Early intervention

Early intervention refers to all the ways that services aim to support babies and children with Down syndrome from birth to 5 years. These include health care, physiotherapy, speech and language therapy, occupational therapy and educational programmes designed to promote all areas of a child’s development.

The Trust has been particularly interested in the development of effective early intervention programmes to promote communication, speech, language and cognitive development.

Services to families may be delivered at a centre or in the family home. The most effective ways to offer early intervention services are still a matter of debate and evidence of the benefits for children and their families are still not clear therefore this is an active research area internationally.

Activities and achievements

The Trust has been involved in offering and evaluating early intervention programmes from the start of its work in 1979.

Professor Sue Buckley, was involved in the development of early intervention in the UK in the 1970s.

Evaluating the Portage model

The Trust’s first research programme (1980-1983) included an evaluation of the effectiveness of the Portage model for home based early intervention^[1,2].

The main findings highlighted that the service was highly valued by families and that the regular visits were a major source of practical and emotional support. It also identified that the rate of progress that children made depended on the amount of time their mothers had available to spend with them so, for example, children who were the only preschool child at home during the day  made most progress and children in families with a new baby born during the study made less progress.

It was clear that one model of service is not going to be best for everyone and some parents would have welcomed a nursery based service and the help of staff to teach their child rather than a home based one which put the main responsibility on them. Other parents thrived on the home-based service and enjoyed being the main interventionist. Within this study, the Trust’s first investigation of the early reading abilities of preschool children with Down syndrome was carried out^[3].

Providing Early Development groups

Since that first study, The Trust has offered an early intervention service at The Sarah Duffen Centre to provide advice on the best ways to promote children’s development and to provide information and support for families.

The Trust has focused on offering advice and activities to develop speech, language and literacy skills and provided the service in a group setting, bringing together 4-5 families with children of similar age^[4].

The Trust's services have been based on the latest evidence of effective practices from published research studies and staff have shared their experience of offering services in this way with other practitioners and parents across the UK and around the world.

Research studies have focused specifically on one aspect of development such as speech and language and are reported under those specific topic headings.

Early Support

Since 2004, The Trust has worked with the UK government’s Early Support programme and led the development of materials for families of babies and children with Down syndrome^[5].

This work has resulted in two publications which are available free of charge to families in England – an Information Book on Down syndrome (PDF) and a Developmental Journal which can be used to celebrate progress and support early intervention.

Early Support promotes partnership working with families and seeks to improve and co-ordinate service provision to families from the time of diagnosis. The Trust is currently training trainers who will initiate the use of the Developmental Journal across England.

Impact

The Early Development Groups support about 80 children and families each year with a direct service. Through publications and many training workshops each year the Trust staff share their expertise in effective early intervention with many families and practitioners.

Education

The Trust has published two books which discuss the key aspects of early intervention programmes and provide overviews of developmental issues for parents and practitioners, 2 book chapters, 3 articles and presented 9 papers at peer-reviewed national and international conferences. The Trust has been the lead organisation in the production of the Early Support materials for families and children with Down syndrome and has also published a DVD on activities for babies with Down syndrome.

References

1. Woods E. The effect of early home teaching on the child with Down syndrome [MPhil Thesis] Portsmouth, UK: University of Portsmouth; 1984.
2. Buckley SJ. The influence of family variables on children's progress on Portage. In A. Dessent (Ed). What is important about Portage? Windsor, UK: NFER-Nelson; 1984. p. 21-28.
3. Buckley SJ. (1985). Attaining basic educational skills: reading, writing and number. In Lane D, Stratford B (Editors). Current approaches to Down's ayndrome. Eastbourne, UK: Holt, Rinehart and Winston; 1985. p. 315-343.
4. Bird G, Wood A. Supporting children and families through Early Development Groups. Down Syndrome News and Update. 2003;3(3);74-81.
5. Buckley S. Early Support – new materials and services for families with babies and children with Down syndrome. Down Syndrome News and Update. 2006;5(3);124-126.

A full list of publications related to this area of work is also available.