New Spinal Cord Injury/Disease Onset
- 1. What is SCI
- 2. Initial spinal cord injury/disease information
- 3. Once SCI/D rehabilitation begins
- 4. Going home after SCI/D Rehab
1. What is SCI
1.1. Understanding Spinal Cord Injury-Streaming Video on Spinal Cord Injury
The Understanding Spinal Cord Injury video on spinal cord injury was developed by the Shepherd Center to help educate patients and families on their new injury and on post-trauma care.
In this interactive streaming video presentation you will learn in general terms what levels of function and sensation are likely to be effected per level of injury. You will also start to see the path forward by connecting with patient advocacy groups such as United Spinal Association (NSCIA is referenced in the video but was fully merged into United Spinal). The website also contains a companion booklet.
DVD in hard copy is also available HERE.
1.2. Understanding Spinal Cord Injury - Model Systems Knowledge Translation Center Factsheets
These Model Systems Knowledge Translation Center (MSKTC) factsheets are intended to be a starting point for understanding the normal functions of the spinal cord and how those functions might change after spinal cord injury (SCI). The impact of injury is different for everyone, so it is not possible to answer every question of interest. However, these fact sheets will answer common questions. The factsheets are produced through a collaboration between the MSKTC and the SCI Model Systems. These materials undergo expert and consumer reviews to ensure they are up-to-date, evidence-based, and consumer-friendly.
2. Initial spinal cord injury/disease information
2.1. Guidelines for Selecting a Rehabilitation Facility
Guidelines for Selecting a SCI Rehab Facility
It is very important to be confident about the quality of care you or a loved one will receive when entering a rehabilitation program. Very few people have prior experience with rehabilitation or the effects of a spinal cord injury (SCI), thus, assessing the quality of a rehabilitation program is difficult.
Although the final decision will ultimately depend upon individual circumstances such as insurance and location, all rehabilitation programs have features which can be evaluated, regardless of your prior knowledge of rehabilitation or SCI.
It is vital to select a high quality rehabilitation program with skilled professionals to help a newly injured person develop the skills needed to maintain physical and emotional health throughout his/her lifetime.
A Quick Word about Rehabilitation Programs
In order to develop and maintain quality services for individuals with spinal cord injuries, rehabilitation staff and programs MUST specialize in treating SCI. This expertise is best acquired and maintained when staff members treat people with SCI on a regular basis. High quality rehabilitation programs are often located in facilities devoted exclusively to providing rehabilitation services, or in hospitals with designated SCI units.
In-patient SCI rehabilitation programs have features which distinguish them from the hospital programs where most people receive initial treatment. Rehabilitation programs are designed to serve people with a wide variety of skills and must address complex social and community issues. A rehabilitation team comprised of specialized medical personnel is used to accomplish these goals.
Teams should include social workers, occupational and physical therapists, recreational therapists, rehabilitation nurses, rehabilitation psychologists, vocational counselors, nutritionists and other specialists. The team is usually directed by a physiatrist, a physician specializing in physical medicine and rehabilitation (see What is a Physiatrist?). Team members are jointly responsible for working with individuals and their families to develop effective rehabilitation and discharge plans.
The team should assign a program manager who will function as a contact with the rest of the team. This contact should meet with the person undergoing rehabilitation on a regular basis to discuss the rehabilitation plan and to address personal or family concerns.
Rehabilitation programs and acute care units may also differ in their emphasis on family and patient participation. Although many factors can contribute to someone's successful return to the community following a spinal cord injury, the education and active involvement of the newly injured person and the family is crucial. Rehabilitation programs should focus on maximizing a person's ability to be independent and should assist in making decisions about treatment and goals.
The following questions were developed to assist you in your decision making process. They can be used as a checklist to obtain the information required to make an informed decision when choosing a rehabilitation program.
SCI Program Checklist
Peer support and contact with others who have a SCI can be extremely important in helping a person adjust to the injury. Peer support is generally most helpful and accepted when people share similar problems and issues. This is an especially important consideration when choosing programs for women. It is often difficult for women to find peer support because the incidence of SCI among women is much lower than it is for men.
- Are the beds for people with SCI in the same area of the facility?
- Are there people in the SCI program of the same age and sex as the person considering admission?
- Do the people in the SCI program have similar levels and kinds of spinal cord injury e.g., quadriplegia, paraplegia, incomplete and complete?
- What is the average number of people admitted annually to the SCI program? (program staff should treat people with SCI on a regular basis to acquire and maintain expertise.)
