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When utilising specific research, it is essential to question who requested and carried out the research and for what purpose? Was the population sample used reflective of the population? And ‘has globalisation fragmented the research?’ (Smith 2004. p30.) Additionally, we should question what research methods were used and why and has the media, experimental bias or political debate influenced the research findings? Without exploring the answers to some of these questions, research may be biased, misleading and have minimal or no validity or reliability. Nevertheless, in an era of professional responsibility, utilising research is necessary to legitimise professional practice, to increase the professionalism of social work and its social position and also to provide accountability, all approaches necessary to be able to continue to provide positive outcomes for children.

‘Mencap’s’ report ‘Breaking Point’ relates to both children and adults with profound and severe learning difficulties including those with complex health needs. As we have previously seen, Hertfordshire’s eligibility criteria to access short breaks services for disabled children is inconsistent and open to professional bias. The ‘Mencap’ report includes adults in its research, whereas this research is exploring children’s services only. Although the remits of both pieces of research isresearch differs, it continues to have validity, since the ‘Mencap’ research still explores respite services and the need for carers to have short breaks.

“Breaking point is a physical and emotional crisis, where the persistent lack of short break services and the endless pressure of providing intensive care finally take their toll. It is a dreadful situation for families, which causes pain and despair and, often, irreparable damage. Caring without a break for children and adults with severe or profound learning disabilities damages these families. Sleep deprivation, moving and handling, and constantly being the only person who can provide what’s needed can be physically and emotionally draining. ‘Sometimes I feel like walking out and not coming back. I feel like I am living in a cage and can’t get out. I look at my life and I don’t have one.” (Breaking Point 2006.)

The report states that; ‘breaking point isn’t inevitable. It can be prevented. It is not caused by caring – it is caused by caring without the right help. With the right kind of short breaks, families will cope and will continue to support and care,’ and recognises that;

“as well as tightening eligibility criteria and cutting short break services, councils are also looking for cheaper, alternative ways to provide support. These include increased use of direct payments, home-based support and link families. At the same time, residential short break centres around the country are facing closure.” (Mencap 2005.)

The Social Care Institute for Excellence (SCIE) carried out research in April 2005 and found that short breaks ‘are an important provision and the use of short breaks is considered as an integral part of the substantial care provided by families.’ Their research confirmed that along with waiting lists for short breaks, families were not getting as many short breaks as they would like nor breaks for as long as they would like. Children with complex health needs, challenging behaviour and disabilities such as autistic spectrum disorders were also less likely to have short breaks.

Additionally the University of York’s paper states that ‘an important part of family support is reducing stress. A break from caring is one of parent’s most frequently reported needs but families also require support that enables them to do activities together as a whole family. Short term breaks are part of this support.’ (Sloper 2006) Short breaks help parents continue to care and are ‘almost universally regarded by parents as a critical service in supporting families within the community.’ (Department of Health. Social Service Inspectorate 1998.) Alongside this publication was the report commissioned by the ‘City of York’s Children’s Trust,’ stating that ‘the majority of disabled children are cared for by their parents, with services being desired to support the family in that role/ Thus, in looking for outcomes of services for disabled children, it is necessary to consider outcomes for both parent and child/ It is recognised in government and in services that more work is needed on the ways in which these outcomes (from Every Child Matters) are interpreted for disabled children and questions such as how do we view being healthy for a child that with a degenerative condition must be addressed.’ (Beresford, Clarke and Sloper 2006.)

Furthermore, the University of York’s recent paper, ‘Priorities and Perceptions of Disabled Children and Young People and their Parents Regarding Outcomes from Support Services’ states that disabled children want to achieve similar outcomes as there non disabled peers, such as being healthy, staying safe and having friends. However, being able to ‘communicate and be understood was fundamental to well being and making progress.’ (Beresford 2007.) A few outcomes that parents have prioritised are to maintain their own identity beyond being a parent of a disabled child, to spend quality time with their child that did not involve caring responsibilities and to be healthy and not stressed. They concluded that whilst disabled children aspire to the same outcomes as their non-disabled peers, the meaning of and the level achievement expected differed from ‘normative developmental indicator.’ (Beresford 2007.) The research stated that changes in the condition or impairment impact on this and that outcomes have a hierarchical structure and that only when lower outcomes are reached can higher ones be achieved. Communication was central to all outcomes being reached with achievement often being reliant on additional support. The research also highlights the need to support parents of disabled children and for their own well being to be promoted.

Children’s charities such as ‘The Council for Disabled Children, National Children’s Bureau, Barnardos and Shared Care Network’ have a variety of publications, journals, pamphlets, reports, books and Internet sites that share literature on respite services for disabled children. The ‘Shared Care Network’ book ‘All Kinds of Short Breaks’ explores different aspects of family based short breaks for disabled children in great depth and ‘provides factual and accessible material and examples of good practice, which reflect the diverse services that short breaks schemes provide.’ (Carlin 2004.) Their book, ‘Better for the Break’ explores a range of short breaks services for children on the autistic spectrum to investigate whether short breaks services benefit children and young people with autistic spectrum disorder. They reported that parents felt services did not have an understanding of the specific needs of their children such as the need to have 1:1 support and were ‘concerned about the impact of their child’s unusual or more challenging behaviour on other children and staff that do not understand ASD.’ (Tarleton et al 2002.)

In the Shared Care’s Network report on ‘Too Disabled for Care,’ it highlights that ‘21% of disabled children on waiting lists have complex healthcare needs and that short breaks’ services are struggling to place children with complex healthcare needs, mainly due to a lack of adapted housing, training and moving and handling issues.’ (2003.) Additionally, the Shared Cares Network’s 4th national survey highlighted that the changing and increased needs of disabled children were causing changes and diversity in family based short breaks service delivery. The study suggested that some ongoing challenges facing short breaks services were ‘reducing waiting lists and unmet need and the continual need to recruit new carers.’ (Cramer et al 2007.)

The Barnardos report ‘Meeting Family Needs’ reported on ‘innovative services to meet needs can be cited, but less common are detailed descriptions of services and evaluation of their effects on recipients. More involvement of parents and children is needed at an early stage of service’s aim and objective formulation, thereby ensuring that outcomes are based on their priorities and relevant to their lives.’ (Barnardos 2002.) Although this research is not occurring in the early stages of service delivery, the fact that it is occurring is a positive one.

Regarding participation, University of York’s recent paper, ‘Participation of Disabled Children and Young People in Decision Making Relating to Social Care’ stated that although participation is a key to policy and that in general, children’s participation is increasing, disabled children are still less likely to participate in decision making and that those with complex disabilities or communication difficulties continue to be excluded. They found that ‘participation at any level is only happening for a small number of disabled children, that are most able to communicate, most articulate and confident.’ (Franklin & Sloper 2006.)

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