By Abha Ranjan Khanna
Children with developmental disabilities can lead a rich and rewarding life, yet as a group, are among the most vulnerable and excluded within our communities.
Developmental disability is a permanent cognitive and/or physical impairment that usually occurs in the early years of life but can occur any time before the age of 18 years. Disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.
Common neurological non-progressive but lifelong developmental disabilities with onset in early childhood or at birth include the autism spectrum disorder, cerebral palsy, mental retardation, spina bifida, Down syndrome, epilepsy, Tourette’s syndrome and traumatic brain injury. Progressive neurological disabilities such as Duchenne Muscular Dystrophy, Friedreich’s Ataxia and Huntingtons Disease are those that progressively get worse and incapacitate functional skills.
Early intervention for children with developmental disabilities involves timely provision of an optimal nurturing and learning environment that aims to maximise developmental and health outcomes and reduce the degree of functional limitations. It is a system of coordinated services that promotes the child’s growth and development and supports families during the critical early years.
Early intervention can provide primary, secondary and tertiary prevention. Promotion of long-term health and well-being through early detection of determinants of adverse outcomes should be a feature of early intervention programmes.
Early intervention ideally follows early identification of developmental problems. When developmental problems are identified, a comprehensive assessment and diagnosis must be carried out. It must examine the functional abilities, developmental diagnoses, health conditions and other factors likely to influence future outcomes and well-being. Identifying these factors enables parents and professionals to better match the intervention and support to the child and family’s needs.
There is evidence that providing support and services for infants and young children with early developmental impairments and their families can alter the child’s longer term developmental trajectory, and reduce the risk of secondary health and psychosocial complications. Early intervention programmes are best delivered in a coordinated, planned, family centred manner that reflects a life course approach to health and well-being outcomes.
Children with disabilities may not think of themselves as having a disability. “Therefore, working with children with disabilities requires carefully tailored approaches. Labelling a child solely in terms of their diagnosed condition should be avoided. They are children first and aspire to participate in normal family and peer-group activities.”
Supporting the family is a crucial component of early intervention programmes, as the family has a key role in fostering their child’s developmental potential and may experience additional stresses as they meet the special needs of their child. Even when the child might continue to experience significant limitations in their day to day skills, early intervention can improve function and increase the ability of the family, services and the community to support and include the child.
Globally, about 15 per cent of the world’s population lives with some form of disability, of which two to four per cent experience significant difficulties in functioning. The human rights implications for early intervention services ensures increasing calls for adopting a human rights based approach to planning and delivering health services for people with developmental disabilities.
Tangible evidence of such an approach includes: improved policy with measurable outcomes, improved service access via clear referral pathways and the sharing of resources across disability and (mental) health services, and improved service delivery through training and education initiatives for both the mental health and disability workforce.
This approach emphasises that even in the absence of likely significant cognitive gains to be made from early intervention, the child with disabilities should nonetheless receive support to continue to enable them to participate in their family and community. Both the UN Convention on the Rights of the Child and UN Convention on the Rights of Persons with Disabilities have relevance for provision of early intervention for children with developmental disabilities.
Extensive evidence exists that our systems of care for young children remain excessively complex and fragmented, characteristics that risk limiting effectiveness of interventions.
(The writer is an occupational therapist.)