Disability and Handicap in Childhood

In the UK, an estimated 1 in 20 children aged under 16 years are reported to be disabled (as defined by the provisions of the Disability Discrimination Act).¹ Although useful comparable figures are hard to come by, it appears that the incidence of disability among children and adolescents has risen significantly over the past thirty years, with an increased number of children with complex needs.² This rise is, at least partly, due to medical and social advances enabling severely disabled infants to survive, as well as prolonging their life expectancy. There has also been an increase in diagnosis rates for most of the conditions that cause childhood disability. For example, autistic spectrum disorders (ASD) are now much more widely recognised and diagnosed than they were thirty years ago, although it seems likely that their overall prevalence has not really changed.³ There is also likely to have been an increase in the reporting of disability through enhanced knowledge among the general population, medical, teaching and social care professions.

There are a wide range of definitions used, depending upon the interest and purpose to which they are put. The ones given below are intended as a guide to current concepts in this area.

Disability

The Department of Health defines disability as the disadvantage experienced by an individual as a result of barriers (e.g. attitudinal, physical, social) that impact on people with impairments and/or ill health.

Special educational needs

This term was first coined in 1981 and includes children with learning difficulties, which may be the result of a physical or sensory disability, an emotional/behavioural problem or developmental delay.

Learning disability⁴

• Formerly termed mental handicap or mental retardation.
• A child with general learning disability finds it more difficult to learn, understand and do things compared to other children of the same age. The degree of disability can vary greatly.
• A child with specific learning disability finds one particular thing hard, but manages well in everything else, e.g. difficulty in reading.

Handicap

A physical, mental or emotional condition that interferes with a person's normal functioning.

According to the Office of National Statistics, 19% of boys and 17% of girls aged less than 20 years were reported to have a mild disability (2000).² Severe disability rates (higher among boys) for children aged less than 17 years of age (2000) were 11 per 10,000 of male population and 5 per 10,000 of the female population; the predominant disability among severely disabled children and adolescents were autistic spectrum disorders and behavioural disorders.²

Types of condition causing long-standing illness or disability among under-20-year olds in the UK:²

• Asthma - 42%
• Mental disorders - 4%
• Learning difficulties - 2%
• Nervous system disorders - 4%
• Blindness/vision defects - 4%
• Deafness/Ear defects - 6%
• Heart disease - 3%
• Lung/respiratory disease - 6%
• Digestive disorders - 4%
• Urogenital disorders - 3%
• Musculoskeletal problems - 5%
• Skin conditions - 8%
• Physical handicap - 0% (although recorded at 6% in 1998, indicating a change in recording/reporting of some type)

Percentages are total of all impairments (where more than one present, only main illness or disability is recorded), data for year 2000.

Causes

• Genetic factors
• Infection prior to birth
• Brain injury at birth
• Brain infection or brain damage after birth
• Unknown

Examples

• Down's Syndrome
• Fragile X syndrome
• Cerebral palsy

Effects/issues

• Speech problems
• Communication problems
• Behavioural problems
• Sibling jealousy/embarrassment/bullying
• Increased risk of mental health problems
• Schooling problems; mainstream or special school considerations

Cerebral palsy (CP) is the most common physical disability in childhood.⁵ Approximately 2 per 1000 infants in developed countries are born with the condition.⁵ CP provides an umbrella term for a broad group of non-progressive motor impairment conditions secondary to lesions or anomalies of the brain arising in the early stages of development.⁵ Adaptive equipment such as powered mobility and the introduction of augmentative communication systems such as sign language and picture boards can have impressive and widespread impacts on social, language and play skills as well as encouraging independent movement.⁵

• The development of the disabled child and future life chances, including those of siblings, are critically affected by the support and services received by the disabled child and their families during the early years following diagnosis.
• Disabled children are more likely to live in poverty than non-disabled children.
• Moreover, poverty increases the risk of a child having an impairment, e.g. increased risk of low-birth-weight babies among low-income families; parents may find it more difficult to maintain full-time employment; housing can be inadequate for the child's needs; and expenditure on child's basic needs is increased.
• Families with disabled children may also experience negative attitudes from others, leading to social exclusion of the whole family, including siblings.
• A report issued by the Prime Minister's Strategy Unit suggests ways of improving the life chances of disabled people, viz:⁶
  • Disabled children and their families should receive specialist equipment in a timely fashion when it is required.
  • Families of disabled children should receive adequate childcare provision that is sustainable, high-quality, flexible, affordable and accessible.
  • Key-workers should be in place to provide continuous support, provide necessary information, improve communication and co-ordinate multi-agency interventions.