Choosing a Spinal Cord Rehabilitation Program

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) and 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 feature that can be evaluated, regardless of our 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 heath throughout his or her lifetime.

Rehabilitation Programs
In order to develop and maintain quality services for individuals with spinal cord injuries, rehabilitation staff and programs must specialize in treating spinal cord injuries. 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.

Inpatient SCI rehabilitation programs often have featured which distinguish them from other hospital programs. Rehabilitations programs are designed to serve people with a wide variety of skills and must address complex social and community issues. A rehabilitation team, compromised of specialized medical personnel, is used to accomplish these goals.

Teams should include social workers, occupational and physical therapist, recreational therapists, rehabilitation nurses, rehabilitation psychologists, vocational counselors, nutritionists, and other specialists. The teams are usually directed by a physiatrist, a doctor specializing in physical medicine and rehabilitation.

The team should assign a program manager who will function as a contact with the rest of the team. This program manager 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 making 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.

Spinal Cord Injury Rehabilitation Program Checklist
 

General Considerations
Peer support and contact with others who have spinal cord injury 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 incident of SCI among women is much lower than it is for men.  Here are some questions to ask when consdiering a rehabiliation hospital.

  1.  Are there beds for people with SCI in the same area of the facility?
  2. Are the people in the SCI program of similar age and gender as the person considering admission?
  3. Do the people in the SCI program have similar levels and kinds of spinal cord injuries (e.g. tetraplegia, paraplegia, incomplete and complete)?
  4. What is the average number of people admitted annually to the SCI program? Program staff should tread people with SCI on a regular basis to acquire and maintain expertise.
  5. Is the SCI program accredited by the Commission on the Accreditation of Healthcare Organizations (CARF) or the Joint Commission on Accreditation of Healthcare Organizations (JCAHO)? Has the program been designated as a Model Spinal Cord Injury Center by the National Institute of Disability Research and Rehabilitation (NIDRR)? Is the SI program part of a spinal cord injury rehabilitation system operated by the state?
  6. Are there treatment specialists in the SCI program who speak the primary language of the individual seeking treatment?
  7. Will the treatment team develop a rehabilitation plan with both short and long term goals?
  8. Will an experienced case manager be assigned to help family members obtain medical payments and other benefits from public and private insurance?
  9. Will a team member be assigned to coordinate treatment and act as a contact for staff and family members?

Staffing/Rehabilitation Program Elements

  1. Is the physician in charge a Physiatrist? If not, what credential does he/she have? How long has the physician in charge been directing programs specializing in SCI?
  2. Is there physician coverage seven days a week, twenty four hours a day?
  3. 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 through an outside agency?
  4. Does the program ensure the availability of rehabilitation nursing and respiratory care on a twenty four hour basis?
  5. Are consultants available at the facility or nearby medical center? Theses should include neurosurgery, neurology, urology, orthopedics, plastic surgery, neuropsychology, internal medicine, gynecology, speech pathology, pulmonary medicine, general surgery, and psychiatry.
  6. How often, and for how long each day, will participants get treatment by specialists such as occupation and physical therapists? Treatment should be no less than three hours per day.
  7. Are other specialists, such as driver education, rehabilitation engineering, chaplaincy, and therapeutic recreation available if needed?
  8. Are activities planned for SCI program participants on the weekends and evenings?
  9. How much time is spent teaching SCI program participants and their families about sexuality, bowl and bladder care, skin care and other essential self care activities?
  10. Does the SCI program offer training in the management and hiring of personal care assistants? If so, how much time is spent by the staff on this topic?

Special Programs
Pediatric Programs

Because of incidence rated of SCI among children are relatively low, rehabilitation programs usually do not maintain a separate program or unit exclusively for children with SCI. As an alternative, caregivers may consider facilities or 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 places 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.

  1. Are there beds for children with spinal cord injuries in one area or in the same location as children with similar disabilities?
  2. Are the children of the same sex and similar age currently in the program or facility?
  3. Is the physician in charge an individual with experience in rehabilitation? Does this physician have experience with other children? If not, what are his/her qualifications? Do the other staff members specialize in pediatrics?
  4. How many children with SCI does the program or facility admit on an annual basis?
  5. Does the program or 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?
  6. Are there child life or therapeutic recreation specialists on staff? Child life specialists develop programs for children and families that 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.
  7. Are young siblings and friends allowed to visit the unit?
  8. Does the program or facility offer adaptive technology to help children communicate and learn?
  9. Is counseling available for siblings and family members?
  10. Is the equipment used by therapists (physical and occupational), appropriate for children?
  11.  Does the facility or program provide patient education materials for children and family members?

Ventilator Programs (See the fact sheet, Ventilator Programs, for more information.)

