Principles of managing a child with developmental disability

An integrated care model, involving general practitioners and specialists (eg paediatrician, geneticist), can help children with disabilities to reach their potential, while ensuring continuity of care and support throughout their lifespan.

Principles that inform the care of people with developmental disability of all ages are discussed here.

Children with disabilities should enjoy full human rights and fundamental freedoms on an equal basis with other children¹, including the opportunity to:

• live in a family home
• receive services that build on the strengths of the child and family, address their needs, are responsive to their culture and personal priorities, and are delivered through research-based practices
• receive childhood services and supports as early as possible; see Early childhood intervention services
• receive services if they are at risk for developmental delay
• receive services delivered in usual settings with same-aged peers who do not have disabilities
• experience family, school, and community participation; see Support and services for children with developmental disability and their family.

To optimise care and support for a child with disability, identify:

• areas of strength, resilience and ability—build on them to promote self-esteem, autonomy and participation
• impairments and disabilities—work to minimise their effects on function
• factors that increase connection with their culture and family.

Regular review by their general practitioner and relevant specialists is recommended. See advice on assessment of developmental delay and disability. For strategies to facilitate integrated care, see Facilitating a multidisciplinary approach to care. See also reasonable adjustments for strategies to improve the consultation experience.

Although much will be uncertain while the child is very young, it can be helpful for parents to know what skills the child is likely to achieve (eg dressing independently, reading). The picture is likely become clearer over time. Learning specific skills (eg walking, talking, toileting) are often goals for the child’s family, but sometimes the effort needed to acquire these skills may be too high.

See Role of the general practitioner for advice about advocacy for people with developmental disability, and support for family and carers.