The New England SCI Toolkit (NESCIT) is a collaborative effort between facilities providing spinal cord injury (SCI) rehabilitation in New England. This collaboration ensures patients throughout New England and beyond are receiving the same coordinated standard of care wherever they receive rehabilitation. Further, this Toolkit will aid in building capacity at facilities that may not treat patients with SCI often enough to have developed expertise.
Our objective was to develop a toolkit for SCI education and care designed as an educational tool for use after acute rehabilitation to help improve functional outcomes while decreasing the frequency of complications associated with paralysis for people with SCI.
Facilities participating with NESCIT will contribute to the communication between clinicians to share treatment ideas, problem solve, and discuss program development ideas. We encourage NESCIT Network and others, to share their processes and resources with other facilities to ensure consistency of care.
Full SCI Toolkit PDF
THIS TOOL DOES NOT PROVIDE MEDICAL ADVICE. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Never ignore professional medical advice in seeking treatment because of something you have read in the Toolkit. If you think you may have a medical emergency, immediately dial 911.
1. Patient/Family/Caregiver Education
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1.1.STANDARD: Individuals, their family members and caregivers taking part in inpatient rehabilitation for spinal cord injury (SCI) will receive appropriate education to maximize functional independence and minimize secondary health conditions. Education will encompass all areas of SCI rehabilitation and will be included in all standards listed.
- Core educational areas: autonomic dysreflexia, bowel/bladder, SCI anatomy & physiology, skin care, respiratory care, sexuality, medical complications, psychosocial, home modifications, equipment needs, rehabilitation team roles, community reentry (including accessibility), medications, discharge planning, nutrition & lifestyle (exercise), spasticity management and contracture prevention, pain, driving, recreation, community and educational resources, assistive technology, vocational rehabilitation, mobility, self-care, self-advocacy, circulatory (DVT, etc.), heterotopic ossification (HO), health care maintenance (preventative care, follow up with outpatient appointments, etc.)
- Patient and/or caregiver competency established via verbal recall and/or demonstration
- Yes, You Can! A Guide to Self-Care for Persons with Spinal Cord Injurypublished by theParalyzed Veterans Association (PVA). The book can be ordered online at http://tinyurl.com/ksa3z5e
- PVA Consumer Guidelines*are available on multiple topics and are free downloads at http://tinyurl.com/mfqnnj2
- PVA Clinical Practice Guidelines* are available on multiple topics and are free downloads at http://tinyurl.com/oxozdtm
- Paralysis Resource Center, Christopher and Dana Reeve Foundation and toll-free 1-800-225-0292. Information is offered in multiple languages
- Connecticut Resource Directory & patient packet by Spinal Cord Injury Association of Connecticut, a Chapter of United Spinal at www.sciact.org
- Peer mentor programming offered throughUnited Spinal local chapters, call 203-284-2910 in Connecticut or 781-933-8666 in Massachusetts
- Stepping Forward Staying Informed Consumer Education Program and Knowledge in Motion webcasts (available on NERSCIC website) http://tinyurl.com/NERSCICvids
- SCI Guide www.sciguide.org – including Top Sites for Newly Injured and Best of the Best sites
- Inpatient and outpatient support groups including family/care giver support groups
- Patient Education Manual(site-specific – contact Diana at DPernigotti@gaylord.org for a Gaylord copy and Joanne Morello at Jmorello@northeastrehab.com for a copy from Northeast Rehabilitation)
- National Institute of Health Physical Exam Recommendations http://tinyurl.com/335k9n
- Model Systems Knowledge Translation Center SCI Factsheets (available onlineas a complete booklet http://tinyurl.com/pth9kky or separate topics at http://www.MSKTC.org)
- If injury is T8 or above, poster on AD education fromthe PVAand Reeve Foundation partnership http://tinyurl.com/j7sw6kj