  1. Is the physician who directs the program a board certified Pulmonologist or a Physiatrist? Does he/she have experience with SCI?
  2. Are ventilator users treated on the same unit?
  3. How long has the facility been providing treatment for ventilator users?
  4. I 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?
  5.  Will they have the opportunity to meet ventilator user have returned to the community and maximized their independence?

Special Considerations

Psycho-social Counseling Services

  1. What types an how many hours, of psycho-social services are available? These should include peer support, individual and group psychotherapy, couples, vocation, and substance abuse counseling.
  2. Does the facility offer sexuality and fertility counseling?

 

Facility Policies regarding Family Members

  1. Do facility policies encourage family members, including siblings regardless of age, to participate in rehabilitation programs?
  2. Are living arrangements for family members participating in training available?
  3. What other services (parking, meals, etc.) are provided?Are counseling and other social services available to family members?

Discharge Planning

  1. Are SCI program participants given self-care manuals when they are discharged?
  2. Will staff members develop a formal discharge plan with program participants and their families?
  3. Do the facility, and the discharge planner, work with local independent living centers? Do the incorporate referrals to these centers into their discharge planning?
  4. Is an independent living unit available for program participants and families to practice self-care skills? Can family members also stay there?
  5. If the facility does not have an independent living unit, so they encourage overnight therapeutic leave prior to discharge?
  6. Will someone be assigned as a liaison to provide follow up services?
  7. Will a staff member visit or make arrangements for someone locally to evaluate the home for modifications?
  8. Will the follow up plan include the following:
    a. Referral to an appropriate physician and other medical specialists in the community?
    b. Regular follow-up visits with this physician or a spinal cord injury unit physician?
    c. Regular urological evaluations?
    d. Scheduled equipment evaluations?
    e. If appropriate, a thorough vocational evaluation and referrals to a vocational rehabilitation program?
    f. Referrals to other services and resources in the community (e.g. elder services)?

Before making the final decision…

  1. Were staff members helpful and friendly when information was requested?
  2. Were you offered an opportunity to tour the facility? If you were able to take a tour, what were your impressions of the overall atmosphere?
  3. Did you have an opportunity to speak with people currently participating in the program? I so, were they satisfied with their rehabilitation programs?

Spinal Cord Injury Rehabilitation Programs Accredited by the Commission
on Accreditation of Rehabilitation Facilities (CARF)
The following list of SCI programs accredited by the Commission on Accreditation of Rehabilitation Facilities (CARF). CARF is a non profit organization established to adopt and apply standards within facilities throughout the nation. CARF has currently accredited 88 Spinal Cord Injury Programs. Accreditation by CARF is voluntary. (Listing starts on page 6)

National Institute of Disability and Rehabilitation Research
The National Institute of Disability and Rehabilitation Research (NIDRR) designated eighteen spinal cord injury rehabilitation programs listed as Model Systems. To qualify for designation as a Model System, and to receive funding from NIDRR, rehabilitation programs must utilize and evaluate a prototype of SCI treatment based on providing continuity of care through he development of five areas within a system.

Model Spinal Cord Injury Systems must have:
-Emergency medical services;
-Expertise in treating trauma;
-A comprehensive rehabilitation program;
-Vocational and psychological counseling services; and
-Community reintegration services.
Model systems must also conduct research of interest to NIDRR and collect data on SCI. In order to gain and maintain expertise in rating SCI, designated systems are expected to provide care to a significant volume of people with SCI, although consumers should be advised that designated systems are not evaluated for their quality of care.

As with any treatment decision, it is recommended that persons who have SCI should thoroughly investigate any medical or rehabilitation treatment facility before deciding to be admitted. A list of Illinois facilities follows.
 

Advocate Christ Hospital
Medical Center

4440 W 95th Street
Oak Lawn, IL 60453
708-425-8000

Carle Hospital
611 West Park
Urbana, IL 60453
217-326-0816

Hines VA Hospital
Hines, IL 60414
708-343-7200

Marianjoy Rehabilitation Hospital
26 W 171 Roosevelt Road
PO Box 795
Wheaton, IL 60187
630-909-8000

Memorial Medical Center
Regional Rehabilitation Center

800 N Rutledge
Springfield, IL 62781
217-788-3302 

Northwestern Memorial Hospital
251 E Huron
Chicago, IL 60611
312-926-2000

Rehabilitation Institute of Chicago
345 E Superior
Chicago, IL 60611
312-908-6000

Rockford Memorial Hospital
Physical Therapy Department

2300 N Rockton Ave
Rockford, IL 61103
815-971-2000

Schwab Rehabilitation Hospital
1401 S California
Chicago, IL 60608
773-522-2010

Shriners Hospital for Children
2211 N Oak Park Ave
Chicago, IL 60635
773-622-5400