10 Children with disabilities
The Children (Scotland) Act 1995 revised the legal framework for assessment and support for children affected by disability, either their own or that of someone in their household or family. Services for children with disabilities had tended to focus on needs related to the disability and were generally provided within the spectrum of community care services for adults. The aim of the legislation was to reorient services for children with disabilities to ensure that they supported children to lead as normal lives as possible, minimising the impact of disability on their welfare and development. Many of the new unitary local authorities realigned their services for children with generic children's services.
Definition of disability
There is more than one definition of disability in statute. The most recent and comprehensive is that in the Disability Discrimination Act 1995 which defines a disabled person as 'a person who has a physical and mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities'. 1 This entails consideration of four elements: (1) is a clinically recognised impairment present? (2) does this have adverse effect on day-to-day functioning? (3) is this effect substantial? and (4) long-term? 2
Guidance on the definition of disability suggests that an impairment must be clinically recognised. An adverse effect on day-to-day functioning requires one or more of the following to be affected: mobility, manual dexterity, physical co-ordination, continence, ability to lift, carry or otherwise move everyday objects, speech, hearing or eyesight, memory or ability to concentrate, learn or understand, perception of the risk of physical danger. The adverse effect must be more than minor or trivial and to be considered long term should have lasted, or be likely to last more than 12 months or be permanent. 3
Local authorities are required to safeguard and promote the welfare of children in need in their area and promote their upbringing by their families by providing a range and level of services appropriate to the children's needs. 4 Children who are disabled, or affected by disability, are included in the statutory definition of children in need. 5 Services for these children must be designed to minimise the adverse effect of disability on the child and enable them to lead, as far as possible, normal lives. 6 Children who are affected adversely by disability should have access to local community-based resources for non disabled children provided by social work, health and education services, as well as specialist services to meet their needs. Wherever possible they should be supported in mainstream nurseries and schools, use generic health services for child surveillance, screening and health promotion and have access to the same range of services as non disabled children. 7 There is a statutory presumption that all children should be educated in mainstream schools unless, in what are presumed to be rare situations, mainstream education would not be suited to the aptitudes and ability of the child, or would be unduly disruptive to the education of other children or would be prohibitively expensive. 8 It these exceptional circumstances arise, before making any alternative arrangements for special education the local authority must take into account the views and wishes of the child and his or her parents. 9
More generally the law requires that disabled people have equal access to goods, facilities and services for the public and provides protection from and financial compensation for less favourable treatment of disabled people in employment and access to services. 10 From October 2004 all providers of goods and services must make reasonable adjustment to their provision to enable equal access by disabled people, including children. 11
Statutory provision for assessment was introduced in 1990, in order to foster a needs led, rather than service allocation, approach to care for older people and other vulnerable care groups. Therefore assessment is a legal as well as professional concept. 12 Local authorities have statutory duties to assess the needs of disabled people for support and services. 13
To ensure that local authorities effectively discharge their general duties towards children affected by disability they are required to assess a child's needs when requested to do so by the child's parent or guardian. 14 The local authority is also required to assess the needs of any person, whether or not they are themselves a child, who provides a substantial amount of care for the child on a regular basis, have regard to results of that assessment and take into account the carer's views when making decisions about what services or support the local authority should provide to meet the child's needs. 15 Where a child or young person is providing regular and substantial care for a disabled adult, such as a parent, they have a legal right to an assessment of their ability to provide, or continue to provide, care and the results of that assessment should be taken into account in deciding what services the disabled adult may need. 16 The local authority is required to inform eligible child or adult carers of disabled children or adults of their entitlement to assessment of their ability to continue providing care. 17
In addition all disabled people, including children, are entitled to assessment of their needs in respect of the following services: 18
- practical assistance in their home (home help); provision or assistance in obtaining recreational facilities
- provision of lectures, games, outings or other recreational facilities outwith the home
- assistance in taking advantage of educational facilities
- transport to and from home in relation to certain services provided by the local authority
- aids and adaptations to the home to improve safety, comfort or convenience
- facilitation of holidays
- provision of meals
- provision of or assistance in obtaining a telephone 19
This assessment of needs for specific services is not equivalent to an assessment of need under children's or community care legislation. Children affected by disability may be subject to a number of statutory assessments and guidance encourages local authorities to carry out these concurrently or combine different agencies' assessments. 20
Local authorities may legitimately take resources into account when after assessing needs they decide what services to provide for an individual, but they may not alter the level of services provided without undertaking a further assessment of the client's needs. 21 They must also consider the client's wishes when deciding what to provide, rather than merely imposing the cheapest option available. 22
Looking after children affected by disability (respite care)
Local authorities provide a range of services for children in need affected by disability including respite services, enabling a child's carers to have a break from caring and to enable the child experience new things. Respite services may include support provided within a child's home, daytime care or leisure activities and occasional overnight stays or regular periods of care with an approved foster carer or in a children's residential unit. The generic duties in respect of looked after children who are disabled described in earlier sections apply, other than with regard to accommodation for the purposes of providing respite care. If a local authority provides a child with respite care which comprises accommodation and care away from his or her home for more than 24 hours in any one period the child is looked after by the local authority for the duration of the placement and the regulations governing such placements apply. 23 Regulations allow a planned respite care arrangement involving a series of placements at the same place to be treated as a single placement for the purposes of compliance with statutory requirements for care planning, review and monitoring the placement. 24 Guidance states that multiple placements treated as a single placement should normally be with the same carer or in the same residential establishment. The length and timing of each placement within a series of placements need not be specified in advance providing for a flexible approach to accommodating the child.
