The Services Available to Disabled Children
Disability is all too often seen as a social problem i.e. it is seen either in terms of personal tragedy or of blame. Disability has been theorised in a number of different ways, most of which locate the problem in the individual rather than the broader social, political, and economic influences. This has implications not only for the location of the blame for social problems but also for the ways in which services for certain groups are delivered and accessed. All too often access to services is hindered for children with disabilities and the burden of care is left to the family (Moore, 2002). In many cases it would seem that if a child has a disability then this is seen as a matter of private concern for families. The present Government advocates a mixed economy of welfare where welfare is provided in part by the state and partly by private companies operating for profit. The shift from public to private has received much publicity and contributed to social problems and to social exclusion (Giddens, 2001).The mixed economy of care (largely as a result of the 1990 NHS and Community Care Act) has meant that access to care for children with disabilities has become problematic. Thus families who are already stretched both financially and emotionally face further stress as the result of being unable to access appropriate care and services for their child. This tends to support the view that having a child with a disability results in the family as a whole being disabled by the unjust society in which it is situated (Fazil et al, 2002)..
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Within the human services great emphasis is placed on the rights of the service user, and this discourse is also evident in Government debates on social support and caring for people with disabilities. All too often however, this remains at the level of discourse and is not followed through when it comes to policy making. This assignment will therefore undertake a critical review of research into the services available to disabled children to assess whether the problem is as broad as some theorists would have us believe, and what might be done to alleviate the problems faced by families who have a child with a disability.
What services are available to children with disabilities and what are the difficulties associated with accessing them.
The area of interest is children with disabilities. The outcomes are what services are available and what if any difficulties might be associated with accessing those services.
- To carry out a critical review of literature to discover what services are available to children with disabilities.
- To ascertain whether it might be argued that perceptions of disability might affect what services are on offer and how these might be accessed.
- To assess whether parents receive accurate information from professionals
- To make recommendations
A broad search was undertaken of the following:
Disability and Society
British journal of social work – Child: Care, health and development
A broad search of Taylor Francis journals and Google Scholar was also undertaken. Key word and key word phrases were, disability, family, service users, disabled children, disabled children and their access to services, access to services for disabled children, effects of disability on family life.
Part of the problem for disabled children and their families has been an over-reliance on the medical model of disability which locates the problem within the person. Inclusion discourses and debates about discrimination tend to suggest that this pathologising of children with disabilities is further extended to their families for example Bowler and Lister Brook (1997) when speaking of children with Downes Syndrome say that:
The identification of a genetic basis for Downes Syndrome led many researchers to explore the possibility that there might be behavioural phenotypes in addition to physical phenotypes that result from specific genetic abnormalities (Lister and Brook, 1997 p.13).
Clearly this is locating the problem within the child and does nothing to improve perceptions of either the disabled child or his/her family thus discriminating against the family as a unit. Most of the studies looked at in the following review, and the ones concentrated on in the analysis, report distorted perceptions of disabled children and their families. They also report that services for disabled children are not consistent nor easily accessible.
The key concepts that were present in the literature were an assumption that people have plenty of extended family support, use of formal and informal care arrangements, any difficulties in securing access to appropriate services, and the effects that having a child with disabilities has on families. Most of the research indicated that across the board service provision for children with disabilities was at best patchy and at worst lamentable and that it was this, along with perceptions of disabled children and their families that affected access to appropriate services.
The review begins with an indepth assessment of three studies in particular and then reviews the concepts generally.
Families and Children with Disabilities
Fazil et al (2002) undertook a triangulated study (i.e. one that uses both qualitative and quantitative research methods) into the circumstances of twenty Pakistani and Bangladeshi families in the West Midlands who had at least one disabled child. The aim of the research was to try and understand whether and in what ways the discrimination that these families might face was compounded due to the fact that they had a child or children with disabilities. The researchers used a combination of structured questionnaires and semi-structured interviews to obtain their results. The research focused on parents’ experiences, their use of formal services, their material circumstances, and the ways in which having a child/children with disabilities affected their lives. A significant finding of this research was that while Government discourses centre on the integration of service provision in Birmingham (where these families live) there was:
The absence of systematic services which came across most strikingly (Fazil et al, 2002,p.251)
This view is supported by research undertaken by the Audit Commission (2003) whose findings suggested that across the country, rather than the integrated and joined up services that are promised, service provision was a lottery. How much service and what kind of services offered to disabled children and their families depended very much on which part of the country they lived in.
