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Spinal Cord Injury Paralysis Resource Center

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Reeve Foundation Peer and Family Support Program

Partnerships

We know that no one hospital, foundation or mentor program can fill the national void in support, services and resources the paralyzed community is experiencing. We believe partnering with existing programs is the best way to reach our goal of a true national mentoring program. Our community is fortunate to have so many wonderful programs already mentoring in various parts of the country. We are "networking" these myriad of mentor programs and institutions interested in offering mentoring into a national network.

Since one of the pillars of a successful mentoring program is matching the right peer mentor with the peer, it becomes hugely important to have access to the most diversified pool of mentors that include not only people living with paralysis, but family members and caregivers as well. Being a partner of the Reeve Foundation Peer & Family Support Program's mentor network allows you to have access to vastly more peer mentors than you might have in your current pool of mentors in your coverage area. Access to such a diversified set of mentors allows the peer to have a custom-tailored fit with their mentor. All program mentors are trained and certified under the same process, so you know the quality of peer mentor you are using.

Ultimately, the beneficiary of these partnerships is the paralyzed community: nationally and locally. The Reeve Foundation benefits from working with well-established mentoring programs that are well recognized and respected in their community, have knowledge of their local community, has local access to a pool of talented mentors, along with so many other programmatic assets and characteristics. The partner benefits from working with the Reeve Foundation and having access to a large, and growing pool of well trained, certified, diverse and geographically dispersed peer mentors. The nation, the state, and the local community all benefit from this partnership.

PFSP Partners

Partnering will also help to elevate the importance of a peer-to-peer relationship and network, and demonstrates that not only is peer mentoring a nice thing to have, but it is a necessary resource in the paralyzed community. We encourage you to read more about our partnerships and contact us, as we are actively seeking potential partners.


Reeve Foundation Peer & Family Support Partners
       
  Ann Arbor Center for Independent Living
Ann Arbor, MI
  Hospital for Special Care
Hartford, CT
       
  Arizona Spinal Cord Association
Phoeniz, AZ

Jacksonville, FL
  Magee Rehabilitation
Philadelphia, PA
       
  Baylor Health Care System
Dallas, TX
  Neuro Fitness Foundation
Dallas, TX
       
  Brooks Rehabilitation
Jacksonville, FL
  NeuroWorx
Salt Lake City, UT
       
  Backbones
Portland, OR
  NextStep
Los Angeles, CA
       
  Craig Hospital
Denver, CO
  NextSteps Chicago
Chicago, IL
       
  Courage Kenny Rehabilitation Institute
Minneapolis, MN
  Sanford Health
Sioux Falls, SC
       
  The Greater Kansas City Spinal Cord Injury Association   Soldiers Stopping Suicide
       
  HeadNorth
San Diego, CA
  QUAD Foundation
San Diego, CA
       
  University of Maryland Rehabilitation & Orthopaedic Institute
Baltimore, MD
   
       

What are some of the benefits of partnering?
- The ability of a partner that does not currently offer mentoring, to begin providing mentoring at little to no cost, and without dedicating staff resources

- The ability of a partner that does offer mentoring to enhance and/or to expand their current program at no additional cost, and without dedicating staff resources

- A standardized national training curriculum developed and managed by the Reeve Foundation. The training curriculum will be reviewed and 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 Paralysis Resource Center (PRC) This will help to equip the partner and their peer mentors with more national information and resources, and complement the local knowledge of their community

- Being a part of a national campaign to promote peer mentoring

- Direct access to Reeve Foundation Regional Coordinators that provide mentor/peer management and administrative functions like peer/mentor matching, data collection, reporting, etc.

- Greatly improved opportunity to find the most appropriate peer/mentor matches by accessing the network within the state, region, and nation

- Optimal utilization of the partner's peer mentors through additional mentoring opportunities on a national level, through the PFSP's national outreach.

- Access to an online national Peer Mentor community platform -- "MentorNet" -- which serves as a mentor-to-mentor discussion forum

- Access to the Mentor Management System, a management platform housed, maintained and serviced by the Reeve Foundation to securely control all program records, peer mentors, peers and peer/mentor encounters

- An on-line re-certification program managed by the Reeve Foundation that is delivered easily and quickly and ensures mentors maintain the highest level of training

- The promotion of partner throughout the state and nation as a Reeve Foundation partner

- Additional programmatic components to include training for family members and caregivers as peer mentors

- Access to a larger and more diverse pool of mentors and peers

- An evaluation and surveillance process to assess peer satisfaction and identify emerging needs and trends to help tailor our mentor process and re-certification content

Who are partner candidates?
We purposely do not try to define a partner. We are interested in talking to hospitals, healthcare facilities, foundations, support groups, independent mentor programs or other organizations that currently offer mentoring or would like to offer mentoring.

To get a sense of what is required by both sides review a sample partnership agreement. It can help potential partners consider some of the questions a partner may have before meeting to discuss partnering.

We realize that partnership agreements may need to be modified for a number of reasons. We are open to discussing the possible modifications however, there are core aspects of the program that cannot be modified like the training and certification requirement or matching philosophy.

If you would like to discuss partnerships please email bcawley@christopherreeve.org.

Download our latest PDF brochure to help you further familiarize yourself with the PFSP.

A Reeve Foundation Fact Sheet on Pediatric SCI (PDF)

A Reeve Foundation Fact Sheet on Wheelchair and Equipment Donations (PDF)

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) - English

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

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.

Assistive Technology (AT) Resources: Proper fit of a wheelchairThe National Academy of Neuropsychology (NAN) has compiled a list of various Assistive Technology (AT) resource agencies around the nation, including resources on driver education, independent living, state agencies, mobility equipment and more.

