| Assessment |
- Multidisciplinary rehabilitation assessment every six months or more frequently if concerns, change in status, or specific needs are present
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| Intervention |
| Direct treatment |
- Direct treatment implemented by physical therapists, occupational therapists, and speech-language pathologists, tailored to individual needs, stage of disease, response to therapy, and tolerance, provided across the patient's lifespan
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| Prevention of contracture and deformity |
- Daily preventive home stretching four to six times per week; regular stretching at ankles, knees, and hips; stretching of wrists, hands, and neck later if indicated by assessment
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- Stretching for structures known to be at risk of contracture and deformity* and those identified by assessment
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- Orthotic intervention, splinting, casting, positioning, and equipment:
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- AFOs for stretching at night – might be best tolerated if started preventatively at a young age
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- AFOs for stretching or positioning during the day in non-ambulatory phases
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- Wrist or hand splints for stretching of long and wrist finger flexors/extensors – typically in non-ambulatory phases
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- Serial casting – in ambulatory or non-ambulatory phases
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- Passive/motorized supported standing devices – when standing in good alignment becomes difficult, if contractures are not too severe to prevent positioning or tolerance
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- KAFOs with locked knee joints – an option for late ambulatory and non-ambulatory stages
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- Custom seating in manual and motorized wheelchairs (solid seat, solid back, hip guides, lateral trunk supports, adductors, and head rest)
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- Power positioning components on motorized wheelchairs (tilt, recline, elevating leg rests, standing support, and adjustable seat height)
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| Exercise and activity |
- Regular submaximal, aerobic activity or exercise (eg, swimming and cycling) with assistance as needed, avoidance of eccentric and high-resistance exercise, monitoring to avoid overexertion, respect for the need for rests and energy conservation, and caution regarding potentially reduced cardiorespiratory exercise capacity as well as risk of muscle damage even when functioning well clinically
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| Falls and fracture prevention and management |
- Minimization of fall risks in all environments
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- Physical therapist support of orthopedics in rapid team management of long-bone fractures and provision of associated rehabilitation to maintain ambulation and/or supported standing capabilities
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| Management of learning, attentional, and sensory processing differences |
- Management in collaboration with team, based on concern and assessment
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| Assistive technology and adaptive equipment |
- Planning and education with assessment, prescription, training, and advocacy for funding
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| Participation |
- Participation in all areas of life supported at all stages
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| Pain prevention and management |
- Pain prevention and comprehensive management, as needed, throughout life
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