Clearly the move to make partnership working the norm does not always succeed. Molyneux (2001) maintains that this only works when certain guidelines are established at the outset. His research into successful inter-professional working established three areas that contributed to the success of such partnerships. Staff needed to be fully committed to what they were doing and personal qualities of adaptability, flexibility and a willingness to share with others were high on the agenda. Regular and positive communication between professionals was seen as endemic to good working relationships and service delivery. This communication was enhanced (in the study) by the instigation of weekly case conferences which allowed professionals to share knowledge and experiences (2001, p.3).
Dowling and Dolan (2001) undertook secondary analysis of a qualitative study using the social model of disability as an analytical frame. Disability is usually defined too ways, as a medical model where the problem is located in the person and the social model where the problem is located in society i.e. as a social problem. The researchers found that having a disabled child in a family could marginalize the whole family who then suffered from unequal opportunities and outcomes. Through their use of the social model of disability as an analytical framework the researchers found that these families often suffered financial hardship along with stress created by social barriers, prejudice and poor service provision.
Some studies tend to suggest that much of the care that is on offer is discriminatory – that is to say it takes the view that disabled children and their parents have a tendency to be over reliant on services. This article was a summary of the work undertaken in Leicester and it did not therefore, contain the views of parents and their children. Bush (2005) is a senior manager in children’s services and in his summary of what are called ‘inclusive’ services for disabled children he points out that the services are only on offer for a short while so as to discourage over-dependence on the service. This is not to say that some of the tasks undertaken by this partnership group are not beneficial, but there is no guarantee that any of the services would be ongoing.
Fazil et al (2002) focused on the problems faced by members of two specific ethnic groups, the study was included because it was felt that the problems and feelings expressed within the study were quite representative of the feelings and experiences of many parents who have a child or children with disabilities. Although the study was very small, consisting of only twenty people, the use of both qualitative and quantitative data gave the study a breadth that it might not otherwise have had. Certainly the implications of the study were that services are difficult to access and all too often professionals make assumptions about the level of care and support that parents are able to give – these assumptions were also made in relation family support systems that the respondents may have had. The research also found that lack of support and the continuing struggle to access services and make ends meet affected parents’ views of themselves and their abilities to cope.
Bryman (2004) has this to say about the use of both quantitative and qualitative methods
It implies that the results of an investigation employing a method associated with one research strategy are cross-checked against the results of using a method associated with the other research strategy (Bryman, 2004, p.454).
All in all the study was fairly well balanced, and did not for example, appear to exaggerate parent’s fears. The use of data triangulation tends to add weight to the findings of this particular study.
Dowling and Dolan’s (2001) study tends to support the findings of Fazil et al. There appears to be a common feeling that when families have a disabled child or children then they, along with their child, are marginalised. Such marginalisation leads to stress in families and problems in accessing care. In many cases professional assumptions about these families increase the stress involved in obtaining appropriate services and care. This in turn supports the findings of Gregory (1991) that perceptions of disability and the assumption of parental responsibility has a huge impact on family relationships and on respondents’ own views of themselves as parents.
Bush’s (2005) summary of a particular project in Leicester supports the idea that parent’s of disabled children are in some way responsible. The services in Leicester operate to help parents cope with their disabled child in the short term and then the onus is placed back on parents in the long term. The project aims to prevent what it terms as an over dependence on service provision. It seems to be the case that the feelings that the parents of disabled children have expressed in other studies are generated by the kind of services that treat parents as though they are trying to shirk their responsibilities to their children. This was a very short article that briefly described the services on offer, some of which would need to be continued even though they were only provided on a short term basis, for example physiotherapy. As the author of the article states:
Each intervention is administered with the intention of ensuring that the services are short-term and discourage dependency (Bush, 2005, p.128).
