About the SMA Intensive Therapy Program
The SMA Intensive Therapy Program is a rehabilitation program aimed at helping children and youth with Spinal Muscular Atrophy (SMA) maximize their motor potential and participation in day to day activities when treated with genetic based treatments (e.g. antisense drugs and/or gene therapy) for SMA.
The program consists of a 6 week inpatient* or day patient** stay with therapy 5 days a week. During this time, the team will work together with you and your child to develop a plan based on your child’s goals. Children will have access to daily PT, OT, therapeutic recreation and/or school, and consultation from other therapists including SLP, dietitian, and child life specialist.
The following information is to assist practitioners/clinicians/healthcare providers to navigate the referral process for the SMA Intensive Therapy Program at Holland Bloorview Kids Rehabilitation Hospital.
Referrals must be made by a therapist (physiotherapist, occupational therapist) AND physician. Referrals are reviewed and prioritized for children with SMA who meet the following criteria***:
- Received or receiving genetic based treatment.
- Demonstrating progress towards functional motor goals in outpatient therapy sessions where an intensive burst of therapy would maximize changes towards goals.
- Have all of the necessary equipment in place at the time of admission. This may include orthotics (AFOs, KAFOs, splints), spinal bracing, mobility device or other equipment required to work towards goals
- Can actively engage in therapy sessions
- Parent/caregiver will join the initial (first week of admission) and transition (6th week of admission) family team meetings, and at least one therapy session weekly to carry over therapy program during the weekends and to learn the home program.
- For younger children, to maximize participation in therapy one nap per day (instead of multiple) is preferred.
- Community therapists/physicians will be invited to participate in the referral intake meeting and transition/discharge family team meeting
*Inpatient stay involves an admission to Holland Bloorview. The child sleeps in the hospital; feeds/meals and medications are provided by the hospital during the admission. One parent/caregiver is allowed to remain at bedside overnight. Attendance for parents/caregivers can be flexible and may be discussed with the team. You child is able to attend weekend passes home throughout the inpatient stay (maximum of 2 nights at a time).
**Daypatient stay involves coming to the hospital 5 days a week for therapy sessions and for school/playroom programing. Parents are responsible for arranging transportation to/from the hospital daily and provide their child’s meals and medications. If your child is school aged, school bussing may be arranged if you live in Toronto or York Region. Depending on the level of care required a parent/caregiver may be required to remain with their child during the day while they are at the hospital. The day starts at 9 am and ends at 4 pm.
***Exceptions to this list will be addressed on a case-by-case basis.
Step 1: Complete inpatient referral form.
- Check box for Complex Continuing Care
- Indicate Inpatient or Daypatient stay
- Write at top of sheet that this is for the Intensive SMA Program
Step 2: Complete SMA specific referral form for parent/caregiver and therapist.
This form will include:
- Additional SMA specific information from parent/caregiver
- Goals for intensive rehab program
Step 3: Include last progress note from local Neuromuscular clinic.
Step 4: Any additional medical or therapy notes that would be helpful to coordinate care.