The regulations apply to a planned series of placements in any one year. No single placement within the series should last longer than four weeks and the total duration of the placements should not exceed 120 days. These timescales have the effect of ensuring the flexibility required to plan and provide short breaks when the child and family needs them but are designed to prevent the child spending lengthy periods in local authority accommodation without regular reconsideration of their needs.
In the event that a child remains in a respite placement for longer than four weeks the regulations would apply in full to that and any subsequent placement. Similarly if a child spends more than 120 days in total (the equivalent of four months) in accommodation provided by the local authority, the regulations will be reapplied to that and any other placements. This does not prevent the local authority from providing respite care for longer periods than those specified. The regulations should enforce careful planning and monitoring of how well sometimes lengthy periods of respite are meeting the child's needs.
The requirement for a medical examination before a child is placed away from home applies only at the beginning of a series of short-term placements and there is no need for annual re-examination with each new series of short-term placements. 25
Entitlement to direct payments
Since 1996 local authorities have been empowered to make payments to disabled people to enable them to arrange and purchase for themselves the support and services that the local authority has, following assessment, decided that they need. 26 Entitlement to direct payments was later extended to disabled children and young people enabling disabled 16 and 17 year olds and a disabled parent of, or a disabled person with parental responsibility for, a child in need to receive direct payments to purchase children's services. 27 Direct payments are available to adults and children who suffer from illness or mental disorder or are substantially handicapped by any deformity or disability. 28 The scheme was further extended, with effect from June 2003, to give local authorities a duty, rather than a power, to offer all eligible disabled people aged 16 and over direct payments, instead of arranging services for them. 29 A representative, such as a parent, may consent to, receive and alter direct payments on behalf of an eligible person who does not have capacity to consent to receive direct payments. 30 From April 2005 all community care and children's services client groups will be eligible for direct payments. 31
Disabled young people and the parents of disabled children may use direct payments to purchase respite care. If a parent arranges overnight respite care directly with a provider the child will not be looked after by the local authority. Recipients of direct payments are not required to use regulated or registered services.
Disability discrimination legislation
After a process of incremental implementation, the remaining provisions of legislation prohibiting discrimination against disabled people will come into force in October 2004. The Disability Discrimination Act 1995 applies to discriminatory treatment of disabled people in employment, in the provision of goods and services and the provision of education. Local authorities including social work services are subject to the legislation. The Act identifies two forms of discrimination: (1) less favourable treatment, and (2) failure to make reasonable adjustments to enable access and uptake of appropriate opportunities, facilities and services. Organisations must make reasonable adjustments by changing practices, policies or procedures which may inhibit access by disabled people, by providing enabling auxiliary aids or services, or by providing an alternative acceptable way of accessing services. Discriminatory treatment may be 'justifiable' and therefore not unlawful if the service provider reasonably believes that others might be at risk, the disabled person lacks legal capacity, they would otherwise be unable to provide the service to the public, their failure relates to the provision of the service to the disabled person or to others or there would be greater cost in providing an individualised service to the disabled person. 32
Local authorities and managers of independent, grant-aided and self-governing schools are required to prepare and implement accessibility strategies to improve access to school education for children and young people with disabilities. 33 The strategies should increase disabled pupils capacity to participate in the curriculum, improve access to the physical environment and improve schools' communication with disabled pupils. Employers may be held liable for discriminatory acts of employees unless they took all reasonably practicable steps to prevent discrimination. 34