In general, young people transition to living independently once they reach adulthood to gain a sense of autonomy and independence. These two studies look at what this change means for young people with cerebral palsy and their families, what helps or gets in the way, and how rules and services in Australia match (or don’t match) real family life.

The first study surveyed 32 family members to find out what “independent living” means and what makes it hard or easier. Families saw moving out as a chance for the young person to experience adult life and for “freedom for all parties”, but they also felt strong worry about safety, quality of care, and what will happen as parents age. The key problems they faced were the hard-to-navigate systems, delays in funding and equipment, lack of suitable housing, and not trusting services to handle complex needs of the young person.

The second study did in-depth interviews with 13 parents to see how the families cope and adapt during the transition. It found that parents face a “pile-up” of stresses at once: leaving school, transitioning for child to adult health services, and planning housing, all while dealing with confusing NDIS rules and patchy services. Families show a lot of strength by planning ahead, problem‑solving, and slowly practising independence, but they often have to “fill the gaps” left by the system. Together, the studies show that independent living can be very positive, but only if policies and services better support both the young people and their families over time, instead of leaving families to manage by themselves.

Citation:

Hickey, L., Harms, L., Culnane, E., Saunders, V., Imms, C., Ball, M., & Reddihough, D. (2025). Families’ perspectives of transitioning young adults with cerebral palsy to independent living. Disability and Rehabilitation, 1–16. https://doi.org/10.1080/09638288.2025.2564289

Hickey, L., Nguyen, H. T. D., Harms, L., Culnane, E., Saunders, V., Imms, C., Ball, M., & Reddihough, D. (2026). Independent living transitions for young people with cerebral palsy in Australia: Aligning policy and practice with family realities. Frontiers in Public Health, 14, Article 1755553. https://doi.org/10.3389/fpubh.2026.1755553