Meeting the Needs of Children with Disabilities

Families and Professionals Facing the Challenge Together

Helen K. Warner, Helen K. Warner

• Éditeur: Routledge
• Année: 2007
• ISBN:
  9781134464418
• Édition: 1
• Sujet: Médecine
• Sous-sujet: Soins infirmiers en pédiatrie

This textbook provides the reader with an insight into the needs of children with both physical and learning disabilities, particularly within an acute care setting. It considers the principles that underpin the fundamental aspects of care delivery to children with special needs. The key areas of knowledge and practical skills covered include:

• the social and historical context
• challenging assumptions
• best practice for giving news to parents
• communication methods
• play and movement
• nutrition and feeding
• boundary setting
• respite care
• transitions into adult services.

This interesting book covers practice areas identified by the English National Board as essential for student nurses. It will also be invaluable for qualified nurses and for other health professionals working with children with disabilities.

1
Meeting the fundamental needs of children with disabilities

Helen K. Warner

Raising awareness

Attitudes towards disability within British society are changing from those that were disempowering and excluding, to a more enlightened approach based on the social model of disability. This chapter will explore the recent changes within the contexts of acute hospital care and a child assessment centre.

Current attitudes towards disability appear different from those existing in the 1960s that hid away the physically and learning-disabled in large institutions, and labelled them as the ‘socially dead’ (BBC2 1999). However, preconceived ideas and prejudices surrounding disability still exist and are difficult to change. This can create problems for parents striving to obtain the best services for their children with disabilities.

Working within a Child Assessment Centre, the writer became very aware that families often still have to fight to get what they want for their children regardless of whether it is a medical, educational or social service to which they are entitled. Parents need to quickly learn to be assertive, and to find the energy to challenge a system and resources that do not always meet their requirements. All this in addition to caring for a child with special/additional needs may leave the parents feeling mentally and physically exhausted.

Giddens (1995) stated that: ‘in a society that places high value on youth, vitality and physical attractiveness, non-participants become invisible’ (p. 651). This raises the question of how the ‘invisible’ are made more visible (Warner 2000). The establishment of a Disability Advisory Group (DAG) in 1998 for every NHS Trust could be seen as one way of pushing disability up the social and political agenda, but it gained little more than a passing mention from the media. The formation of the Disability Rights Commission (DRC) in April 2000, by the Department of Employment and Education, appeared to suffer a similar fate.

The DRC was established to ensure that the Disability Discrimination Act (DDA, DoH 1995) was revised and discrimination eliminated. It also had the power to investigate any allegations of discrimination. It was a crucial step in the struggle for the disabled to be given civil rights and yet attracted little media interest.

In contrast, a great deal of media coverage was given to remarks made by the footballer, Glen Hoddle (The Times, editorial, 1 February 1999). Hoddle suggested that disabled people are being punished for sins in a former life, which must have caused great offence. The Prime Minister became involved and Hoddle lost his job as Manager of the England Football Team. However, the profile on disability issues was only briefly raised.

Raising awareness of disability issues is a continuing process and one which still has a long way to go. Disabled people remain disadvantaged in many areas of life as the facts from the Department of Social Security (DSS 1999) shown in Table 1.1 below illustrate.

Education

Education is another area where the disabled child may be disadvantaged. Following publication of the Within Reach 1 study (1992) and Within Reach 2 survey (1993) carried out for the National Union of Teachers (NUT) and the Scope Advisory and Assessment Service for People with Cerebral Palsy, a third study, Within Reach 3 (2001) was commissioned. This revealed a lack of knowledge about the accessibility of schools, even though the Education Act (1981) had set out to make appropriate provision in mainstream schools, wherever possible, for children with special educational needs (Lennard 1992).

This provision was to be based on individual assessment of children’s needs, with parents sharing in the assessment, planning and decision-making process. However, the reality is that procedures for assessment and statementing are so complex that there is a real risk of delay in reaching a conclusion. Even when a decision is reached, the Scope study found that there was often disparity between parents’ and professionals’ views, and parents feeling distressed to find themselves in conflict with the agencies ostensibly set up to help them (Lennard 1992).

Many local education authorities (LEAs) were found to have been making decisions about children’s education on the basis of the resources they had at their disposal. Segregated education is a cheaper option, regardless of the

Table 1.1 Disadvantages faced by disabled people

•	Only 18 per cent of primary schools and 8% of secondary schools have complete wheelchair access.
•	Nearly half (47 per cent) of essential equipment needed to help some disabled people communicate is not funded by statutory organisations.
•	Over 50 per cent of disabled people have difficulty using public transport.
•	Households with a disabled person have an income 20–30 per cent lower than that of the average household.
•	Disabled people are seven times more likely to be out of work.
•	One in three disabled people have been refused access to a public place e.g. pub, restaurant, theatre or leisure centre.

child’s need to be integrated into society. In addition, teachers in mainstream schools were found to be inadequately prepared to integrate disabled children into their classes.

Inclusive education is a prerequisite for establishing an inclusive society. The change towards an education system designed to include everyone rather than making disabled children ‘fit’ into a system not designed with their needs in mind has, at last, the support of government, with the introduction of a policy for increased inclusion of children with disabilities into mainstream schools (Gibson and McGahren 2001).

The Schools Access Initiative (SAI) launched in 1995 by the government to provide funding to improve access to the premises of mainstream schools has been welcomed. However, education is not just about access, but is a process which enables disabled children to receive their rights and entitlements and to feel a sense of achievement which will increase their self-esteem and self-confidence. To provide this, teachers and others involved in school education need to be trained in disability awareness. Extra help and support is needed to enable children with special educational needs (SEN) to get the most out of the educational system alongside their peers, but they often only get the support they need through enforceable statements of SEN. However, the recent changes in education have been made with the aim of extra support to schools so that the statementing process is fast becoming obsolete even though there will always be some children whose needs will not be adequately met within the mainstream environment. There is also an increasing emphasis on academic instruction in early childhood education that is based on misconceptions about early learning (Elkind 1986; 1987). Bredekamp (1987) asserts that this is incompatible with a curriculum that is based on developmentally appropriat...