Proven Practice: short-breaks for disabled children

The Social Care Institute for Excellence outlines research findings on respite care for the carers of disabled children

For many parents of disabled children the traditional residential break model, which places their child in a residential unit, does not always serve the needs of their family. Instead, parents may prefer a more flexible model that provides additional care to the child or the family as a whole at external residential centres, in the home or at external facilities, for short amounts of time.

This approach takes into account two issues integral to the care experience of disabled children and their families. First, the desire of disabled children to lead as ordinary a life as possible, including taking breaks with their family and friends close by. Second, it reflects the needs of their parents, who often want the break to provide a breather but also want flexible help that enables them to have a normal relationship with their disabled child.

Changes to commissioning

In recent years the expectations of parents have changed. Parents today feel more confident demanding stimulating and rewarding care for their children. And more awareness of their rights as consumers of services means they will ask for what they want rather than accepting what they are offered.

At the same time new commissioning arrangements allow greater flexibility in service provision. Most services on offer were inspired by parental requests. In the future it is expected that commissioners will be even more willing to develop services that respond innovatively to their needs.

Innovative approaches

The model for providing short breaks was traditionally residential care solely for the disabled child. This could be disruptive to family life, so new approaches involve the whole family. The time spent using these services can range from a couple of hours to several days. The flexibility of the model allows the family to stay with the child, take the break at home or in the wider community. Examples include:

● Under-fives schemes.

● Saturday play schemes.

● Summer holiday play schemes (including children with complex health needs).

● Youth clubs.

● Transitions holiday clubs (for young people entering adulthood).

● Home-based care.

● Whole-family residential units.

Benefits of the short-break model

Flexible and responsive

Because different types of provision are offered at a range of times and locations, the service can be shaped to suit the needs of the whole family. There is also greater scope to provide support to siblings, who can be excluded from the traditional model.

Home and community-based

Parents and families tend to prefer home-based services because they support continuity of care. When care takes place outside but near to the home, disabled children are still recognisably part of the local community and feel more like they are leading ordinary lives.

Stimulating and fun experiences

Providing stimulating and enjoyable activities ensures parents and children enjoy the break. When parents are certain their child are having fun they find it easier to relax and gain the benefit from the service.

Shaped by the needs of the family

Developing care plans and activities with the input of the family helps to shape the service provision to their actual needs. Determining how each disabled child wants to spend time and who they want to spend time with, be they parents, siblings or friends, ensures they gain the greatest benefit from the break.

Supporting parents

The short-break approach recognises that parents often find it difficult to leave their child and staff have to provide ­reassurance and encouragement for them to go and enjoy themselves. The opportunity to talk with specialist practitioners can also help parents develop the level of care they provide at home and build their confidence.

Distinct from health care

These services do not feel like hospital visits. Even when specialist nursing care is necessary, steps are taken to limit the impression of being in a medical facility. The creation of new posts and the focus on creating a sense of “normality” reduces the sense of being hospitalised.

Cost

Although home-based care is expensive, partly due to the unsociable hours, it is often cheaper than the residential alternative. There are also staffing options, such as up-skilling nursery nurses to administer home-based care which limit the financial impact of this model.

Future developments

Service providers are keen to extend short-break services. Potential areas of development include:

● Nursing care for families on holiday to enable families to take extended breaks.

● Increasing funding flexibility to enable free care at times other than crisis points.

● Funding to support joint activities for disabled children and their siblings.

● Homework clubs for the siblings of disabled children.

● Under-fives groups for children with complex health needs.

Practice points

1. Short breaks provide a range of types of support to disabled children and their families.

2. Short break services help disabled children to lead ‘ordinary’ lives. They enable them to take breaks with their family and friends in their home or the community.

3. Parents often require practical help and an opportunity to take a break from the role or carer or nurse. Short breaks can help them develop new skills and build their confidence as a carer.

4. The flexibility of these services means the benefits of the break are shared among the whole family. This can be particularly valuable for siblings, who may miss out on support with the traditional model.

5. Providing breaks that disabled children enjoy and find stimulating helps parents to feel comfortable and enjoy the experience.

