Who is treated in the Spinal Cord Injury Program?

During fiscal year 2019*, 164 children and adolescents with spinal cord injuries were treated by the Spinal Cord Injury Program. The ages ranged from birth to 21 years of age with 51 percent female and 49 percent male. Below is an age breakdown of those patients.

Below is the age breakdown of those patients:

Diagnoses Treated

The Spinal Cord Injury Program treats children and adolescents who, collectively, have a variety of diagnoses.

Below is a breakdown of the most common diagnoses treated by the Spinal Cord Injury Program:

Types of Patients Treated

These patients have functional challenges related to their spinal cord injury. These challenges may include performing daily self-care activities, limitations in mobility, bowel and bladder dysfunction or difficulty breathing. Patients must able to participate in one to five hours of therapy per day.

Interdisciplinary Treatment Team

Patients with spinal cord injury may have complex needs. An experienced interdisciplinary treatment team works with every patient and his or her family.

This team may include:

  • Adaptive aquatic specialists
  • Assistive technology professionals
  • Child life therapists
  • Nurse care managers
  • Nurse practitioners
  • Nurses
  • Occupational therapists
  • Orthotists
  • Personal trainers
  • Physiatrists
  • Physical therapists
  • Psychologists
  • Registered nurses
  • Seating and mobility specialists
  • Social workers

When appropriate, the providers will refer patients to additional medical services at Johns Hopkins Hospital or other hospitals with expertise in the care of individuals with spinal cord injuries.

Where do patients live who are seen by the Spinal Cord Injury Program?

Patients come from all 50 states and more than 40 countries.

How much therapy do patients being treated in the Spinal Cord Injury Program receive?

In the medically supervised outpatient therapy program, therapists work one-on-one with patients, focusing on achievement of goals set by the patient, physician and therapist.

The Spinal Cord Injury Program offers two unique therapy options:

  • Short-term intensive therapy:
    In this five-day-a-week program, patients attend therapy for two to three weeks and receive a minimum of three hours of therapy each day.
  • Extended intensive therapy:
    In this program, patients attend therapy one to three times per week for eight to 12 weeks, and receive a minimum of three hours of therapy per session. In addition, specialized Aquatic Therapy is available with either therapy option. This specialized therapy features innovative pools with multiple jets, built-in treadmills, video systems, and floors that operate on lifts to allow barrier-free entry and exit for patients in wheelchairs.

What happens if a patient gets acutely sick or has a medical emergency while an inpatient at Kennedy Krieger?

Kennedy Krieger has Basic Life Support-certified physician and/or a nurse on-site at all times when the clinic or therapy gym is open, with the equipment and processes in place to respond to medical emergencies. If a patient becomes seriously ill, or has a medical emergency, care can be obtained at The John Hopkins Hospital Pediatric Emergency Department. If needed, an ambulance will be called for emergency transportation.

Ninety-five percent of children and adolescents completed their outpatient therapy program without interruption.

How are patients and their families involved in the care they receive from the Specialized Transition Program ?

No one knows a patient better than his or her family. Kennedy Krieger providers are committed to incorporating family-centered care. The best way to care for a patient is to include his or her family in the patient’s healthcare team. Family members are encouraged to participate in treatment planning, goal setting, family meetings, and education and training sessions.

What kinds of improvements might patients receiving treatment from the Spinal Cord Injury Program be expected to make?

In fiscal year 2019*:

  • 100 percent of patient remained living in the community.
  • 100 percent of young children (5 to 13 years) were participating in school programs.
  • 93 percent of patients between 14-21 are participating in high school, college, vocational school, employed or volunteering.
  • 91 percent of parents of patients completing their outpatient therapy program received and reported the ability to direct or carry out the home rehabilitation program

What do patients and their families say about their outpatient rehabilitation experience at the Spinal Cord Injury Program?

From pediatric patient surveys:

  • 100 percent of children and adolescents "met" or “partially met" their therapy goals
  • 92 percent reported that they "knew" or partially knew" their therapy goals
  • 100 percent reported that the therapist treating them was "helpful" or "partially helpful" From parent/caregiver surveys: • 100 percent of persons surveyed would recommend ICSCI to another patient with paralysis
  • 100 percent would rate their experience at Kennedy Krieger Institute as good or excellent • 100 percent would rate the care provided by their physician as good or excellent

Does Kennedy Krieger have special accreditation?

Kennedy Krieger Institute is accredited by the Commission on the Accreditation of Rehabilitation Facilities (CARF) and The Joint Commission. Every three years, both organizations review the Institute to ensure all its programs meet or exceed the very high standards it sets for the care of its patients.

*Fiscal year 2019 is the time frame from July 1, 2018 – June 30, 2019.