From Survival to Participation: Early Powered Mobility in the New Era of Spinal Muscular Atrophy Type I

Background: Disease-modifying therapies have profoundly changed the natural history of spinal muscular atrophy (SMA) type I, shifting rehabilitation priorities beyond survival and motor function toward participation, autonomy, and quality of life. However, rehabilitation models have not evolved at the same pace, and the role of early powered mobility in this new clinical scenario remains insufficiently conceptualized. Methods: This narrative review integrates current evidence on early powered mobility in children with severe motor disabilities with contemporary rehabilitation frameworks, including the International Classification of Functioning, Disability and Health (ICF), participation-based therapy, family-centered care, and the concept of on-time mobility. Evidence from the AMEsobreRuedas research program is incorporated to develop a conceptual framework for early powered mobility in children with SMA type I receiving disease-modifying therapies. Results: Current evidence suggests that early powered mobility should be understood as a developmental rehabilitation intervention rather than solely as an assistive technology for transportation. Independent mobility facilitates exploration, play, social interaction, autonomy, and participation, while positively influencing family experiences and expectations. Findings from the AMEsobreRuedas program further indicate that the benefits of powered mobility extend beyond driving skill acquisition, supporting participation, quality of life, and family well-being when implemented within meaningful daily contexts. Based on this evidence, a conceptual framework is proposed in which independent mobility acts as an early facilitator of developmental opportunities, with participation emerging through the interaction between the child, family, and environment. Conclusions: In the era of disease-modifying therapies, rehabilitation in SMA should move from a motor-centered approach toward a participation-oriented model. Early powered mobility represents a key intervention for promoting developmental opportunities and meaningful participation rather than simply compensating for motor impairment. The proposed conceptual framework may support clinical decision making and provide a foundation for future rehabilitation research in pediatric neuromuscular disorders.