Resources

One of our main goals is to ensure each and every person affected by SCI receives the information and resources they need when they need them. We help connect people to community and national resources to empower individuals to advocate for themselves to lead independent and meaningful lives.

Resource Referral

The SNERSCIC team provides ongoing informational referrals to people living with SCI, their families and friends, caregivers, and healthcare professionals, as well as PCPs and care providers at hospitals, rehabilitation facilities, and nursing facilities throughout New England.

Community News and Events

SCI Education Events, Social Events, Local Support Groups, Also Check Your Local Independent Living Center:

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New England SCI Toolkit (NESCIT)

Our objective was to develop a toolkit for SCI education to be utilized as a tool to help improve outcomes while decreasing the frequency of secondary complications associated with paralysis for people with SCI.

The New England SCI Toolkit (NESCIT) is an effort between designated facilities providing spinal cord injury (SCI) rehabilitation in New England to attempt to ensure patients throughout New England and beyond are receiving a similar coordinated standard of care. Further, this Toolkit aids in building capacity at facilities that may not treat patients with SCI often enough to have developed expertise.

Facilities utilizing NESCIT are encouraged to contribute to the communication between clinicians to share treatment ideas, problem solve, and discuss programmatic development. We encourage those who utilize NESCIT to share their processes and resources with other facilities to ensure continuity of care. The bottom line is to ensure that patients with SCI are taken care of, informed, and staying healthy.

THIS TOOLKIT DOES NOT PROVIDE DIRECT MEDICAL ADVICE.

It is intended for educational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment from a licensed physician. 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, dial 911 immediately.

Patient/Family/Caregiver Education

Patient/Family/Caregiver Education

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.

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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.

Minimum Requirements:

  • 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.

Recommended Resources:

Autonomic Dysreflexia

Autonomic Dysreflexia

All care providers will identify episodes of autonomic dysreflexia (AD) and provide appropriate intervention. Intervention will include identifying and removing noxious stimuli, providing medical care as indicated, and monitoring patient’s status.

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2.1 STANDARD: All care providers will identify episodes of autonomic dysreflexia (AD) and provide appropriate intervention. Intervention will include identifying and removing noxious stimuli, providing medical care as indicated, and monitoring patient’s status.

Minimum Requirements:

  • Facility has an AD policy and procedure or guideline in place
  • All care providers are trained to identify signs and symptoms of AD
  • All care providers are trained to follow facility policy and procedure on AD
  • All care providers will understand the causes of AD for prevention
  • Staff competency conducted for all care providers

Recommended Resources:

2.2 STANDARD: Refer to STANDARD 1: Patient/Family/Caregiver Teaching

Recommended Resources:

Skin Care

Skin Care

Patients with existing pressure ulcers will receive appropriate treatment to decrease severity of existing ulcers and prevent the development of new ulcers.

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3.1 STANDARD: Patients with existing pressure ulcers will receive appropriate treatment to decrease severity of existing ulcers and prevent the development of new ulcers.

Minimum Requirements:

  • Facility has a skin care policy and procedure or guideline in place
  • Staff competency conducted for appropriate providers for prevention and standardized assessment of risk
  • All care providers are trained to follow facility policy and procedure/guidelines on skin care
  • Site-specific skin management program encompassing assessment, prevention and treatment
  • Access to certified wound care specialist (WOCN) (for most up-to-date evidence-based care)
  • Process in place for measuring outcomes

Recommended Resources:

3.2 STANDARD: Patients taking part in inpatient rehabilitation will be free from new pressure ulcers throughout their stay. All disciplines involved in patient care will take part in the education and prevention of pressure ulcers.

Minimum Requirements:

  • Facility follows professional standards of care for treatment of existing ulcers, such as Clinical Practice Guidelines for Prevention and Management of Pressure Ulcers per WOCN Society
  • Staff competency conducted for appropriate providers for standardized assessment regarding identification and treatment of pressure ulcers
  • see 3.1

3.3 STANDARD: Refer to STANDARD 1: Patient/Family/Caregiver Education

Recommended Resources (in addition to Standard 1 resources):

Bladder Management

Bladder Management

Upon admission, each patient will have an assessment of bladder function. A bladder management program will be initiated and followed for all patients taking part in rehabilitation in order to resume regular and complete emptying of the bladder for urinary system health.

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4.1. STANDARD: Upon admission, each patient will have an assessment of bladder function. A bladder management program will be initiated and followed for all patients taking part in rehabilitation in order to resume regular and complete emptying of the bladder for urinary system health.

Minimum Requirements:

  • Facility has a bladder management policy and procedure/guidelines in place
  • All appropriate care providers are trained to follow facility policy and procedure/guidelines on bladder management
  • All pertinent care providers are trained in appropriate technique and use of adaptive equipment for bladder emptying
  • Site-specific bladder management program in place encompassing assessment, intervention and ongoing management
  • Staff competency conducted for all direct care providers
  • Access to urologic assessment and monitoring as needed

Recommended Resources:

  • PVA Consumer Guide Bladder Management Following Spinal Cord Injury: What You Should Know* available for free download
  • PVA Clinical Practice Guideline Bladder Management for Adults with Spinal Cord Injury* available for free download
  • Fact Sheet: Bladder Care & Management

4.2. STANDARD: Staff members will be able to identify urinary complications and provide appropriate intervention.

Minimum Requirements:

  • All appropriate care providers are trained to identify signs and symptoms of urinary complications
  • Access to ongoing urologic assessment and monitoring to diagnose and develop treatment plans for urinary complications
  • Facility has a process in place for measuring and managing outcomes

Recommended Resources:

  • Institute for Healthcare Improvement: How-to Guide: Prevent Catheter-Associated Urinary Tract Infection* available for free download
  • PVA Consumer Guide Bladder Management Following Spinal Cord Injury: What You Should Know* available for free download
  • PVA Clinical Practice Guideline Bladder Management for Adults with Spinal Cord Injury* available for free download
  • Info Sheet: Bladder Care and Management
  • MSKTC Factsheet Surgical Alternatives for Bladder Management Following SCI available for free download

4.3. STANDARD: Individuals, their family members and caregivers taking part in inpatient rehabilitation for SCI will receive appropriate education in bladder management techniques to maximize functional independence and minimize secondary health conditions.

