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Spinal Cord Injury Paralysis Resource Center

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Reeve Foundation Peer and Family Support Program

Sample Reeve Foundation Peer & Family Support Program Partner Agreement

Download the PDF.

Introduction
The Reeve Foundation is a nationally recognized leader within the paralyzed/spinal cord injured (SCI) community. The Reeve Foundation is dedicated to curing spinal cord injury through expert funding of innovative research, and focuses on improving the quality of life for people living with paralysis through grants, information and advocacy.

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
- Increase the amount of mentoring across the country
- Increase the utilization of trained mentors
- Provide a standardized baseline of training to ensure a level of consistency across the country
- Provide re-certification to ensure mentors are continually updated with important and new information
- Ensure mentors have the powerful combination of their own life experiences, local knowledge of resources, and access to information and knowledge at the national level
- Increase the knowledge of secondary conditions and health and wellness
- Collect quantifiable data and anecdotal information to clearly demonstrate the importance of peer mentoring to the paralyzed community

Agreement
This Partnership Agreement has been developed to articulate the benefits and responsibilities of joining the Reeve Foundation PFSP network. As an existing peer program wishing to join the PFSP network, you will in effect engage in a limited partnership with the Reeve Foundation for the purposes of peer mentoring. This partnership will offer numerous benefits, along with a few requirements.

Benefits
The ultimate beneficiary of this partnership is the paralyzed community, both national and local. The Reeve Foundation benefits from working with well-established mentoring programs that are well recognized and respected in their community, have knowledge of the local community, has local access to a pool of talented mentors and so many other programmatic assets and characteristics. We believe that the proposed partner, the local community and the state of the proposed partner will also benefit from this partnership.

What are some of those benefits?
- A standardized training curriculum developed and managed by the Reeve Foundation. The content of the training will be reviewed annually and updated based on feedback from mentors, clients and partners. Partner input is desired and needed to achieve a "best in class" program.
- Enhanced training on the information and resources provided by the Reeve Foundation's PRC. This will help to further equip each mentor with more national information and resources complementing their local knowledge of their community.
- Access to the PRC Information Specialists and the largest lending library collection on paralysis and spinal cord injury.
- A national campaign to promote peer mentoring and to increase the number of people utilizing mentoring by establishing relationships with hospitals, rehab centers, support groups and other like-minded organizations across the nation.
- A Regional Coordinator (RC) to provide mentor/client management…covering administrative functions like client/mentor matching, data collection, Human Resources control, incident reporting etc.
- Greater opportunity to find the most appropriate client/mentor matches by using the network within the state, region, and nation.
- Optimal utilization of the partner's mentors through additional mentoring opportunities via the PFSP network across the nation.
- Access to an online national Peer Mentor community platform. "MentorNet" is housed, maintained and serviced by the Reeve Foundation to deliver important and timely info on topics like health and wellness and secondary conditions to the entire mentor network. It also serves as a Mentor-to-Mentor discussion forum.
- Access to the Mentor Management System, a platform housed, maintained and serviced by the Reeve Foundation to securely control all records of Client/Mentor interactions.
- An annual on-line re-certification managed by the Reeve Foundation that is delivered easily and quickly and ensures mentors maintain the highest level of training.
- An Evaluation and surveillance process to assess client satisfaction and identify emerging needs and trends so as to tailor our mentor process and re-certification content.
- Access to new and more diverse peer mentors due to the Reeve Foundation's promotion of the PFSP.
- Access to a larger client pool due to the Reeve Foundation's promotion of the PFSP.
- The promotion of the proposed partner throughout the state and nation as a Reeve Foundation partner.
- Additional programmatic components to include training for family members and caregivers as mentors.
- Additional programmatic components to include training for military and veteran mentors.

Responsibilities
As a Reeve Foundation partner (henceforth referred to as The Partner) and the Reeve Foundation, shall have the following responsibilities:

The Partner
- Entering into a partnership with the Reeve Foundation signifies that The Partner agrees with the PFSP's mission statement and stated goals, understanding that the mission statement and goals may change over the lifetime of the program.
- Participation as The Partner in the PFSP is voluntary and without compensation. The partnership does not guarantee or imply other working relationships with The Reeve Foundation or entitle The Partner to unrelated Reeve Foundation information, services, resources, or access to other Reeve Foundation staff.
- The partnership does not preclude The Partner from working with The Reeve Foundation in other capacities of a separate agreement.
- The Partner agrees to follow all rules, policies and procedures of the PFSP.
- The Partner has the opportunity to be represented on a PFSP Partners' Steering Committee and to provide input regarding the program. However, the PFSP reserves the right to change policies and procedures and the direction of the program at will and without The Partner's or the committee's approval.
- The Partner is responsible for maintaining the confidentiality of all proprietary or privileged information to which the Partner may be exposed during the partnership, whether this information involves PFSP personnel, employees, volunteers, constituents, beneficiaries (clients) or overall operations. Likewise The RF PFSP is responsible for maintaining the confidentiality of all proprietary or privileged information to which the PFSP may be exposed during the partnership, whether this information involves The Partners personnel, employees, volunteers, constituents, beneficiaries (clients) or overall operations. The Partner and The Reeve Foundation understand that failure to maintain confidentiality may result in termination of the partnership relationship or legal action.
- The Reeve Foundation PFSP training and materials are proprietary and may not be shared with personnel outside of The Partner's organization without the express written approval of the Reeve Foundation. All training and materials provided by The Partner are proprietary and may not be shared with personnel outside of the Reeve Foundation without the express written approval of The Partner.
- The Partner agrees to voluntarily participate in meetings hosted by the Reeve Foundation, and cover any of their own related expenses.
- Either party may terminate this partnership at any time with or without cause, and with a 30-day written notice.

