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Spina Bifida General Checklist: Working with Schools -- SHNIC Educators Information


  • Access to school.
  • Access to bathroom or area for bowel management.
  • Access to classroom.
  • Classroom materials within easy and independent reach.
  • Fire and emergency considerations-child can get out quickly, easily, and safely.

Adaptive Devices/Musculoskeletal:

  • Review together how to operate the equipment (braces, w/c parapodium, etc.).
  • Designated rest periods out of the wheelchair planned.
  • Discuss child's abilities getting out of equipment and if help is needed getting in/out of chair.
  • Are wheelchair transfers smooth and independent? How does the child manage if he falls? How does he get back up?
  • School has understanding of child's baseline of self care so that the progress can be encouraged and independence maintained.
  • Adaptive PE to improve gross motor capabilities and general conditioning. Should not be excluded from group sports and activities, rather encouraged to participate and play to the best of their abilities.
  • Physical therapy (PT) to address safe transfers, access issues, seating and positioning for tabletop activities
  • PT goals reviewed (to maximize student's functional abilities and independence.
  • Scoliosis (lateral curvature) and kyphosis.


  • Review insensate skin (skin that lacks normal sensation or feeling).
  • Identify measures to protect insensate skin; w/c pushups, time ouf of chair on mat, etc.
  • Teach safety: assist child to watch for warning signals, such as redness or blanching of skin, test temperature of metal, etc.
  • Signs of fracture in an insensate limb: swelling, warmth, redness of area, malalignment, abrasion, fever.
  • Early signs of inflammation or breakdown; red area, blisters, swelling, sores.

Bowel/Bladder Management:

  • What can child do for himself in bladder management?
  • What can child do for himself in bowel management?
  • What the normal patterns are for bowel and bladder?
  • Long and short term goals student/family may have (i.e., if the long term goal is self catheterization, set the short term goals that might include gathering supplies, removing and cleaning the catheter, or changing soiled garments). Essential to maintain consistency is an approach to adhere to toileting time.
  • Adequate hydration during school day and on field trips, in hot weather with exercise.
  • Catheterization: one person to assist child as necessary and an identified backup person.
  • Medical authorization for catheterization and medications on file in school.
  • List of all medications a child is on including name of medicine and doses that need to be given at school, why the medication is being given, precautions and any effects it may have on the child.
  • Signs of urinary tract infections: fever, stomach ache, back or flank pain, cloudy and/or foul smelling urine or blood in urine.
  • Skin care: keeping child dry, usual morning routine and any sores or breakdown that require treatment (cleaning, application of moisture barrier or topical ointment, etc.).

Neurological Concerns:

  • VP/VA shunt and purpose of shunt.
  • Signs of shunt malfunction or infection: headache, vomiting, lethargy, swelling along the shunt, seizures, stiff neck, personality change, deterioration in school performance and a decrease in sensory or motor functions.
  • Tethered cord: Sign/symptoms: changes in bladder or bowel continence, back pain, progressive Scoliosis, changes in gait or muscle strength, increased tone in lower extremities.
  • Noise sensitivity.
  • Visual Problems.
  • Handwriting can be affected by vision, fine motor coordination, Chiari Malformation.
  • A yearly visual screening in recommended, as well as careful consideration as to where the child sits in the classroom.
  • Seizures.
  • Chiari ll Malformation symptoms in school age children: Changes in hand function or strength, increased gagging or feeding problems, neck pain, nystagmus, behavior changes, upper extremity spasticity.
  • Ability and quality of handwriting: Does child need an alternative to pen/pencil writing (i.e., typewriter, calculator or computer).
  • Report any deterioration in cognitive ability or school performance.

Latex Allergy:

  • Signs of allergic reaction.
  • Emergency steps to take.

Educational impact and Related Learning Issues:

(Evaluated on an individual basis for learning abilities and aptitudes)

  • Although some students exhibit cognitive impairment, may will have average levels of intelligence.
  • Has strong conversational skills and displays normal speech/strong reading skills.
  • Potential problem areas can include perceptual motor performance, comprehension, attention, activity, memory, organization, sequencing, reasoning.

Miscellaneous Issues:

  • May lack "shared history" with classmates or have never been exposed to some information that may be common knowledge for a child that age. More exposure to a variety of health care settings.
  • Resources available.

This checklist is intended as a guideline only. Each child must be evaluated individually so that his or her specific needs and abilities can best be addressed. Not all children will have every item on the checklist; some may have more issues. Good resources parents may want to share with teachers and school nurses include:

  • Teaching the student with Spina Bifida, Fern Rowley-Kelly and Donal Reigel, Paul H. Brookes Publishing Co., Baltimore, 1993
  • Various resources through the Spina Bifida Association of America (SBAA) 1-800-621-3141. Including Spotlights: "Educational Issues Among Children with Spina Bifida" and "Learning Among Children with Spina Bifida," both by Don Lollar, Insights into Spina Bifida: Back to school issue, September/October 1994, Volume V. Parent/Teacher Packet, and more.

Reproduced with permission of the MUSC Spina Bifida Clinic, Charleston, SC

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