Minimum Requirements:

  • Family/caregiver/patient training on bladder management techniques and use of adaptive equipment during inpatient rehabilitation
  • Family/caregiver/patient training on identification of signs and/or symptoms of urinary complications and possible interventions, including seeking medical attention
  • Family/caregiver/patient competency established via verbal recall and/or demonstration

Recommended Resources:

  • Institute for Healthcare Improvement: How-to Guide: Prevent Catheter-Associated Urinary Tract Infection* available for free download
  • PVA Consumer Guide Bladder Management Following Spinal Cord Injury: What You Should Know* available for free download
  • PVA Clinical Practice Guideline Bladder Management for Adults with Spinal Cord Injury* available for free download
  • Info Sheet: Bladder Care and Management
  • MSKTC Factsheet Surgical Alternatives for Bladder Management Following SCI available for free download
Bowel Management

Bowel Management

Each patient will have an assessment of bowel function. A bowel program will be initiated and followed for all patients in order to strive for regular and complete emptying of bowels.

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5.1 STANDARD: Each patient will have an assessment of bowel function. A bowel program will be initiated and followed for all patients in order to strive for regular and complete emptying of bowels.

Minimum Requirements:

  • Facility has bowel management policy and procedures/guidelines in place
  • All appropriate care providers trained to follow policy and procedure/guidelines on bowel management
  • All pertinent care providers are trained in appropriate technique and use of adaptive equipment for bowel emptying
  • Site-specific bowel management program in place encompassing assessment, intervention, and ongoing management
  • Access to bowel management assessment and monitoring as needed

Recommended Resources:

5.2 STANDARD: Each patient will have an assessment of bowel function. A bowel program will be initiated and followed for all patients in order to strive for regular and complete emptying of bowels.

Minimum Requirements:

  • All appropriate care providers trained to identify signs and symptoms of bowel dysfunction
  • Ongoing bowel monitoring and assessment to diagnose and develop treatment plans for bowel complications
  • Process in place for measuring outcomes

Recommended Resources:

 

5.3 STANDARD: Individuals, family members and caregivers taking part in inpatient rehabilitation for SCI will receive appropriate education in bowel management techniques to maximize functional independence and minimize secondary health conditions.

Minimum Requirements:

  • Patient and/or caregiver competency established via verbal recall and/or demonstration
Sexual Health and Fertility

Sexual Health and Fertility

Individuals and their appropriate family member(s) or partner(s) will be offered age specific education and counseling regarding medical and psychosocial issues related to sexual health and function after an SCI.

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6.1. STANDARD: Individuals and their appropriate family member(s) or partner(s) will be offered age specific education and counseling regarding medical and psychosocial issues related to sexual health and function after an SCI.

Minimum Requirements:

  • Facility has a process to assess/educate re: sexual health in SCI- “Who says what when?”
  • Maintain an open discussion and provide access to education about sex in both formal and informal settings throughout the treatment continuum
  • Care providers may offer referral to the appropriate rehabilitation professional in collaboration with the medical provider

Recommended Resources:

Additional Resources:

These sites may contain health- or medical-related materials that are sexually explicit. If you find these materials offensive, you may not want to use them. The site and the content are provided on an “as is” basis.

Spasticity

Spasticity

Staff members will identify spasticity and provide intervention as appropriate. Intervention will include identifying and addressing potential triggers, providing medical and therapeutic care as needed and monitoring patient’s status.

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7.1. STANDARD: Staff members will identify spasticity and provide intervention as appropriate. Intervention will include identifying and addressing potential triggers, providing medical and therapeutic care as needed and monitoring patient’s status.

Minimum Requirements:

  • Facility has a process to educate staff members re: the identification, evaluation and management of spasticity using an inter-disciplinary approach
  • Staff competency conducted for all care providers
  • Maintain an open discussion and provide access to education about spasticity in both formal and informal settings throughout the treatment continuum
  • Care providers may offer referral to the appropriate rehabilitation professional in collaboration with the medical provider

Recommended Resources:

General Resources

One-Stop Shopping

One-Stop Shopping

Government Resources

Government Resources

Community Resources

Community Resources

Support Groups

Support Groups

Exercise and Fitness

Exercise and Fitness

Healthcare

Healthcare

Information For Healthcare Providers

Information For Healthcare Providers

Assistive Technology (AT)

Assistive Technology (AT)

Travel and Recreation

Travel and Recreation

Transportation

Transportation

Housing

Housing

Employment

Employment

Caring For The Caregiver

Caring For The Caregiver

Cure Research

Cure Research

Spaulding Rehabilitation Hospital Resources

Spaulding Rehabilitation Hospital Resources

NESCIT Videos

The New England SCI Toolkit (NESCIT) video series were created to complement the NESCIT Modules related to Autonomic Dysreflexia and Skin Care in SCI. These videos bring together experiences and knowledge from people living with spinal cord injuries and spinal cord injury clinicians. We hope that you, your caregivers and clinicians new to SCI find these videos to be a good primer to the SCI field and that you find it useful in your daily lives.

Autonomic Dysreflexia

Skin Care

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