Clients
-- The Partner agrees to assist in identifying and recruiting clients. A client is defined as a person who is living with paralysis, family members and their support networks and caregivers.
- The Partner agrees to refer clients. A referral is defined as basic contact information for a client, such as name, email, and phone.
- The partner agrees to make a concerted effort to recruit XX clients on an ongoing annual basis.
- Partner staff or liaison will facilitate connecting the respective PFSP Regional Coordinator with the potential client

Peer Mentors
- The Partner agrees to recruit mentors as required to support ongoing mentor operations,
- The Partner agrees to register its existing mentors, as well as any newly recruited mentors for PFSP training and certification ASAP (within a mutually agreed and reasonable timeframe),
- The Partner agrees to accept requests for local or remote peer mentoring,
- The Partner agrees that mentors will:
-- Submit to the PFSP background check (at PFSP's expense) regardless of whether they were already checked through The Partner's program,
-- Complete all initial training and certification,
-- Complete annual re-certification within required timeframes,
-- Abide by other referring hospitals' and medical centers' access and visitation policies,
-- Acknowledge that they are volunteers and are not paid employees, and will be reimbursed for only for pre-approved expenses.

Peer Mentor Characteristics
- An individual who has been injured at least one year,
- Has a positive outlook,
- Is thriving in his/her professional and/or private life,
- Has a desire to give back,
- Has time to give to the program,
- Can maintain confidentiality,
- Is knowledgeable about the local rehab environment and resources, or is willing to learn,
- Has good listening skills,
- Completes all administrative requirements.

Peer Mentor Encounters
- The Partner agrees that a hospital visit request will be fulfilled within 3-days of being matched,
- The Partner agrees that a client contact for a community visit must be scheduled within 5-days of being matched,
- The Partner agrees that Peer Mentors will use the PFSP forms, will follow the PFSP process, and will complete and file visit reports within 5-days of any visit.

Peer Mentor and Client Matching
The Partner agrees that every effort will be made to match a client with a peer mentor who:
- Is within an hour's travel of the mentor (if the location criteria cannot be met, the Regional Coordinator will use his/her best judgment in considering remote mentoring)
- Has the same level of injury
- Is the same gender
- Is the same approximate age
- Became paralyzed in the same or similar manner
- Has other criteria including hobbies and other interests and cultural background to optimize the match.

The Regional Coordinator (RC)
- The Partner agrees that the RCs, as employees of the Reeve Foundation, are responsible for managing the PFSP within their respective regions with management overview from the Reeve Foundation.
- The Partner agrees that the RC is responsible for accepting, processing and matching all mentor requests,
- The Partner agrees that the RC is responsible for tracking all peer mentor visits.
- The Partner agrees that the RC is responsible for processing all mentor requests initiated by The Partner's program staff. The RC will utilize the Reeve Foundation matching policy in consultation with The Partner's program staff to optimize the match.
- The Partner agrees that if The Partner prefers to initiate in-hospital matches themselves, that The Partner will use the mutually agreed upon matching philosophy and share the appropriate info for PFSP tracking.

The PFSP MentorNet
- The Reeve Foundation will host, maintain, and provide an online discussion group called the MentorNet.
- The Partner agrees that each peer mentor is required to become a member of the PFSP MentorNet.
- The Partner agrees that each peer mentor will participate in the PFSP MentorNet process for the benefit of all peer mentors in the program.

Branding
- The Reeve Foundation will allow the use of the Reeve Foundation and PFSP logos for use within provided guidelines.
- The Partner agrees that it is not expected or required to assume the Reeve Foundation PFSP name.
- The Partner agrees that it must obtain The RF's written approval to use "Reeve Foundation" and "Peer & Family Support Program" branding.
- The Partner agrees that all Reeve Foundation logos must adhere to Reeve Foundation media placement guidelines.
- The Reeve Foundation must have approval for any use of The Partner's logo and adhere to The Partner's media placement guidelines.
- The Reeve Foundation has the final say as to whether or not Reeve Foundation and PFSP branding and logos are used and how they are used.

Promotion
The partner agrees to, but is not limited to:
- Post flyers, display materials, include peer mentoring information in discharge paperwork, etc.
- Send email blasts to partner's various email lists
- Publish at least 1 "Peer" story annually in partner's publication(s)
- Make marketing, social media and community outreach staff available to meet and discuss marketing opportunities and client recruitment efforts
- Agree to one in-service presentation per year

Evaluations and Surveillance
- The Reeve Foundation agrees to share all evaluations from the PFSP's training programs, surveying of mentors and clients, anecdotal information and access to outcome reports with The Partner on a regular basis, and if requested, within a reasonable timeframe.
- The Partner agrees that it must obtain The Reeve Foundation's written approval to use to use /share any of this information with anyone outside the PFSP and/or the Reeve Foundation.

Note: The actual agreement will have effective date listed and include signatures from the representatives at the Reeve Foundation and partnering organization.

Download the PDF.

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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.

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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.

The information provided in the Paralysis Resource Center was supported by Cooperative Agreement number 1U59DD000838-01 from the Centers for Disease Control and Prevention (CDC). Its contents are solely the responsibility of the Reeve Foundation and do not necessarily represent the official views of the CDC.