- Is the SCI program accredited by the Commission on the Accreditation of Rehabilitation Facilities (CARF) or the Joint Commission on Accreditation of Healthcare Organizations (JCAHO)? Has it been designated as a Spinal Cord Injury Model Systems Center by the by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)? Is the SCI program part of a SCI rehabilitation system operated by the state?
- Are there treatment specialists in the SCI program who speak the primary language of the individual seeking treatment?
- Will the treatment team develop a rehabilitation plan with both short and long term goals?
- Will an experienced case manager be assigned to help family members obtain medical payments and other benefits from public and private insurance?
- Will a team member be assigned to coordinate treatment and act as a contact for staff and family members?
- How do the facility's outcome measures compare with other facilities under consideration?
Staffing/Rehabilitation Program Elements
- Is the physician in charge a Physiatrist? If not, what credentials does he/she have? How long has the physician in charge been directing programs specializing in SCI? Does the facility offer outpatient physiatry services throughout the lifespan?
- Is there physician coverage seven days a week? Twenty-four hours a day?
- Do the regular nursing staff and other specialists responsible for providing treatment in the SCI program have specific training in treating SCI? Is the nursing staff employed by the hospital or employed through an outside agency?
- Does the program ensure the availability of rehabilitation nursing and respiratory care on a twenty-four hour basis?
- Are there consultants available at the facility or nearby medical centers? These should include neurosurgery, neurology, urology, orthopedics, plastic surgery, neuropsychology, internal medicine, gynecology, speech pathology, pulmonary medicine, general surgery and psychiatry.
- How often and for how long each day will participants get treatment by specialists such as occupational and physical therapists? Treatment should be no less then three hours per day. Does the facility offer comprehensive, rehabilitation therapies including physical therapy, occupational therapy, speech therapy, and recreational therapy on an outpatient basis?
- Are other specialties such as driver education, rehabilitation engineering, chaplaincy, and therapeutic recreation available if needed?
- Are activities planned for SCI program participants on weekends and evenings?
- How much time is spent teaching SCI program participants and their families about sexuality, bowel and bladder care, skin care and other essential self-care activities?
- Does the SCI program offer training in the management and hiring of personal care assistants? If so, how much time is spent by staff on this topic?
Because incidence rates of SCI among children are relatively low, rehabilitation hospitals and programs usually do not maintain a separate program or unit exclusively for children with SCI. As an alternative, caregivers may consider facilities/programs which place children with SCI in rehabilitation units with other children with chronic disabilities. Hopefully, this will provide families and children with opportunities to share common experiences and information with each other, and may lead to the development of support networks in the community.
It is possible that children may be placed in units with other children who are too ill for rehabilitation. Children generally derive greater benefit if they undergo rehabilitation with other children who are actively involved in the rehabilitation process.
- Are the beds for children with spinal cord injuries in one area or in the same location as children with similar disabilities?
- Are children of the same sex and similar age currently in the program/facility?
- Is the physician in charge an individual with experience in rehabilitation? Does this physician have experience with children? If not, what are his/her qualifications? Do the other staff members specialize in pediatrics?
- How many children with SCI does the program/facility admit on an annual basis?
- Does the program/facility offer educational programs for children and young adults undergoing treatment? If not, does the facility coordinate tutoring programs with local schools? If so, who is responsible for payment?
- Are there child life or therapeutic recreation specialists on staff? (Child life specialists develop programs for children and families which strive to maintain normal living patterns and minimize the clinical environment. Therapeutic recreation specialists focus on teaching persons with disabilities new leisure and sports skills to maximize their independence).
- Are young siblings and friends allowed to visit the unit?
- Does the program/facility offer adaptive technology to help children communicate and learn?
- Is counseling available for siblings and families members?
- Is the equipment used by therapists, i.e. physical therapists and occupational therapists, appropriate for children?
- Does the facility/program provide patient education materials for children and family members?
- Is the physician who directs the program a board certified Pulmonologist or a Physiatrist? Does he/she have experience with SCI?
- Are ventilator users treated on the same unit?
- How long has the facility been providing treatment for ventilator users?
- If the treatment team determines that an individual cannot breathe independently, what kind of services are offered to assist them in living as independently as possible?
- Are people in the unit similar in age to the person considering admission?
- Will they have the opportunity to meet ventilator users who have returned to the community and maximized their independence?
- What types and how many hours of psychosocial services are available? These should include peer support, individual and group psychotherapy, couples, vocational and substance abuse counseling.
- Does the facility offer sexuality and fertility counseling?
