Families with disabled children

The profile of disabled children in the United Kingdom is changing. More disabled children and young people live in the UK than ever before (about 770 000 according to criteria defined in the Disability Discrimination Act), and the number of children with the most severe or complex needs—such as those with autistic spectrum conditions or with complex health and nursing needs—is also increasing. The needs of families with a disabled child, which involve input from professionals working in many different agencies, are often unmet. This situation will continue unless efforts are made within the opportunities provided by new child and health service policies and structures (such as the Common Assessment Framework for Children and Young People; www.everychildmatters.gov.uk/deliveringservices/caf/) to give families better support.

Around 55% of families of disabled children live in poverty; they have been described as “the poorest of the poor.”¹ It is within these constrained financial circumstances that families have to meet costs associated with bringing up a disabled child, which are estimated to be three times those of bringing up a non-disabled child.² Unlike in other families, paid work is not the potential solution. The child's care needs, multiple appointments with healthcare professionals, and lack of child care affect parents' ability to work. Mothers with disabled children are much less likely to have paid employment than other mothers.³ This means that many families are, to a greater or lesser extent, reliant on benefits. Indeed, state benefits are the sole source of income for 90% of lone parent families with a disabled child.³ Current disability benefits do not meet the additional outgoings associated with having a disabled child.² In addition, it is the most disadvantaged families (including those from some minority ethnic groups) who are least likely to apply for the main disability benefit for families with a disabled child (disability living allowance).⁴,⁵ Such families are also less successful when they do apply.⁴

Parents with disabled children have higher levels of stress and lower levels of wellbeing than parents with non-disabled children. Factors influencing levels of stress include the child's sleep and behaviour problems, families' material resources, parents' employment situation, social support, unmet service needs, and parents' coping strategies.⁶ Some interventions have improved children's sleep and behaviour problems and parental stress.^7-9 However, many parents report that they want but do not receive help in these areas.

Living in suitable housing and having appropriate equipment to assist with activities of daily living are also key factors promoting families' wellbeing. Yet most families report problems with their housing¹⁰ and unmet needs for equipment.¹¹

Disabled children and their families often lack suitable local leisure facilities and accessible transport, and they often face hostile attitudes of staff and members of the public.¹² These factors prevent them from taking part in activities as a whole family.

Parents frequently report the need for a break from caring. Such a break can provide time for themselves and their partners, and time to spend with their other children. Services that provide short term breaks can reduce mothers' stress, but many families have problems obtaining appropriate services.¹³ Children for whom provision is most inadequate include those with complex health needs or with challenging behaviour or autistic spectrum disorders and children from minority ethnic families.

How can primary care trusts respond to these issues? Studies of key worker services have consistently shown positive effects on unmet needs and family well-being.¹⁴ Key workers are part of the solution to ensuring a more holistic assessment of families' social and economic needs. However, key workers cannot provide access to resources that do not exist in their local area. Thus primary care trusts can have several roles. They can ensure that workers are aware of the needs of disabled children and their families. They can make sure that families are offered a key worker, that families' needs are assessed (by asking questions about the child's sleep patterns, housing problems, and parents' levels of stress, for example), and that appropriate interventions are available in their local area.

Primary care trusts can also promote strong multiagency working and commissioning of services for disabled children. They can also ensure that the needs of disabled children and their families are central to the agendas of children's trusts and that housing and leisure agencies are included in plans to meet these needs.