletter, for research updates or made a contribution, they may receive emails from the Reeve Foundation just like people who signed up for research updates.)

We understand that "paperwork" isn't a whole lot of fun, but it is critical to the success of the PFSP and, ultimately, to our ability to do what we all want to do -- MENTOR. If you need a refresher please contact your regional coordinator for a tutorial.

We’re more than happy to help!

A Reeve Foundation Fact Sheet on Religion and People with Disabilities (PDF)

A Reeve Foundation Fact Sheet on Adjustment to SCI (PDF)

A Reeve Foundation Fact Sheet on Aging with SCI (PDF)

A Reeve Foundation Fact Sheet on Caregivers PCAs Respite (PDF)

A Reeve Foundation Fact Sheet on SCI Autobiogs or Biogs (PDF)

A Reeve Foundation Fact Sheet on SCI Chat Rooms (PDF)

A Reeve Foundation Fact Sheet on SCI Research (PDF)

A Reeve Foundation Fact Sheet on SCI Tutorial 101 (PDF)

A Reeve Foundation Fact Sheet on SCI Videos (PDF)

A Reeve Foundation Fact Sheet on Brain and Spinal Cord Tumors (PDF)

A Reeve Foundation Fact Sheet on Deep Vein Thrombosis (PDF)

A Reeve Foundation Fact Sheet on Mindfullness (PDF)

A Reeve Foundation Fact Sheet on New Injury Top 10 Questions (PDF)

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.

CaringRoad.comCaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones. An online community of family caregivers.

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.

The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.

Determined 2 HealProvides helpful information for the newly spinal cord injured.

Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.

Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.

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.

National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

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.

National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.

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, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.

Red Cross Family Caregiving ResourcesInformation for caregivers.

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 CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.

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).

Well Spouse AssociationA national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

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.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.