Services for Disabled Children

Disabled children present a range of complex and potentially expensive challenges to children's services. There is evidence to suggest that whilst the overall numbers of disabled children may not be increasing, many are growing up with more significant needs than in the past. Conditions such as autism appear to be increasing and advances in medical interventions mean that some children survive pre-birth and birth trauma who might previously have died. There are also increasing numbers of disabled children from some minority ethnic communities whose cultural as well as social, educational and health needs will require both short-term and long-term planning.
Services that encourage dependency rather than independence tend to be high cost as well as having very long-term financial and social welfare implications.

This component considers:

Who are disabled children? - coming to an agreed definition
Early intervention
Family support
Flexible respite
Multi-disciplinary assessments
Joint strategic planning
Developing local provision
Transition planning
Charging

Who are disabled children?

• The key agencies in providing early services to disabled children are likely to use different definitions. This can hamper joint working and restrict joint funding opportunities and is likely to have long-term financial implications.
  
• To provide cost effective services both in the short-term as well as the long-term, the broadest definitions of disabled children are most helpful.
  
• A well developed definition should include:
  • Children with a physical or sensory impairment who, without assistance, would be unlikely to achieve their full potential
    
  • Children with a learning disability, who again would not achieve their full potential without assistance from agencies outside the family
    
  • Children with emotional, behavioural or mental health problems.
• Failure jointly to identify children early who have emotional, behavioural or mental health problems, in particular, may lead to such children experiencing expensive residential school or residential home placements as adolescents and prison, hospital, residential or nursing home as adults16

Early intervention

• All children will have access to health assessments in their early years. Health assessments need to include early identification of behavioural difficulties and need to be shared with education and social services 17

Family support should:

• Focus on enabling children and families to develop their own solutions.
  • For children with a physical or sensory impairment, this may include supporting parents to enable children to take risks. Contact with organisations of disabled people can assist this.
  • For children with learning disabilities, emotional, behavioural or mental health problems, Early Bird and Portage schemes are cost effective. See Good Practice: Bristol.
• Promote the child's independence, particularly to support children to access mainstream, universal services.
  • Early Years' strategies should ensure that disabled children are supported to access mainstream play schemes and nurseries. Special provision should be the exception, rather than the rule. See Good Practice: Bristol.
  • Consider housing needs both in the short and long term. Adapting existing housing and supplying appropriate equipment can reduce demand for residential care. This needs to be prompt and responsive to children's changing needs.
  • It is equally important to consider that long-term accommodation needs to create housing for life as disabled children reach adulthood. A well developed register of disabled children can assist in this. This again will reduce demand for expensive residential placements for adults.
    
• Provide a range of services that offer real support to enable children to remain with their families including short breaks that are flexible. This includes good information and access to support groups. The Department of Health has provided a guidance booklet.18See Good Practice: Dudley (2).
• Provide services that can be accessed quickly at times of family crisis. See Good Practice: Dudley (3).
• Ensure that mainstream schools are able to accommodate children with physical and sensory impairments and mild to moderate learning disabilities. This can include a number of school based schemes that support all disabled children to access and remain in mainstream schools and achieve their potential. See Good Practice Bristol.
• Improve access to community facilities including leisure facilities for disabled children.
• Ensure that Connexions has support for all disabled children as a key target and that disabled people are recruited as personal advisors.
• Ensure that disabled children have contact with other disabled children and adults and have good access to advocacy.
• Promote Direct Payments for Disabled Children.
• Ensure separate assessments of parents and carers of disabled children. Their aspirations and concerns may be quite different from their child's and they may need support in their own right.

• See also the Family Support component of this module.
  

Flexible respite

• Respite needs to provide a positive experience for the child. It should be available at times that meet the child's and the family's need. It needs to work alongside school and out-of-school activities. See Good Practice: Bristol, Good Practice: Derby.
• Community based respite schemes can be more cost effective than residential respite.
• Children and families should have a choice of respite in their own home or elsewhere. Respite in the child's own home can be both cheaper and more positive for the child and family. See Good Practice: Bristol.
• Peak times for family stress tend to be evenings, weekends and holidays. Clubs and activity based schemes using local resources are more cost-effective than residential based schemes. See Good Practice: Derby.
• Overnight and longer periods of respite should be family based where possible. Where children access residential or family based respite, they should continue to have access to any community based activities to provide continuity.
• Residential respite will be necessary for some children. This also needs to be flexible and is best jointly provided by health, education and social services and/or the independent sector, to meet the needs of children with high levels of health and social care needs. Such provision needs to be able to meet the demand for both rolling respite and emergency respite. See Good Practice: Slough,and Good Practice: Leeds. To make the best use of resources, respite provision can be jointly commissioned. See Commissioning module
• Flexible transport arrangements will be necessary to maximise the effectiveness of family support and respite options. See the Audit Commission's report on this topic.19
  

Multi-disciplinary assessments

• Services provided to disabled children very often depend on which agency first comes into contact with the child or first acknowledges the disability.
  • Children identified by health services may or may not be referred to social services or education services. Some children with behavioural difficulties may receive a purely medical intervention, such as referral to Child and Adolescent Psychiatry or a drug-based treatment.
  • Similarly, children identified by education or social services may have only single service options.
  • One-dimensional approaches are not cost effective, nor are they likely to offer long-term solutions to the problems experienced by disabled children as they move into adulthood.
• Many disabled children need access to multi-disciplinary assessments throughout their lives. A child with physical health needs is unlikely to achieve their full potential without assistance accessing education and social activity. Equally, a child struggling educationally or socially may well experience mental health or other health conditions.20 See also Assessment.
  