Facility Policies/Family Members
- Do facility policies encourage family members including siblings regardless of age, to participate in rehabilitation programs?
- Are there living arrangements for family members participating in training? What other services, parking, meals and etc. are provided?
- Are counseling and other social services available to family members?
- Are SCI program participants given educational self-care manuals when they are discharged?
- Will staff members develop a formal discharge plan with program participants and their families?
- Does the facility and discharge planner work with local Independent Living Centers? Do they incorporate referrals to these centers into their discharge planning?
- Is there an independent living unit available for program participants and families to practice self-care skills? Can family members stay there also?
- If the facility does not have an independent living unit do they encourage overnight therapeutic leave prior to discharge?
- Will someone be assigned as a liaison to provide follow-up services?
- Will a staff member visit or make arrangements for someone locally to evaluate the home for modifications?
- Will the follow-up plan include:
- Referral to an appropriate physician and other medical specialists in the community?
- Regular follow-up visits with this physician or a spinal cord injury unit physician?
- Regular urological evaluations?
- Scheduled equipment evaluations?
- If appropriate, a thorough vocational evaluation and referrals to a vocational rehabilitation program?
- Referrals to other services and resources in the community, e.g. elder services?
Before Making the Final Decision
- Were staff members helpful and friendly when information was requested?
- Were you offered an opportunity to tour the facility? If you were able to make a tour, what were your impressions of the overall atmosphere?
- Did you have an opportunity to speak with people currently participating in the program? If so, were they satisfied with their rehabilitation programs?
United Spinal Association is committed to assisting individuals with SCI and other concerned individuals find quality rehabilitation services. If you would like further assistance during the decision making process, please contact us to discuss your concerns.
This Factsheet is offered as an information service only. It is not intended to include every facility nor is it an endorsement of the medical facilities listed. Any information you may have to offer to further update this Factsheet would be greatly appreciated. The United Spinal Association Resource Center provides information and referral on any subject related to spinal cord injury. Contact the resource center at 1-800-962-9629.
2.2. Patient-Family SCI Manual
Spinal Cord Injury Patient - Family Teaching Manual
A comprehensive educational manual produced by the Regional SCI Center of Delaware Valley. Topics include Bladder, bowel, Respiratory, Respiratory Dependent, Skin, Cardiovascular, Nutrition, Activities of Daily Living, Equipment, Mobility, Psychology, Vocational Services, Recreational Therapy, Recreation Resource Guide, Travel and Transportation, Sexuality and Spinal Cord Injury Follow-Up Care. Please note their disclaimer, as their guide is provided for informational and educational purposes only and is not intended as medical advice
2.3. Rehabilitation-including how and where to select a rehabilitation facility
Select the Spinal Cord Injury Model Systems Centers and CARF accredited rehab facility lists and the facility selection guidelines to assess if your loved one is entering a quality rehabilitation facility for his/her treatment.
See Facility Selection Guidelines attachment
2.4. United Spinal Association Chapters
Please visit the previous link to find the chapter affiliate nearest you. United Spinal Association Chapters are self-dependent organizations that share the goals of United Spinal Association and support them within a specified geographical region. They support the spinal cord injury/disease community in many different ways – by promoting health and well being, promoting inclusion and independence, organizing local events and projects, advocating for rights and accessibility, and offering information and support to their chapter communities.
Our chapters may have different missions and programs, yet all share the same dedication to enhancing the lives of people with spinal cord injury/disease, their families, and those who provide their care.
3. Once SCI/D rehabilitation begins
3.1. Centers for Independent Living
Centers for Independent Living are local offices where you can locate information and referral for persons living with disabilities. They provide information and services to maximize the independence of individuals with disabilities and the accessibility of the communities in which they live. Examples of services include ramping programs, listings of accessible housing and in some cases home modification assistance or case management. They're also an excellent resource for learning about personal assistance services (PAS) in your location.
3.2. CareCure Forum
CareCure Forums is a professionally managed site for persons living with SCI and their families moderated by SCI health professionals experienced with SCI/D.
3.3. HelpHopeLive - Catastrophic Injury Fundraising Program
HelpHopeLive can help patients to mobilize their communities to fundraise for uninsured expenses related to spinal cord injury, including home and vehicle modifications and home health care.
The Emergency Grant Program aims to help patients who have exhausted all other resources by providing them with a one-time grant. Social workers or financial coordinators should contact HelpHopeLive and speak with a patient services coordinator to determine the patient's eligibility at 1-800-642-8399.
