Differentiated services for disabled children

The Centre for Excellence and Outcomes presents the latest guidance on the importance of ‘differentiated’ services for disabled children

The Centre for Excellence and Outcomes in Children and Young People’s Services (C4EO) identifies and coordinates local, regional and national evidence of “what works” to create a single and comprehensive picture of effective practice in delivering children’s services. One of the eight priority themes for C4EO identified in Every Child Matters is disability.

Disabled children and their families have much in common with other families, but they also have specific needs. Effective services recognise these needs and provide tailored support to meet the requirements of individual families, taking into account any additional difficulties such as poverty.

The term “differentiated” is used to describe flexible services that can be delivered with the individual child and their family in mind, rather than services designed for the convenience of the provider. The term is widely used in education where it applies to learning that is planned for each child by taking into account their particular strengths and abilities.

Research into the delivery of differentiated services shows that many disabled children and their families are still not receiving the services they require in order that they can achieve the best possible outcomes. This article looks at some of the issues faced by these families and the services that support them.

Disabled children with the most complex needs

These children are defined by either the nature of their impairment and corresponding medical support needs or the complexity of the support arrangements they require. Different definitions will result in greatly differing estimates of prevalence. These children are more likely to be placed in residential care, including in healthcare settings, and are more likely to require additional protective and procedural care.

The issues faced by a child with complex needs are experienced by the whole family, which should influence how services are structured and delivered. An effective key worker and case co-ordination system is essential. (The Care Co-ordination Network UK (CCNUK) defines a key worker as someone who is both the source of support for disabled children and their families, and a link by which other services are accessed and used effectively). Research to date suggests that there is no particular profession whose members are best suited to this role, and that factors such as training, supervision and time allocation are more important factors in key workers’ effectiveness.

Disabled children from BME backgrounds

Ethnicity should be considered when thinking about services for children from BME families, but these families’ views of what constitutes good practice is largely similar to that of all parents with disabled children. Some BME communities are disproportionately affected by particular disorders of genetic origin, low birth weight and psychotic disorders compared to the general population, so these factors will need to be taken into account when planning services.

However, for disabled children from some BME communities, poverty and social disadvantage have a much greater impact on outcomes than their ethnic background.

Research into support in these communities suggests the widely-held assumption that families rely on high levels of informal support from relatives are untrue.

Disabled children from refugee and asylum-seeking communities

There is little information available about the prevalence of child disability in refugee and asylum-seeking families. It is quite possible that families do not want to draw attention to their children’s disabilities for fear that applications for UK residency status may be affected. It is likely, therefore, that there is a hidden need for services in these communities.

Disabled children in residential care

Some families are unable to support their children within the family home and they are placed in residential care. The decision to make a placement is frequently not a positive choice, but is made as a result of inadequate local provision. All too often children are placed in residential care a long way from home and, not surprisingly, this has a detrimental effect on outcomes for families. Placement of children under 11 years in residential care is not considered desirable, but it still appears to be common.

Although children in residential care have a wide range of impairments, the “typical” child in a residential school is a boy in his mid-teens with a persistent development disorder, usually autism, and at least one other disability. His behaviour will be challenging to both parents and staff (McGill et al 2006).

Compared with disabled children who live at home, disabled children in residential care:

• Are less likely to have their views explored and respected

• Are more vulnerable to abuse

• Are more isolated

• Are highly vulnerable to a lifetime of care

Planning and assessment on their behalf is also likely to be less conscientious than for children who live at home.

However, it should be noted that many children and parents speak highly of this form of provision. When an away-from-home placement is a positive, informed and valued option chosen from a range of possibilities it can be very successful.

Case study

Early intervention for children with severe speech and language needs

A multi-agency partnership was created between Kent Council and local NHS organisations to support pupils of a local primary school with severe speech, language and communication needs so that they can participate in everyday activities. Commissioners aimed to address concerns about the number of children with such needs requiring placements in specialist units.

The intervention is based on children’s speech and communication support charity, I-CAN’s Early Talk model.

Once a child has been identified as being suitable for the scheme, he or she is offered a place for two terms at a nursery linked to a children’s centre where intensive intervention is offered. Parents receive regular support from a multi-agency team including a speech and language therapist, a learning support assistant, a children’s centre teacher, an early years special educational needs co-ordinator and nursery staff. There is also a dedicated parents’ support group.

After completing the two terms the child returns to their home nursery place and the team continues to offer the child and parents targeted support, including support for transition to reception class and follow-up support in primary school.

A “team around the child” meeting is used to co-ordinate and review the child’s progress, with parents playing a key role. The practice has led to marked improvements in the children’s speech, language and communications skills, meaning that they are able to attend their local primary school and have the confidence to make new friends.

• More about this case study

Practice points

• Many disabled children have similar needs but the way these needs are met may require differentiation

• Specialist skills and knowledge may be required but the capacity for providing a differentiated response should be a feature of all mainstream services

• Service providers should be sensitive to a family’s culture but should not assume this is the main factor to be taken into account when designing how a need is met

• Differentiated services should be flexible and based on an assessment of the whole family

• The design of a differentiated response should include the services provided by all agencies involved with a particular child. An understanding of the importance of differentiated services should be shared by all agencies and their staff

Further reading

This article is based on a research review written by Dr Tony Newman for C4EO “Ensuring all disabled children and young people and their families receive services which are sufficiently differentiated to meet their diverse needs”

RESEARCH

Author: MITCHELL Wendy; SLOPER Patricia

Title: The integrated children’s system and disabled children

Publisher: York: University of York. Social Policy Research Unit, 2008. 4p.

Abstract: The integrated children’s system (ICS) is part of a government programme to re-shape local services for children and families, especially children in need. However, there are many questions surrounding how the ICS will work with and its relevance to different groups of children. This research explores the use of ICS with families of disabled children in four local authorities who were piloting the system.

Author: BENNETT Elaine

Title: What makes my family stronger: a report into what makes families with disabled children stronger: socially, emotionally and practically

Publisher: London: Contact a Family, 2009. 34p.

Abstract: This report presents the results of a survey of the experiences of 615 families with disabled children. It was found that lack of services, attitudes towards disability and lack of support from professionals prevent families of disabled children from living ordinary lives. It calls for more recognition of the contribution of families of disabled children, further investment in services, and campaigns to raise disability awareness in schools.

Author: GRANT Catherine; HAMLYN Becky

Title: Parental experience of services for disabled children: national survey

Publisher: London: Great Britain. Department for Children, Schools and Families, 2009. 93p.

Abstract: Drawing on the findings of a survey, this report gives a profile of disabled children, an overall indicator score for local areas and national benchmark and other scores on information, assessment, feedback, transparency and participation.

Author: COUNCIL FOR DISABLED CHILDREN

Title: The use of eligibility criteria in social care services for disabled children

Publisher: London: Council for Disabled Children, 2009. 3p.

Abstract: The CDC says it has long-standing concerns about the use of eligibility criteria in services for disabled children and their families, some unclear, lacking transparency and leading to unfairness and confusion. This paper discusses the Islington judgment, issues highlighted and the way forward.

This article is published in the 19 November 2009 edition of Community Care under the headline “Differentiated services for disabled children”