Examples of early intervention programmes for children with developmental disabilities

In this step, we are going to highlight examples of early intervention programmes from low- and middle-income countries, in order to demonstrate what can work, even when services, resources and staff are limited.

The examples detailed below are innovative programmes developed by non-governmental organisations, research institutions, disabled persons organisations and healthcare professionals.

The examples were gathered from the Mental Health Innovation Network, a platform which helps a global community of mental health innovators – researchers, practitioners, policy-makers, service user advocates and donors – share innovative resources and ideas. Many of the community work in child development, disability and early intervention. We suggest visiting the site and joining in the forum conversations, if you are interested to discover more examples of early intervention programmes from across the world.

Examples of early intervention programmes

Sangath

Programme: PASS+ Parent-mediated Intervention for Autism Spectrum Disorder in South Asia.

Objective: To develop an early detection methodology and an expanded intervention package for children with Autism in India and Pakistan.

Summary: There is an estimated 5 million children with autism spectrum disorder (ASD) aged between 2-9 in India.¹ The PASS+ programme addresses two major unmet needs of families of children with ASD: the lack of early identification which delays intervention and treatment; and the lack of access to evidence-based interventions due to geographical and human resource barriers. To address these needs, PASS+ includes: a package aimed at enhancing the early detection of ASD (the Detection Package); and a holistic package of care for families of children with ASD for delivery by lay health workers (the Intervention Package).

The Treatment Package addresses the core communication difficulties of children with ASD. Activities focus on:

1. Establishing shared attention in play
2. Creating a harmonious interaction through language
3. Increasing the understanding of language
4. Establishing routine and anticipation
5. Increasing communication functions.

Additional modules address other difficulties children have with behaviour, feeding and sleeping. Intervention activities are designed to be delivered by lay health workers in the homes of families.

Impact: Research demonstrated the feasibility and acceptability of the intervention to both families and healthcare professionals in a low- and middle-income country. The programme resulted in increased communication initiations by children with ASD and this ultimately reduced symptom severity.² The programme is currently undergoing a definitive evaluation of the clinical effectiveness and cost-effectiveness, under the research project COMPASS.

The London School of Hygiene & Tropical Medicine

Programme: ABAaNA

Objective: To develop an early detection methodology and an expanded intervention package for children with Autism in India and Pakistan.

Summary: The ABAaNA studies (Association between Birth Asphyxia and infection amongst Newborns in Africa: perinatal risk factors for neonatal encephalopathy in Uganda), show a high risk of neurodevelopmental impairment amongst infant survivors of neonatal encephalopathy in Uganda.³ There are very few rehabilitation services available for very young children (0 to 2 years) with an evolving developmental disability in low-income settings. In response, LSHTM developed a participatory caregiver training package, adapted from a training resource called Hambisela and Getting to Know Cerebral Palsy. The programme provides supportive care and peer-support to children and their families in the first 1000 days after birth.

Groups of 6-10 caregivers come together in the local community on a regular basis (weekly or monthly). The group works through a 10-module training programme which aims to help parents and caregivers learn practical caring skills (such as positioning, feeding, play), as well as offering psychosocial support and an opportunity for peer learning. Training sessions are delivered by a pair of facilitators: a therapist (physiotherapist or occupational therapist) or community health worker (nurse, primary care professional, special education teacher) together with a parent of a child with a developmental disability. Although sessions are led by the facilitators, there is an emphasis on problem solving, peer support and participatory approaches to enhance empowerment of the caregivers. As well as group training sessions, the community health worker/therapist visits parents and caregivers after each session to follow-up on what they have learned.

Impact: An evaluation of the ABAaNA programme is ongoing in Uganda. An evaluation of the initial programme ‘Getting to Know Cerebral Palsy’ found significant improvements in the quality of life among caregivers, as well as improvements in knowledge and confidence in caring for their child, and similar results are expected.⁴

Human Development Research Foundation

Programme: The FaNs for Kids Project

Objective: To reduce the impact of intellectual and developmental disorders in the lives of children in Pakistan and related low-income countries.

Summary: In Pakistan, many barriers to care exist for children with developmental disorders, due to stigma and discrimination, poor awareness of the medical need among family members and healthcare providers, and the lack of specialist services outside of urban centres.

The programme comprised of several components:

• Campaign to reduce stigma associated with the condition
• Work with community health workers (CHWs) to provide mhGAP interventions to the children
• Train family volunteers (called “champions”) to provide support to their own children and a network of 5-7 other families
• Use electronic and mobile health technology to help the detection of children with developmental disorders, for the training and supervision of family volunteers and to sustain the family networks

Impact: After the intervention, an evaluation of the programme showed clinically meaningful improvements in a child’s understanding and communication, mobility, self-care, engagement in school and non-school activities, participation in society and less stigma. Overall, the intervention cost just $2 per family per month.⁵

The programme is currently being scaled-up to reach a population of 1 million (about 3,000 families and 500 volunteers).

We hope that these examples have given you an understanding of early intervention programmes in lower resourced settings. We’d love to hear your thoughts on each of the programmes and please do share any examples of early intervention programmes from your setting.