Candidates for the St. Louis Children’s Hospital Neurorehabilitation Program must meet specific criteria. These include:
- They must require the services of at least two of the three core rehabilitation services – physical therapy, occupational therapy and speech therapy.
- They should be able to tolerate at least three hours of therapy per day; most of the children will ultimately spend five to six hours per day involved with the therapy team. Neurorehabilitation is intense physical and mental work!
- They must be medically stable, and acute medical needs should be met prior to admission to the neurorehabilitation unit.
- They must have a reasonable expectation for improvement of motor, speech and/or cognitive skills, and they must have the potential to achieve those goals within a reasonable length of time.
Once your child is accepted into the Neurorehabilitation Program, the team will work with you to develop long-term and short-term goals for your child. As vital members of the team, parents and families help determine the most important goals for your child. Our goal is to improve each child’s skills and abilities and to increase functional independence as much as possible. During your child’s stay, each day will consist of many individualized activities designed to meet your child's special needs.
Your child’s stay
Your child will stay on the 12th floor of the hospital. The therapy gym is located on the same floor as the patient rooms. During your child’s stay, he or she will likely visit many other areas of the hospital as well, including the school room, play room, teen lounge, one of our two rooftop healing gardens, the fourth floor therapy gym, or the Center for Families.
As soon as your child is admitted to the Neurorehabilitation Program, discharge planning begins. Your child’s discharge date will be based on progress toward goals, feedback from the team, and your readiness to care for your child at home. Over 95 percent of children discharged from our Neurorehabilitation Program are able to go directly home. Although length of stay ranges from 1 week to 12 or more weeks, the average stay in the program is approximately 3 – 4 weeks.
Your child’s therapy day consists of morning and afternoon sessions. Your child will have 3 or more hours of therapy per day Monday through Saturday unless a modified schedule is recommended and cleared with the doctor. The therapy schedule is usually the same Monday through Friday. A separate weekend schedule will be posted on Friday afternoon. On Sunday, the therapy schedule is reduced in order to give time for visitors or more informal activities.
Parents and family members typically do not accompany the child to therapy sessions unless special circumstances require you to be present. This helps to decrease distractions, foster independence, and maximize space in the treatment area. The therapists will be available each day to answer any questions and to update your child’s daily progress.
The Neurorehabilitation team meets regularly to discuss progress and plans for each child. In addition to the informal updates you receive about how your child is progressing, you will be asked to participate in a more structured team conference at least every other week (weekly if indicated). The team conference is an opportunity for you to ask questions, share thoughts and concerns, and hear feedback from all team members together. We will review progress and goals, and will talk about ongoing plans for discharge. If you are unable to attend the meeting in person, we can arrange a conference call so you are still able to participate with the team.
Preparing to go home
The ultimate goal of the Neurorehabilitation Program is to prepare you and your child to go home and to successfully resume activities in your community. That process of community reintegration often begins with outings from the hospital, called “therapeutic community outings” (TCOs). The team will work with you and your child to plan the outing. The outing is designed to support your child’s treatment plan and goals by seeing how well they can use the skills they are learning in therapy in a community setting. The goal is to combine therapeutic goals (like improving independent movement, improving communication, or following instructions) with a meaningful and fun trip outside of the hospital. Your child might select a movie, trip to the zoo, visit to the Science Center or the Butterfly House, or to a restaurant – the possibilities are endless! The TCO is considered a treatment session, so family members do not usually attend.
After your child has been on a successful therapeutic community outing with the staff, you are encouraged to take your child out of the hospital for a “functional trial visit” (FTV). The FTV is an opportunity for you and your child to practice new skills, identify progress and determine areas still requiring refinement for successful transition to home. The FTV is an excellent time to address details such as car seat safety and transfers or how to use and transport new adaptive equipment. Sundays are nice times to schedule a functional trial visit since the therapy day typically ends before noon. Insurance approval is required and the medical provider needs to write orders before going on an FTV.
Return to school
If your child is of school age, school sessions may be included in the daily schedule. The neurorehabilitation team includes teachers who are certified in the state of Missouri and have master’s degrees in curriculum and instruction as well as certification in special education. They work in collaboration with the care team and with your child’s school to develop an appropriate learning plan.
The child life specialist uses input from your child's neurorehabilitation team to create a presentation to ease the transition back to class. We strive to help community teachers and classmates understand what your child has experienced while away from school, any changes that have occurred, and new supports they may need in school.
The child life specialist works with your child to develop an individualized, age-appropriate presentation for classmates and teachers. It includes information about:
- Your child’s medical condition
- Therapies your child received in the hospital
- Any changes that may need to be made when your child returns to school
- Anything else your child wants to share about the hospitalization
If your child’s school is within a 60-mile radius of the hospital, members of the Neurorehabilitation team can coordinate with you to travel to the school to give the presentation and answer questions from classmates, teachers and school staff.
The program also offers home visits for families who live within a 60-mile radius of the hospital. As the time for discharge approaches, the occupational and physical therapist may visit the family home to assess accessibility and challenges to daily living. Home visits are most effective if your child is present for the visit. They can be invaluable in trouble shooting obstacles and easing anxieties.
In addition to home and school visits, there are many supports to help you and your child prepare for discharge. These include:
- Equipment assessments and recommendations
- Community resource information
- Follow up appointments