• Multi-disciplinary assessments allow early interventions to address the full range of a child's needs and are therefore likely to prove cost-effective in the long-term. An increasing number of councils have co-located or jointly managed assessment teams. See Good Practice: Dudley (2).
  

Joint strategic planning

To maximise the effective use of resources and enable children to achieve their potential level of independence and thus reduce the need for expensive adult placements, services need to be jointly planned and commissioned. This will require a thorough needs assessment and trend analysis.

Most disabled children who live away from home go to residential school and are not children looked after. Research findings21 suggest that councils should review their practice locally. Findings indicate that:

• The likelihood of a disabled child being sent to residential school varies greatly throughout the country.
• Inability to meet a child's educational needs locally and pressure on families were the two main reasons given for a disabled child going to a residential school.
• Whilst the joint funding of placements between education and social services departments has become more common, there are wide variations between authorities in the proportion of placements that are jointly funded. There remain relatively few councils where health is a full partner to joint funding arrangements.
• Placements funded solely by the education department tend to have little involvement from social services departments, leading to some difficulties for children returning to families at the end of full-time schooling. This can have significant resource implications for adult services if families and or young people have expectations of full-time support post the age of 19.
• Where responsibility for meeting the educational needs of a child are not a high priority for local services, children looked after may also be placed in residential homes at some distance to the Authority.
• Some children with high physical health needs may be in hospital or health settings with limited access to education or social activities.
• There is evidence to suggest that there are increasing numbers of disabled children from some minority ethnic communities whose cultural as well as social, educational and health needs will require both short and long-term joint planning.
• A well developed register of disabled children can become an excellent joint planning and commissioning tool.

Developing local provision

• Specialist external residential placements are often costly. A commissioning approach is essential and for the smaller specialist services, there may be considerable advantages to joint commissioning with neighbouring councils. It is more cost-effective, as well as being preferable for children and their families, if these services are provided locally. This reduces visiting time for families and professionals and ensures that local services are better placed to ensure that health, education and social care needs are met. See Costing Children's Placements.
• Housing and leisure services will be key partners in developing local provision. The independent sector may also have access to funding streams and expertise not otherwise available locally. See Good Practice: Slough
  

Transition planning

Many disabled children will continue to have a range of support needs into adulthood. Interventions in their childhood should have focused on maximising independence, but the transition planning stage provides a further opportunity to ensure that the move to adults' services is successful.

• Transition planning is often an area of weakness at present, either because it starts too late or because there are difficulties co-ordinating children's and adults' services. Funding responsibilities can also be an area of contention if the protocols within and between agencies are unclear.
  
• There should be no automatic assumption that children attending special schools will move into adult day centres.
  
• Housing, training and employment options should be fully explored and mainstream provision promoted for all young people, wherever possible. See Good Practice: Hull (5)
  
• Children's own aspirations need to be considered even if these are different from their parents or carers. Advocacy for children in transition is crucial.
  
• Direct Payments are also cost effective where this enables young people to access mainstream provision and reduces demand for adult day care provision. See Direct Payments.
  

Charging

• Charging for all children's services needs to be considered in the light of the recent Government guidance on Fairer Charging22. This needs to be linked with a full welfare benefits assessment to maximise income for families and service providers.

16The Quality Protects Website has a summary and links to information about children with disabilities at http://www.doh.gov.uk/qualityprotects/work_pro/protect_6.htm
A summary of Deaf Children: positive standards in social services is available at http://www.doh.gov.uk/qualityprotects/work_pro/deafsum.pdf
the Council for Disabled Children summarised good practice in Quality Protects MAP4 available at http://www.doh.gov.uk/qualityprotects/work_pro/maps4dis.doc
analysis of children with disabilitie form the children in need census is available at http://www.doh.gov.uk/public/cinresults.htm
Young Minds has information about children's and young people's mental health at http://www.youngminds.org.uk
17Quality Protects Research briefing on the needs of children with disabilities available at http://www.rip.org.uk/mainmenu.html
18 A Practical Guide for Disabled People or Carers Part 3 Help with particular needs: For disabled children http://www.doh.gov.uk/disabledguide/disabledchildren.htm
19Audit Commission, Going Places Taking People to and from Education, Social Services and Health Care http://www.audit-commission.gov.uk/reports/AC-REPORT.asp?CatID=&ProdID=F624E5F1-A7E4-419a-94BA-7DF2FC096CE2
20The Quality Protects Website has a paper about multi agency assessment and services 'Think Multi-Agency' at http://www.doh.gov.uk/qualityprotects/info/publications/index.htm
21Norah Fry Research centre Disabled Children and Residential Schools: A study of local authority policy and practice (April 2000) ISBN 1 874291 66 7 by David Abbott Jenny Morris and Linda Ward details at http://www.bris.ac.uk/Depts/NorahFry/pubns.htm#child
22Fair Access To Care Services Guidance on Eligibility Criteria for Adult Social Care in England can be viewed at http://www.doh.gov.uk/scg/facs/index.htm
The guidance for Wales can be viewed at www.wales.gov.uk/subisocialpolicy/topics-e.htm#fair