American Association of SCI Psychologists and Social WorkersPromote research to improve quality of care and works to improve skills and techniques of members.

Association of University Centers on Disabilities61 centers of excellence for developmental disabilities

Aquila Wheelchair CushionsThe Aquila Corporation offers a line of alternating pressure wheelchair cushions along with a two-zone static manual inflate cushion. These cushions are designed to meet pressure relief needs thereby helping to prevent pressure sores from developing down the road.

BrunoBruno Independent Living Aids has become known for its: power chairs, scooters, high quality stair lifts and Turning Automotive Seating.

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.

ColoursFor people who like to think outside the box, check out the chairs put out by Colours In Motion.

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.

Education/TrainingAssociation on Higher Education and Disability (AHEAD).

e.motionA standard manual wheelchair can get extra help with special rims containing small yet powerful motors.

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.

HEATHGeorge Washington University’s Heath Resource Center is a national clearinghouse on postsecondary education for people with disabilities. See their 2006 Financial Aid for Individuals with Disabilities

Frog LegsFrog Legs Inc. makes a product that makes mobility a much smoother experience. A flexible hinge allows the castor wheels on wheelchairs to move more easily over bumps and obstacles thereby reducing the impact normally felt by the person seated. Think of them as shock absorbers for your wheelchair.

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.

Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.

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 Jay CushionSunrise Medical produces a cushion for wheelchairs called The Jay which is filled with a slow-flowing gel. The Jay addresses posture, skin and functional needs.

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.

The Office of Special Education and Rehabilitative ServicesThe Office of Special Education and Rehabilitative Services (OSERS) is committed to improving results and outcomes for people with disabilities of all ages.

The Office of Special Education ProgramsSupports numerous programs that improve results for children.

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.

PermobilPermobil produces chairs ideal for those requiring the flexibility to constantly change positions. Technology and comfort combine to allow for active sitting.

Pride MobilityFor tight and precise control, Pride Mobility Products Corporation makes the very popular Jazzy Power Chairs.

Rehabilitation Institute of Chicago: Wheelchair Seating & PositioningHaving mobility is an important factor in being able to lead a productive and fulfilling life. If an individual is unable to walk, an appropriate mobility base and seating system are imperative to enhance the ability to interact and perform functional skills.

ROHOThe ROHO is a brand of cushion seats designed for protection and comfort. Each cushion is based on a support system of evenly distributed air.

Red Cross Family Caregiving ResourcesInformation for caregivers.

The Spinal Cord Injury Information Network: Wheelchairs & SeatingInformation on seating and positioning.

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.

Spinlife.comOnline durable medical equipment (including wheelchairs and cushions).

SportaidOnline catalog for durable medical equipment.

Through the Looking GlassThe purpose of the National Parent-to-Parent Network at Through the Looking Glass is to connect parents, as well as those who are considering becoming parents, with others who may have shared similar experiences or faced common barriers as parents with disabilities.

TiLiteTitanium wheelchairs; lightweight and strong.

University of Alabama at BirminghamOffers an information sheet (Info Sheet #11) on bladder care and management.

UCP Wheels for HumanityA non-profit organization that refurbishes donated wheelchairs and hand fits them to children and adults with disabilities in developing nations.

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.

Wheelchairjunkie.comA resourceful and opinionated website owned and operated by self-described "power chair gonzo" Mark E. Smith, who also designs power chairs for Pride Mobility Products. Says Smith, "WheelchairJunkie.com is about mobility, not manufacturers, so the voices expressed here represent only users."

WheelchairNetA federally funded virtual community for people who have an interest in wheelchair technology.

Wheelchair FoundationOver 100 million of the world's citizens today are deprived of mobility because of warfare, disease, disaster or advanced age. The wheelchairs they need simply to get across the street - or across the room - are out of reach. The Wheelchair Foundation believes that these people deserve the independence and dignity that comes with owning a wheelchair, regardless of their nationality. This is a nonprofit organization leading an international effort to deliver a wheelchair to every man, woman and child in the world who needs one. For those individuals, the Wheelchair Foundation offers freedom, self-reliance, mobility and hope.

Whirlwind Wheelchair InternationalWhirlwind Wheelchair International (WWI) is the communications hub of the Whirlwind Wheelchair Network of independent wheelchair-producing workshops in developing countries. Founded in 1989 as the Wheeled Mobility Center (WMC), WWI's primary mission is 1) to teach wheelchair riders in developing countries to design, build, and repair their own wheelchairs; 2) to enable rider/builders to create businesses for the manufacture and distribution of wheelchairs to others; and 3) to foster the ever-widening Whirlwind Network of rider/builders around the world who exchange ideas for the continuous improvement of wheelchair design.

World Wide Wheelchairs & Used Medical EquipmentScott Dier began this company in July 1998. He wanted to sell a hearing aid on the Internet. Then people started asking about wheelchairs and other medical equipment! Mr. Dier then proceeded to look for equipment around North America and found many items available. World Wide Wheelchairs exploded into a company that was needed throughout the world! They have sent medical equipment and wheelchairs to India, Saudi Arabia, Chile, Japan, Mexico, Jamaica, Canada, England, Brazil and all over the U.S. and the U.S. Military.

Wheelchair AccessoriesClick on this link to see how you can accessorize your chair or scooter and improve matters. Backpacks, cupholders, trays, canopies and umbrellas are just a few examples.

ASK OUR EXPERTS
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Get your free copy of the Paralysis Resource Guide
Paralysis Resource Guide

This FREE 442 page book is a comprehensive information tool for individuals living with paralysis and for their caregivers. Request or download your copy now!

 

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.