Implications for early intervention

In most countries, families with children with Down syndrome will receive early intervention services. These services will vary considerably from country to country and even from place to place within a country but may include special­ist provision of health care, therapies and early home teaching services. The information in this book has implications for early intervention and a summary of these is provided here so that parents can consider what they do or do not need and early intervention services can consider how to provide an evidence-based service. There is much research on family needs that is relevant to a discussion of early intervention that is not discussed in this book but much of it is discussed in the Family book in this series. The authors have also written guidelines for good practice in early intervention in the context of English services and the UK gov­ernment’s Early Support programme, the principles of which will be relevant in most communities though resources and ways of delivering services may well be different.

The first year

Breaking the news

There is much literature highlighting the importance of how the diagnosis of Down syndrome is shared with parents. This news is usually shared with par­ents by a medical practitioner in a maternity unit and, despite guidelines to good practice having been available for many years, it is still sometimes done ‘badly’. The majority of parents have extremely vivid recall of how they were told that their baby had Down syndrome and this experience has a very pow­erful effect on their feelings for the child and their future together. It is very important, therefore, that training in good practice is continually repeated for staff in maternity services.

How families cope

There is much research on how families cope with bringing up a child with Down syndrome through childhood and adult years, and most of it highlights how well the majority of families cope and how positively they feel about the child and their contribution to the life of the whole family. However, the research also highlights the factors which make families, particularly parents, more vulnerable and less able to cope well - and these findings should inform the whole package of care and support provided under the heading of early intervention. The factors that make families less able to cope with bringing up a child with Down syndrome are largely the same factors that would make being a parent of any child difficult, such as poor housing, limited education, poverty, unemployment, being a single parent, being in an unhappy relationship with one’s partner, being socially isolated and having few friends or relatives who can help, and having mental health problems. Research into the effectiveness of early intervention services, particularly from the USA, stresses the evidence for the importance of these issues. The information presented in this book really stresses the importance of the emotional relationships between baby and parent, and the need for parents to be responsive, sensitive and available to the baby. This is very difficult to do if life circumstances mean parent’s lives are dominated by other day-to-day worries and stresses, in addition to their concerns about their baby’s disability.

A focus on the family

The first consideration, then, for early intervention services should be the needs of the family. In some countries, services will be available to support families with additional needs associated with the list of factors given above and in the UK a government initiative called Sure Start has been developed to try and address these needs in a co-ordinated way in our communities. In addition, a programme called Early Support, within the Sure Start initiative, is focused on the particular needs of families with children with disabilities from birth to 5 years (see Resources). Many of the materials developed by Early Support would be useful in all communities and they are all available as free publications to families and services in England or from their web site to others worldwide. The Early Support focus is to put families first and to promote partnership working between parents and professionals in early intervention services. A key part of this approach is to provide a keyworker to co-ordinate services for a family and to develop a family service plan, which states what the family would like for themselves and their child. Readers who would like to know more about this approach should go to the Early Support website. A second strand to the Early Support work has been to develop information for families to help them to understand their child’s particular needs and to support their development. Early Support has developed information on all the services and benefits that should be available to families and information on specific disabilities such as deafness, autism or Down syndrome. The authors of this book and their col­leagues have been, with the families who use the services of Down Syndrome Education International, the main authors of the Early Support information book for parents on Down syndrome and of the Developmental Journal for babies and young children with Down syndrome.

A focus on relationships

The content of this book has highlighted the central importance of social rela­tionships in the development of all children, therefore early intervention serv­ices or support for families should be able to provide support for families as they deal with their emotional reactions to the news that their baby has Down syndrome. They should also be knowledgeable about the early development of infants from birth and the development of infants with Down syndrome. At this stage, parents need information about their baby now but also about their baby’s future, therefore any professional working with them has a duty to have accurate and up-to-date knowledge of the development and future lives of children and adults with Down syndrome (see Living with Down syndrome, in this series).

A focus on encouraging pivotal behaviours

Practitioners responsible for providing support for the child’s development, whatever their particular professional training, should have a good knowledge of the literature on early development, effective early intervention and how to encourage the child’s development of pivotal behaviours.

A focus on self-regulation and behaviour

Equally important and linked, all practitioners should be well informed on all the factors which contribute to self-regulation and behaviour control over time and to be able to design and implement a behaviour management programme to help parents to prevent difficult behaviours or to change them if necessary.

A focus on inclusion

All practitioners should be aware of the evidence that inclusion for families and children provides the best outcomes. This means embedding services for fami­lies and children within ordinary community services and resources available to all families and children.

Toddlers and preschoolers

As children with Down syndrome move from babies to toddlers, then services tend to focus on particular aspects of their development. The expert knowledge of a speech and language therapist, physiotherapist, occupational therapist or a teacher may be invaluable in addressing particular aspects of develop­ment. Sometimes services are provided by specialists and sometimes by gen­eralist home teachers who address all areas of the child’s development. Either approach can work but co-ordination between services and professionals con­tinues to be important for families, and the overall service available to a family should be able to support the child’s development in the following areas.

Developing social relationships and managing behaviour

Families and children with Down syndrome should be able to draw on expert help in supporting their child’s social and behavioural development through­out the time from birth to 5 years.

Developing motor skills

Almost all children with Down syndrome will be delayed in their gross and fine motor development, therefore access to physiotherapy and occupational ther­apy should be part of a comprehensive programme.

Developing cognitive skills

Most children with Down syndrome will experience cognitive delay and will benefit from support for play and learning from the first year through home teaching and nursery or play group experience.

Developing speech and language

Learning to talk clearly is a challenge for most children with Down syndrome and speech and language therapy is an essential component of a compre­hensive early intervention programme. However, the speech and language therapist must be well informed about the specific pattern of language delays, speech production patterns, hearing loss and verbal short-term memory prob­lems associated with having Down syndrome - and evidence-based effective approaches for therapy.

Developing independence

A goal for all parents and practitioners will be to develop self-help and inde­pendence skills. These will depend on the child’s motor skills as well as their cognitive progress. The above list of skill areas will be familiar to practitioners in early interven­tion and implies a focus on skills or outcomes for children. Of course, new skills are the ultimate goal and evidence of success for all therapy or education pro-grammes. However, there is some evidence that a focus on teaching skills to a child by behavioural means may not help them to develop the underlying ‘pivotal’ behaviours that increase their ability to be independent learners.