This may seem overly critical of the project because until its inception two years ago many of the services that it offers were not available at all in Leicester. The fact that even now they are only available in the short term tends to support the notion that access to services for disabled children is often problematic.
Access and Attitudes in Service Provision
Case (2001) found that parents of children with learning disabilities were often dissatisfied with the professionals with whom they came into contact and when services were provided they tended to be reactive to the problem rather than proactive in solving it. Perceptions of children with disabilities, and particularly learning disabilities are often devalued by society and this devaluation is evident in poor service provision (Chappell, 1997). King et al (1997) maintain that service provision often reflects how children with disabilities are perceived by medical and social work professionals rather than the needs of an individual child. This follows the view among many researchers that the medical model of disability is still at the forefront of most professionals’ minds.
The problem … is that medical people tend to see all difficulties solely from the perspective of proposed treatments for a ‘patient’, without recognising that the individual has to weigh up whether this treatment fits into the overall economy of their life. In the past especially, doctors have been too willing to suggest medical treatment and hospitalisation, even when this would not necessarily improve the quality of life for the person concerned. Indeed, questions about the quality of life have sometimes been portrayed as something of an intrusion upon the purely medical equation. (Brisenden, 1986:176).
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The medical model leads to the treatment people with disabilities as passive objects of medical attention. This view is oppressive of people with disabilities and spreads to other social relationships, it sees disability as pathological i.e. rooted in a person’s biology, and thus unchanging. Contained within this model is the perception of people with disabilities as problematic. As an adjunct to this model, disability has been theorized as a personal tragedy, which means that individuals with a disability are seen as victims.
Treating children with disabilities as victims arguably leads to their becoming almost invisible in service provision. Goble (1999 cited in Case 2001)) maintains that the needs of disabled children and their families are often not addressed because issues that are important to service users, rather than service providers, are not really considered and are under researched. Hornby (1994 cited in Case 2001) has argued that professionals often neglect to provide parents with all the information that they should have when it comes to the needs of their child. If children with disabilities are to get the correct treatment and have access to appropriate services then the parents should be fully informed.
Clearly disabled children’s access to services is hampered by social perceptions and by the perceptions that professionals have. This has resulted not only in problems accessing services, but when services are accessed they are not always appropriate to a particular service user’s needs. Research tends to focus on perceptions of disability and the disadvantage that it brings but as yet there is little evidence of what disabled children and their families actually want from service providers.
Conclusion and Possible Policy Implications
The prevalence of the medical model of health and the ways in which families are kept under-informed regarding the disability of a family member, particularly a child, affects family relationships. It also affects the attitude that professionals may take to disabled children and their families. Gregory (1991) maintains that when a person is diagnosed as ‘disabled’ this affects the ways in which society and the family respond to and deal with that person. Families themselves can tend to see the disabled family member as ‘sick’ and different. Gregory (1991) found that having a disabled family member also affected the way in which mother’s viewed themselves because ideological images of motherhood focus on having an able child. Thus a woman may feel that she is somehow not a mother because of the ways in which society defines motherhood. While doctors may diagnose a physical or learning disability families are often left to cope without either sufficient information or professional help. In a number of cases families have reported that hospitals have refused to admit non-emergency cases unless a parent or carer remains on site to provide additional support (http://www.cafamily.org.uk/rda-uk.html). A shortage of nursing staff and the increasing tendency to perform surgery on a day care basis means that many families are left with extra caring responsibilities once they take the disabled child or adult home. (http://www.cafamily.org.uk/rda-uk.html).
In conclusion it would appear from the literature that service provision is sporadic and often not appropriate to the individual needs of disabled children and their families. It might be recommended that more research is needed into what users actually want from service providers and that perhaps as one study suggested users fare much better if they are assigned a single key worker who will liase with all service providers.
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