6. Reducing the impression of medical involvement in the break increases the value children get from it.

7. The types of service offered vary but with increasing funding flexibility it is expected that the number and range of innovative short breaks will increase.

Further information

SCIE Resource guide 14: Having a break: good practice in short breaks for families with children who have complex health needs and disabilities

SCIE Knowledge review 18: ‘Necessary stuff’ – The social care needs of children with complex health care needs and their families

Aiming High for Disabled Children (AHDC)

Every Disabled Child Matters

Centre for Excellence and Outcomes in Children and Young People’s Services

Research abstracts:

Author: HARRIS Helen

Title: Meeting the needs of disabled children and their families: some messages from the literature.

Reference: Child Care in Practice, 14(4), October 2008, pp.355-369.

Abstract: The present review summarises literature on the needs of disabled children and their families and draws on research identifying promising service provision. The review took 1997 as its starting point to build on two thorough reviews that were written prior to that time. The findings of the current review largely echo earlier work in terms of what is known about the needs of disabled children and their families, but trends in service provision have altered somewhat, primarily through the use of inclusive services and short-break care. Evaluations of services remain over-dependent on user opinion studies, but studies that use basic evaluation or propose theory-based principles for developing effective services are identified.


Author: PRABHAKAR Meera et al.

Title: Individual budgets for families with disabled children: scoping study: final case study report

Publisher: London: Great Britain. Department for Children, Schools and Families, 2008. 67p.

Abstract: Aiming High for Disabled Children (AHDC) commits DCSF / Department of Health to pilot and evaluate individual budgets for families with disabled children in the current Comprehensive Spending Review period (April 2008 – March 2011). Because of the high level of pilot work already underway in this area, a scoping study was commissioned to inform the design of disabled children pilots. A multi-method, iterative approach was adopted to ensure comprehensive understanding of existing evidence on the effectiveness of Individual Budgets (IBs). This approach included a review of literature and consultation with a range of stakeholders (including other Government Departments), local authorities and families with disabled children. The evidence was used to answer questions in the analytical framework developed for the study. This Case Study Report accompanies the main report


Series: (Research Report no. DCSF-RW066)

Author: CRAMER Helen CARLIN Jeanne

Title: Family-based short breaks ( respite) for disabled children: results from the Fourth National Survey.

Reference: British Journal of Social Work, 38(6), September 2008, pp.1060-1075.

Abstract: A survey of family-based short breaks for disabled children in the UK was undertaken in order to investigate the state of current services. The research builds on the work of previous surveys and takes the perspective of the service co-ordinators. The findings show that family-based short breaks are rapidly changing and diversifying. The number of schemes with contract carers has gone up and the number of schemes with additional sitting and befriending services has gone down. The reasons for the growth in contract carers are understood better than the reasons for the decline in sitting and befriending. The changing population of disabled children and the increased number of children with complex needs wanting a service are key contributory factors in these trends. The most common profile of children waiting the longest for a service is still teenage boys with autism or ‘challenging behaviour’. Some improvements have been observable in the numbers of families and children from ethnic minorities accessing services. The introduction of Care Standards has received a mixed response. The challenge for short breaks is to be flexible and responsive to the local needs of children and families.


Author: JARVIS Alison

Title: Disabled children and housing needs.

Reference: Housing Care and Support, 11(2), August 2008, pp.9-12.

Abstract: This article outlines the housing situation facing families with disabled children, and particularly draws attention to the additional disadvantage experienced by families with disabled children from black and minority ethnic groups. It is a summary of a workshop presented by the author to the Race Equality Foundation conference in November 2007 on the theme of extending choice and participation for black and minority ethnic communities.


Author: MOONEY Ann OWEN Charlie STATHAM June

Title: Disabled children: numbers, characteristics and local service provision

Publisher: London: Great Britain. Department for Children, Schools and Families, 2008. 101p., bibliog.

Abstract: The purpose of the research was to collect data at national and local level on the numbers and characteristics of disabled children and the availability of local service provision for them, so as to reduce the lack of information in these areas. A questionnaire survey of all Directors of Childrens Services was undertaken.


Series: (Research report no. DCSF-RR042)

Title: Transition pathways for young people with complex disabilities: exploring the economic consequences.

