Infancy and early childhood are times of great importance for all children and their families Current theories of human lifespan development suggest that many factors help to shape patterns of growth and learning: ‘the child’s temperament, parent styles, opportunities for learning and the family’s social and economic environment, among others’ (Santrock 1995).
Current service provision
The presence of a condition leading to disability is an additional source of influence on the development of some children. Early intervention programmes set out to ameliorate the impact of disability and/or disadvantage on children from birth to the time they make their transition to first-level schooling. These programmes have been very effective in changing the thrust of service development, not only for children but also for their families. For most parents, the birth of a son or daughter is anticipated with great joy and excitement. A child born with an apparent disability can readily challenge and alter parents’ expectation. Diagnosis of a disabling condition at birth is possible if an infant is born with an identifiable syndrome or medical condition. Other children may develop disabilities later and their needs will emerge only during or after the first year of life. Meeting the needs of all children, not only those whose condition is recognisable at birth, but also those with emerging needs, has not followed any agreed national strategy. The availability of a service has for some families been a matter of where you live rather than automatic access to an integrated, well resourced and locally developed service based on national priorities and guidelines.
Planning across administrative boundaries can be enormously difficult in large delivery systems (Mitler 1979). It can be equally challenging in some regional health services between community care areas In Ireland, in the past, the delivery of an integrated, uniform and equitable service between community care areas presented Herculean challenges. One of the primary objectives of the Health Services Executive (HSE) is the provision of an integrated service based on quality and equity. For some parents, their first contact with early services takes place in the hospital/maternity unit or when the birth notification reaches their local health board. Children aged up to 2 years, who have disabilities, are also identified to child surveillance provided by their public health nursing home visiting programme or by a general practitioner (primary care medical doctors) who refer some children for special intervention. Parents may also contact service agencies directly if they have concerns about their child’s development. The quality of that contact can very often be a harbinger of what is to come Family composition today in Ireland reflects recent social change and greater cultural diversity. The family as a unit (father and mother as married partners and their children) is no longer the norm In 1996, just 39% of Irish households comprised a married couple with children and 28% of all births in Ireland were outside of marriage—more than the average EU rate (Kennedy 2001). Recently too, Ireland has been seen by women from abroad as a desirable place to give birth, and the number of infants born in Ireland to mothers from outside. Europe has increased Immigration into Ireland has generated cultural diversity not easily mapped onto the services provided to date by regional health boards Whatever the composition of a family, its members must grapple with the presence of a child with apparent disabilities and what this means for them. Providers of special services and national associations are increasingly aware of cultural diversity and they also recognise the needs of brothers and sisters of a child with disabilities.
New developments in service provision
The literature on early intervention makes a distinction between first- and second-generation research on early intervention programmes. First generation programmes focussed on the individual child. Second generation early intervention programmes recognised that a child’s development takes place within a family context and is influenced by a relationship within the family (Guralnick 1998). This understanding is beginning to be recognised in how early intervention services are delivered by the Health Services Executive, by highlighting the need for ‘a team around the child’ (Mid Western Health Board 2002). In the past understanding of a child’s needs was often based on individual assessment from different professionals, sometimes working alone, other times on an interdisciplinary, multidisciplinary (or more recently transdisciplinary) basis. Recently enacted legislation (Epsen Act 2001, Disability Act 2005) puts centre stage the assessment of need for early intervention; this means having parents as central and participative members of the process (Gallagher 2002). Participative interventions will involve family members and therapists to ensure a child is involved, encouraged and assisted to grow and develop to their full potential.
Second-generation early intervention research emphasises the importance of supporting the family around the child, while conscious of the need for a respectful and trusting partnership with parents. Such collaborative partnerships must take account of a child’s vulnerability (Ramey and Ramey 1998; Bailey et al 1998)
Early Intervention programmes share a number of objectives, to:
- Enable parents to optimise the time spent with their children;
- Complete specific pieces of work based on identified need;
- Develop the relationship between parent and child;
- Make services more accessible;
- Provide a collaborative working structure for parents, professionals, service providers
Nationally the HSE has committed substantial resources to children’s services, although these resources are not always evenly distributed which makes for a compelling need to monitor and evaluate whether early intervention programmes are delivered to plan, implemented equitably and achieve a quality standard (Rush 2002). This need was previously highlighted by a national survey on early intervention for young children with intellectual disabilities undertaken by namhi in 1995. Throughout the country many innovative approaches to service delivery are in place, but in the absence of any coherent national policy on the aims and outcomes of early intervention for young children with developmental delay.
The strategic review of disability currently underway (Department of Health and Children 2006) is likely to identify the need for an integrated early children’s service linked to disability legislative requirements.
Future service requirements
Regardless of the outcome of any review, the HSE has to ensure national operational policies can effectively address for parents what happens when a child with a disability is born in a maternity unit today:
- How is the information shared with parents?
- Do maternity units have in place agreed protocols for breaking the news?
- Are the protocols adhered to?
- Are parents linked with local services?
- Do local services assign a named person to work with the family?
- Is there clarity at a local level as to who does what?
- Is the local child surveillance service sufficiently well integrated to pick up children whose needs only unfold in the first and second year of life?
- Is there a home visiting programme available for a child with special needs?
- Are therapy services available?
Equity is a substantive underlying theme in all recent health and related publications (Department of Health 1994; Commission on the Status of People with Disabilities 1996).
To achieve that equity, the HSE should:
- Ensure that resources reach parents as needed;
- Promote community awareness;
- Ensure a library of information is available to parents;
- Have in place individual programmes for each family;
- Source and, where necessary, support resources such as preschool education in the community;
- Listen to parents; Ensure flexibility in service provision;
- Endeavour to customise the supports to a child in the family
Early intervention services set out to:
- Enhance the development of children already exhibiting delays of known and unknown aetiology;
- Alter the developmental trajectory;
- Prevent secondary complications;
- and Prevent delays from occurring for children at risk (Guralnick 2004)
A child with special needs in the family presents real day-to-day concerns for parents. All interventions must take account of parents’ needs in what is clearly a stressful period by listening carefully to their concerns and focussing on supporting them around their child’s identified needs. Early intervention programmes are posited on the basis that there is a window of opportunity to optimise the child’s receptivity and that an appropriate intervention will have long-term benefits for the child and the family. Clearly intervention services in the community must be adequately resourced and linked to effective follow on educational programmes if observable gains are to be made, sustained and retained over time. The latter is far more problematic, given the absence of integrated accessible preschool services.