Down Syndrome South Afica









The Importance of Early Intervention


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THE IMPORTANCE OF EARLY INTERVENTION

1.1 Introduction: What does ‘Early Intervention’ mean?

In the field of child development intervention means ‘coming between’ any negative, disabling effects that a developmental delay or disability might have on the developmental process in general. This is in an attempt at least to minimise, if not to prevent the impact of the disability/delay on the child’s development. For example, when a child is born with cerebral palsy, the use of simple, physical exercises as early as possible can help to prevent the muscles from contracting permanently and consequently limiting the full use of the limbs. Most people who are involved in the field agree that children with Down syndrome who receive help from early in life are more advanced than those without such help. Up to the middle years of childhood at least, they are more likely to fall into the mild to moderate categories of intellectual disability than the severe or profound. Generally speaking, children with Down syndrome are responsive to environmental influences and do best in homes that provide love, care and plenty of stimulation and a variety of experiences. Planning and carrying out special activities can be beneficial to both parents and the young children. It helps them to get to know each other, makes the days more satisfying and enjoyable and prevents any possibility of the child developing more slowly because of the lack of the necessary encouragement and stimulation. However, there does not appear to be any particular benefit to carrying out intensive training regimes which may be unpleasant to the child and the parent, and in some cases can interfere with a balanced family life. (Cunningham C. 1992.)

1.2 Reasons for Early Intervention

There are many additional good reasons for early intervention:

• The first patterns of learning and behaviour that influence the rest of development are set down in the early years.

• There are certain critical periods during the early years when a child is most responsive to learning experiences.

• A child’s environment and early experiences, particularly if these are nurturing or depriving, have a major effect on development and learning. Both greatly influence the degree to which a child reaches his/her full potential.

• Parents usually need help in establishing constructive patterns of parenting with a young child experiencing a disability and in providing adequate care, stimulation and training for their child during the critical early years when basic developmental skills should be acquired.

• Early intervention implies some socio-economic benefits in that prevention or early treatment of developmental problems in young children may reduce the need for management by society of more serious problems later. I.e. it can be cost effective.

1.3. Definitions

You will see some definitions of early intervention as being “programmes of enrichment designed to provide developmentally appropriate activities for babies and toddlers who are at risk for a variety of conditions” (Denhoff, 1981.) However this description reflects a child-focused emphasis with no acknowledgement of the other, broader-based social influences that affect behaviour and development (family life, school, community, culture and the social context). Recent research shows that successful intervention programmes treat children as individuals situated within a family rather than as isolated targets of rehabilitation. We know that the quality of the care-giving environment influences the child’s development. Intervention strategies try to change that environment in a number of different ways, so that the child is given the best possible opportunities for learning and growth. Circumstances within the family, the school and the community will have an effect on the development of the children living in those contexts. Intervention goals have to take this into account. Any programme that focuses on the child alone, without paying attention to his/her environment usually has little effect. “Long term positive human relationships and the provision of stable, healthy environments for children are the most important determinants that we know of for normal human development” (Richter and Griesel, 1994: 85). So it would seem that a general definition of early intervention should read as follows: “Early childhood intervention consists of multidisciplinary services provided for developmentally vulnerable or disabled children from birth to age three years and their families. These programmes are designed to help child development, lessen possible delays, work with existing problems, prevent further worsening of the condition, limit the possibility of getting additional disabling conditions, and/or help the family to adapt the way they function. The goals of early intervention are achieved by giving developmental and therapeutic services for children, and support and instruction for their families.” (Meisels and Shonkoff, p xvi, 1994.) This definition implies that services will be provided that are sensitive to the worries of the family, that build on family strengths and that help families become able to support and help the development of young children, thus preventing developmental problems from worsening. But early intervention is more complex than this. It requires real commitment, responsibility and long term effort. We now know that it is usually not enough to intervene just for a short period in the child’s life. Research has shown that we need to find the right intervention for each age of the developing human being.

1.4 Problems that can prevent the introduction of Early Intervention Programmes

There are also a number of other problems in South Africa which complicate the situation even more:

• Adequate provision of support services to those with special needs in South Africa has been seriously neglected despite knowledge of the positive effects of support on several family, parent and child outcomes

• There is fragmentation of existing health services and weak referral chains

• Urgent intervention is needed in South Africa to break into the cycle of disadvantage

• Bad overcrowding in hospitals, serious shortage of time, space and equipment can mean late diagnosis of disability and therefore start of intervention. (Success of an early intervention programme depends not only on screening, but on appropriate and adequate follow-up procedures for diagnosis.)

• In some cases, inappropriate models of service delivery are used where parents are expected to implement professional recommendations without question even though they have not been involved in the decision-making process. Delivery of services seldom takes note of essential family characteristics (cultural diversity, economic status, family preferences and needs for services)

2. What is needed?

In order to make meaningful intervention goals, parents need to be appreciated as important members of the partnership. N.B. Treatment of the disabled child alone, without consideration of his/her context achieves little and may even damage the process. There is a need for universal use of the trans-disciplinary approach. Otherwise, parents feel they have no control over their own circumstances and their confidence in their ability to improve their child’s skills can be undermined. Too much dependence on professional advice seems to result in a “learned helplessness” and immobilisation of parent initiative. All too often, parents often have to seek out existing services alone and unassisted and family needs are not assessed at all prior to the beginning of an intervention programme.