3.4. Financial assistance
See Financial assistance Knowledge Book pages (grants, scholarships, loans and other sources)
3.5. Home modifications after SCI/D
See Home modification Knowledge Book for ramping, bath and other interior modification resources.
3.6. CaringBridge - family support website
CaringBridge - patient/family personal support websites. Careing Bridge can be a valuable time-saving resource to keep the entire family, friend and acquaintance network apprised of a patients progress through rehabilitation. This eliminates the need for the immediate family to answer repetitive questions.
4. Going home after SCI/D Rehab
4.1. Adjusting to SCI/D
Adjusting to a Disability is a Journey, written by Phil Pangrazio, CEO and president of Arizona Bridge to Independent Living. Mr. Pangrazio has lived with spinal cord injury for over 30 years.
FacingDisability.com- A compilation of over 1,500 short video clips in a searchable database by family relationship and time frame after injury. Additional input by SCI/D professionals in the rehab setting based upon their personal experiences.
Conversations about... living with spinal cord injury- SCI Forum
Presented on May 13, 2008 at the University of Washington Medical Center. Three men and one woman, all with longstanding spinal cord injuries, talk about their personal experiences living, surviving and thriving with their injuries. They share their initial reactions, adjustment, steps toward independence and thoughts about their injuries now.
Spinal Cord Injury: From the Moment of Injury to Leading a Full and Healthy Life - March 2010 New England Regional Spinal Cord Injury Center Lecture, Boston Medical Center, Boston, MA.
Motivational Stories of Success After SCI/D - Adjusting to SCI, takes a different period of time and often a different path for each person. However, it's often helpful to connect with others who have "been there", to begin to see the possibilities following SCI/D. Please take some time to review some stories of people who have found their own successful path forward: Motivational Stories of Success After SCI/D.
4.2. Legal issues
Legal services information including locating an attorney and ADA information.
4.3. Physiatrist locator
Physiatrists, or rehabilitation physicians are medical doctors who are experianced at diagnosing and treating pain or other conditions secondary to SCI/D. The American Board of Physical Medicine and Rehabilitation provides a Certified Physician Search tool on their website to locate physicians currently certified by state.
4.4. United Spinal Association
Contact the United Spinal Association Resource Center for guidance on any number of topics from 'Where to locate appropriate SCI/D rehabilitation' to vetted information on conditions secondary to spinal cord injury or disorder, state & local chapters and support groups and much more....
4.5. Websites with valid information
There are many websites with valid information useful to persons who are newly injured and their families. For additional information, visit:
United Spinal Association is dedicated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D), including veterans, and providing support and information to loved ones, care providers and professionals. To learn more about our Resource Center, chapters, support groups and more, please visit: www.spinalcord.org. United Spinal is also committed to advancing public policies that lead to greater civil rights and independence for people with disabilities. To learn more about our advocacy efforts, please visit: www.unitedspinal.org.
New Mobility Magazine, the membership publication of United Spinal Association, provides a wealth of articles, active message boards, a calendar of events, links and classifieds for wheelchair users.
The Miami Project to Cure Paralysis is the world's most comprehensive spinal cord injury research center. The Miami Project's international team of more than 200 scientists, researchers and clinicians take innovative approaches to the challenge of spinal cord injury.
Model Systems Knowledge Translation Center (MSKTC)- The MSKTC summarizes research, identifies health information needs, and develops information resources to support the Spinal Cord Injury Model Systems Center programs in meeting the needs of individuals with spinal cord injury (SCI) including numerous factsheets on important health and wellness topics.
Spinal Cord Injury Model System Information Network, maintained by the University of Alabama at Birmingham Spinal Cord Injury Model System (UAB-SCIMS). This resource promotes knowledge in the areas of research, health and quality of life for people with spinal cord injuries, their families, and SCI-related professionals.
Craig Hospital in Denver, CO is a designated Spinal Cord Injury Model System Center. Their website provides many educational resources for people with SCI/D. Additionally, Craig Hospital offers a Nurse Advice Line for non-emergent questions.
The Paralyzed Veterans of America - Paralyzed Veterans of America published the Consortium for Spinal Cord Medicine evidence-based clinical practice guidelines (CPGs) for clinicians and companion consumer guides offered to help people living with SCI put expert information to use in their daily lives.
University of Miami POINTIS- Louis Calder Memorial Library of the University of Miami/Jackson Memorial Medical Center website, that provides comprehensive information on spinal cord injury rehabilitation for health care providers, patients and patient's families.
Disability.gov- The U.S. federal government website for information on disability programs and services nationwide.
Listing of clinical trials related to SCI on ClinicalTrials.gov, a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world