Reference: Child: Care Health and Development, 34(4), July 2008, pp.512-520.

Abstract: Disabled young people with complex needs face particular challenges when they reach adulthood and seek to move from school to employment or further education. There are potentially substantial personal and social costs arising from these challenges. The authors sought evidence from recent UK research, policy and related literatures undertook exploratory statistical analyses of birth cohort data and analysed information provided by 30 disabled young people requiring high levels of practical and communication support. The personal, family and social costs that result from unsuccessful transition are substantial and wide-ranging. Health service and local authority expenditure are important elements, but do not allow young people to achieve the educational or employment goals to which they aspire, resulting in considerable costs for the state, whether through missing opportunities to contribute to the economy or through dependence on welfare benefits. The considerable sums currently spent on disabled children and young people are clearly not enough, or not deployed appropriately, to enable those who reach adulthood to fulfil their ambitions, or to meet government policy intentions for young people to achieve economic well-being.


Author: EVERY DISABLED CHILD MATTERS

Title: Disabled children and housing

Publisher: London: Every Disabled Child Matters, 2008. 16p.

Abstract: EDCM’s – Every Disabled Child Matters- new campaign briefing Disabled Children and Housing that says families with disabled children may be the worst housed families in Britain. It highlights that fewer than half of disabled children live in housing suitable to their needs – a lower proportion than for any other age group of disabled people EDCM is calling on all levels of government and social housing providers to prioritise the housing needs of families with disabled children and is urging EDCM supporters to take action by emailing their MP asking them to help end the crisis.

Some improvements have been observed in the number of families and children from ethnic minorities accessing services.


Author JARVIS Alison

Title Disabled children and housing needs

Reference Housing Care and Support, 11(2), August 2008, pp9-12

Abstract This article outlines the housing situation facing families with disabled children, and particularly draws attention to the additional disadvantage experienced by families with disabled children from ethnic minority groups. It is a summary of a workshop presented by the author to the Race Equality Foundation conference in November 2007 on the theme of extending choice and participation for ethnic minority communities.


Author MOONEY Ann, OWEN Charlie, STATHAM June

Title Disabled children: numbers, characteristics and local service provision

Publisher Department for Children, Schools and Families, 2008. 101p, bibliog

Abstract The purpose of the research was to collect data at national and local level on the numbers and characteristics of disabled children and the availability of local service provision for them, so as to reduce the lack of information in these areas. A questionnaire survey of all directors of childrens services was undertaken.


Series: (Research report no. DCSF-RR042)

Title: Transition pathways for young people with complex disabilities: exploring the economic consequences.

Reference: Child: Care Health and Development, 34(4), July 2008, pp.512-520.

Abstract: Disabled young people with complex needs face particular challenges when they reach adulthood and seek to move from school to employment or further education. There are potentially substantial personal and social costs arising from these challenges. The authors sought evidence from recent UK research, policy and related literatures undertook exploratory statistical analyses of birth cohort data and analysed information provided by 30 disabled young people requiring high levels of practical and communication support. The personal, family and social costs that result from unsuccessful transition are substantial and wide-ranging. Health service and local authority expenditure are important elements, but do not allow young people to achieve the educational or employment goals to which they aspire, resulting in considerable costs for the state, whether through missing opportunities to contribute to the economy or through dependence on welfare benefits. The considerable sums currently spent on disabled children and young people are clearly not enough, or not deployed appropriately, to enable those who reach adulthood to fulfil their ambitions, or to meet government policy intentions for young people to achieve economic well-being.


Author: EVERY DISABLED CHILD MATTERS

Title: Disabled children and housing

Publisher: London: Every Disabled Child Matters, 2008. 16p.

Abstract: EDCM’s – Every Disabled Child Matters- new campaign briefing Disabled Children and Housing that says families with disabled children may be the worst housed families in Britain. It highlights that fewer than half of disabled children live in housing suitable to their needs – a lower proportion than for any other age group of disabled people EDCM is calling on all levels of government and social housing providers to prioritise the housing needs of families with disabled children and is urging EDCM supporters to take action by emailing their MP asking them to help end the crisis.

 

This material published in Community Care magazine 8 January 2009 under the heading Short Breaks for Disabled Children

Comments are closed.