What can I expect after spinal cord injury?

Choosing a Rehabilitation Facility

Your rehabilitation treatment is as critical to your recovery as your acute care. As you or a loved one embark on rehabilitation, it is essential that you have confidence in your rehabilitation program and its ability to provide the care you. For most people the task of evaluating a spinal cord injury rehab facility is not something they have ever thought about.

The nature of your insurance coverage and the facility’s location, how close or distant it is to where you live are certainly important considerations. To help you evaluate the quality of a rehab program, there are questions you can raise. NSCIA, the National Spinal Cord Injury Association, offers a very thorough checklist of questions to consider when you’re looking at rehabilitation facilities. Their website http://www.spinalcord.org/ offers a wealth of sound advice about rehabilitation. Below are some general considerations.

General Considerations

After a life-changing injury like SCI, when a person is facing a new set of assumptions about their life, one of the most helpful experiences ins being with other people who are also dealing with SCI. You should look for a facility with a large, active SCI rehab program, where you’re likely to meet other people of your age and gender, and people facing similar rehab goals. This is particularly important for women, because far fewer women incur SCI than do men and it is harder for women with SCI to find a program with other women to whom they can turn for support. It’s also helpful if all the people with SCI are housed in the same area, so there is opportunity for connection.

You’ll want to know whether the facility’s SCI program is accredited by the Commission on the Accreditation of Rehabilitation Facilities (CARF) or the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). A few centers around the country are designated as a Model Spinal Cord Injury Center by the National Institute of Disability Research and Rehabilitation (NIDRR); these are likely to be well-staffed, and treat a variety of patients and kinds of injury.

You’ll want look at staffing: is the supervising doctor a physiatrists, a doctor who is trained and certified in rehabilitation medicine? Is there round the clock physician and nursing coverage? Does the nursing staff have training and expertise in SCI, and patients’ particular needs? What are the staff to patient ratios?

Medical specialists in urology, orthopedics, plastic surgery neurosurgery, neurology, , neuropsychology, internal medicine, gynecology, speech pathology, pulmonary medicine, general surgery and psychiatry should either be on staff, or available nearby for consultation as needed.

A critical point is the quality of communication between staff and the patient’s family. Family members need to be involved in the rehab plan, and they may need help in navigating private and public insurance and other sources of payment and assistance.

How many hours per day are people with SCI involved in rehab activities? When they’re not in rehab, especially on weekends what kinds of activities and programming are available? This is a particularly important question for young children and teenagers.

A good SCI rehab program teaches patients and families about practical matters like bowel and bladder management, skin care, hiring and working with a personal care assistant if necessary, modifications for the home and for cars, and driver education.

You’ll want to find out about counseling services, including peer support groups, individual and group psychotherapy, couples counseling, especially about sexuality and fertility, vocational and substance abuse counseling. You’ll also want to know whether counseling is available to spouses and other family members, who are also grieving and having to adjust.

Because very few children sustain spinal cord injuries, a child or teenager with SCI is likely to end up on a rehabilitation with children with chronic disabilities. If your child has an SCI, you’ll want to look for a facility that can place him or her with other children of or near the same age who are actively also engaged in rehab. You’ll also want the physiatrist and the staff to be experienced with children and teens.

A good pediatric rehab program will actively engage parents, and provide therapeutic recreation, family activities, and a school program, so that children can keep up with school. You’ll want to ask about family-friendly policies, including visitation for younger siblings and parents’ being able to stay over or nearby.

Discharge planning is a major concern. You’ll want to ask whether a formal discharge plan will be worked out, and what kind of follow-up is planned for continued care: physician referrals, especially re-evaluation of the injury, urological evaluations, and other specialty care as needed. If assistive equipment is needed (ventilator, wheelchair, etc), will the facility help with resources for these? Is there a plan for home modifications? Vocational evaluation and vocational counseling?

In choosing a facility, you’ll want to think about your own impressions: were staff members courteous, helpful, friendly? Were you able to talk with other patients and family members about their satisfaction with the program? Is this a place you or your loved one will be comfortable?