3. The important influence of the broad, social context on child and family functioning. Neighbourhoods are important areas for children’s development Both macro-environmental factors (poverty, disadvantage, one’s social circumstances etc.) as well as micro-environmental factors (aspects of the home environment, care-taking practices) can affect child development High risk environments prevent or complicate healthy development because they make weaknesses worse and reduce the kind of support that can be given.

3.1 Influential factors operating within deprived South African environments

• Risk filled physical environments

• Poor parental education and unemployment

• Fragmented family life, unstable and disrupted childcare practices

• Economic and psychological dependency • High levels of life stress and social isolation

• Poor parental morale and emotional withdrawal

• Infant vulnerabilities (e.g. temperament, illness, sex)

• Difficulties in care-giving The longer the child is exposed to adverse environments, the more the chance of his/her development being negatively affected. Very early intervention is required – family risk and opportunity factors have effect as early as the child’s first birthday. The most important determinants for normal human development are long-term positive human relationships and the provision of stable, healthy environments for children (Richter and Griesel, 1994:85) It is the enabling external and environmental factors that foster and support resilience in families and children that are open to intervention.

4. A Social Systems Definition of Early Intervention

Early intervention can be thought of as the clustering together of the many different types of help, resources, services etc. that can be given to families by individuals and groups in the society within which they live. The goal of family support programmes (also known as family-focused intervention) is to encourage families to be independent by developing their own informal support networks.

• Family support is a primary goal of early intervention

• Families should be able to choose the services they want

• Families should be able to choose their level of involvement in the decision-making process

4.1 Social Support Factors as Enabling Environmental Influences

Social support refers to the resources (potentially useful information etc.) given to individuals/parents and families in response to the need for help. It can be a major source of intervention The family’s personal social network (people and institutions in contact with the family e.g. friends, neighbours, clubs, religious institutions, work colleagues etc.) is the main source of support to families. N.B. It is most important that professionals working in the field of early intervention realise that giving support has the best results when offered in response to a family-identified need. When families are not supported, all their energies tend to be directed towards getting basic family needs met rather than helping the child with a disability. Intervention must consider each family situation as being unique. One approach is not ideal for all families. There has been a fundamental, worldwide shift from domination to co-operation and partnership in human relations.

5. Suggestions for a Way Forward

It would seem therefore, that early intervention services which build upon relationship patterns, inter-personal skills and strengths should promote satisfying and fulfilling interaction among family members, encourage the development of the potential of the family group and individual family members, and contribute to the family’s ability to deal effectively with stress and crisis. Strong, supported families deal differently and more effectively with their problems The resources that can make a difference in a child’s life (families, schools, service agencies) must work together.

5.1 Parent-Professional Relationships Must Change

• Partnerships should be encouraged, not paternalistic approaches

• Relevant information needs to be shared. BUT all parents cannot be expected to be equal partners in decision-making because they are neither equipped to do this, nor desire to do so.

• Professionals should no longer be viewed as the only source of support for meeting family needs.

6. Typical Components of Family Focused Intervention

Special needs of families can be met by: 

*  Provision of a high quality programme of services for the child

• Helping family develop relevant social support network

• Specific training in certain areas

• Listening and sensitive response, guidance in solution of problems i.e. the actual service may be something the parents do themselves.

• Real advantage often lies outside of direct addressing of child related problems

7. Goals for Intervention

• To provide an educational environment or adapt existing ones so that they do not penalise a child for having a disability. Experiences must be brought to the child so that learning can occur.

• To teach special skills to help the child cope with the disability. These skills should also help the child overcome some of the limitations imposed on learning and the normal everyday activities experienced by able-bodied children.

• To create alternative ways for the child to learn and perform through the use of special materials, adaptive equipment, prosthetic devices and teaching techniques.

• To teach the child developmental skills that should be acquired but that may or may not emerge through the normal course of events in the young child’s life because of the disability.

• To help the child acquire adaptive skills leading to greater independence and competence so that he/she can o function within the mainstream o achieve a sense of self-mastery, and o develop a positive self image

8. Conclusion

Creative ways of making the best use of existing resources are possible and simply need to be explored actively. Collaboration between professionals of all disciplines associated with early intervention of children at risk should be encouraged and supported by similar co-operation between policy makers, administrators and direct service providers.


Written by Dr Gill Lloyd for DOWN SYNDROME SOUTH AFRICA

Acknowledgements Cunningham C. 1992, “Understanding Down Syndrome. An Introduction for Parents.” Souvenir Press and Brookline Books. Denhoff E. 1981, “Current Status of Infant Stimulation Enrichment Programs for Children with Developmental Disabilities.” Paediatrics, 67 (1): 32-37 Engelbrecht P., Kriegler S. M., & Booysen M. I. (eds.) 1996, “Perspectives on Learning Difficulties. International concerns and South African realities.” J. L. van Schaik Lloyd G. 1996, “The Role of the Community in the Rehabilitation of the Disabled: A study of medical, psychological and social factors in the effective management of the pre-school, English-speaking, hearing impaired child in Gauteng.” Unpublished Ph.D. thesis: University of the Witwatersrand. Meisels S. J. and Shonkoff J. P. (eds.) 1992, “Handbook of Early Childhood Intervention.” Cambridge University Press Richter L. and Griesel R. 1994, “Malnutrition, Low Birthweight and Related influences on Psychological Development” in Dawes A. and Donald D. (eds.) 1994, “Childhood and Adversity. Psychological Perspectives from South African Research. David Philip Publishers (Pty) Ltd.