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This article will give you an overview of some of the issues relating to the child with a disability. It is a broad topic - follow links for more details on individual topics. However, before addressing these issues, it is important to establish the meaning of certain terms:
- Impairment - this is a loss or abnormality of physiology or of an anatomical structure. This can be likened, in the medical model, to aetiology, eg long eyeball.
- Disability - this is a restriction or loss of ability due to an impairment in performing an activity in a manner or range considered normal for a human being of that developmental stage. In the medical model, this would be the pathology, eg myopia.
- Handicap - this is the disadvantage for an individual, arising from a disability, that limits or prevents the achievement of desired goals (an uncompensated disability). This can be likened to the clinical presentation, eg poor visual acuity. Note that the handicap may be a relative thing, arising from barriers (eg attitudinal, physical, social) that impact on people with impairments and/or ill health. So, using our example, the handicap of poor sight can be overcome with glasses.
- Learning disability - this was formerly termed mental handicap or mental retardation. It can be divided into two groups:
- 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, eg difficulty in reading.
- Special educational need - 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. Special provision is what an education authority provides to meet special needs.
When considering developmental delay and possible disability in the child, it is worth remembering that development does not progress in a linear fashion but in uneven steps. Each stage will open up possibilities for other developmental 'streams' (so if gross motor was a little slow, it may have been hiding a more advanced fine motor development). These 'streams' - although all interlinked - run at different rates and, in the otherwise normal child, it is helpful to remind yourself and parents of this fact once other more worrying conditions have been excluded.
Furthermore, the general health of the child contributes to the overall development. So repeated absences from school due to chest infections for a cystic fibrosis child, for example, will need to be considered when considering his or her apparent delay in reading.
Finally, don't forget the bigger family picture: a slow walker is less worrisome in a family of slow walkers.
Child disability is an emerging global health priority. To address the need for internationally comparable information about the frequency and situation of children with disabilities, UNICEF introduced the Ten Questions screen for disability.[3, 4] Children and young people with disabilities constitute about 4-6.5% of the population in many countries.
In the UK, 7.3% of children aged under 18 years are reported to be disabled as defined by the Disability Discrimination Act (DDA). DDA-defined disability includes children with a limiting long-standing (12 months' duration or longer) illness, disability or infirmity, experiencing one or more significant difficulties or health problems. It also includes those who would have such difficulties or problems if they did not take medication.
Useful comparable, historical prevalence figures are hard to come by, but it appears that the incidence of disability among children and adolescents has risen over a period of thirty years. This apparent rise has several contributing factors:
- It 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, the autistic spectrum disorders (ASDs) 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.
- 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.
Presentation of disabilities
There are a number of ways in which disabilities can become apparent:
- Antenatally or at birth if physical anomalies are present.
- In the first year of life for motor or severe learning disabilities.
- In the second or third year of life for moderate learning disabilities, language disorder or autism.
- Following a cranial insult.
Range of disabilities
Clearly, there is a vast spectrum of disabilities that can affect children. These can broadly be categorised into physical and learning disabilities, although there is often an overlap between the two.
There are many physical disabilities that can affect children, such as delayed walking, deafness or visual impairment. Cerebral palsy (CP) is the most common physical disability in childhood. Approximately 2 per 1,000 infants in developed countries are born with the condition. 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. 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.
There are other conditions that may not be traditionally seen as disabilities but are chronic in nature and therefore can have an impact on the child's development in more subtle ways (eg through days lost at school, inability to partake fully in physical activities, need to take medication regularly). These include asthma or diabetes for example.
This may be caused by genetic factors, infection prior to birth, brain injury at birth, brain infection, brain damage after birth or due to an unknown reason. Again, there is a significant list of associated conditions, perhaps the most well known being Down's syndrome. The effects may be far-reaching, with speech and communication problems which can result in (or be associated with) behavioural problems. Associated physical problems are common. The stigma attached to some of these conditions places an extra burden on a family which may be having to cope with significant stresses already. See 'Coping with disability and chronic illness', below.
Management of a disability
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.
- The diagnosis is the first step to be considered in the management of these cases. A sensitive approach must be taken by a senior professional.
- Medical management may be at home, in the community or in the hospital environment.
- Genetic counselling may be needed.
- Children with complex difficulties may need a multiprofessional input. Members of the team can include a developmental paediatrician, physiotherapist, occupational therapist, speech and language therapist, psychologist, special needs teacher, social worker and liaison health visitor.
- The provision of many services is organised by social services. This may include preschool child care, respite care, home help, advice about benefits and assessment for services on leaving school.
- Education is crucial - both the nature of the problem and the management strategies. Families may be in for a long physical and emotional haul; they need to feel involved in the process at every stage and can only do this with enough appropriate information to hand.
- Voluntary agencies can also play a valuable role in support and provision of information.
- Key-workers should be in place to provide continuous support, provide necessary information, improve communication and co-ordinate multi-agency interventions.
Coping with disability and chronic illness
The initial reaction
When a baby is expected, it is expected to be perfect. Unless this is a family with a history of genetic conditions, the family's initial reaction may be similar to one of bereavement:
- Shock and confusion
The way that the news is broken will affect the way that the family comes to terms with the situation and their ability to cope. It is worth remembering that the initial shock may make the parents unreceptive to the information provided and they need to be given the information several times before it can be accepted. A particularly sensitive approach may be needed in certain cases where the biomedical model of understanding of the child's disability may be coloured (or replace) with a theological explanation for the situation - particularly among certain ethnic minority communities.
Effects on the family
There will be important implications on all the family. The parents will need to take on board a lot of new information in addition to having to cope with the emotional difficulties of adapting to the news. They will also suddenly have to face making important decisions during the different stages of their child's illness. As one stage goes by, there will have to be further emotional and practical adaptations to the next with more decisions to be made. With this there may be:
- Social isolation:
"Disablement and handicap are brought about by physical and psychological changes in the disabled person, and by society's response to them. The way society views people with disabilities can compound their condition."
- The care that the child needs can be time-consuming and exhausting, giving parents less opportunity to engage in normal family activities. The child's environment also contributes to their ability to participate in life. Social, legislative, and other external influences have a powerful influence on the day-to-day lives of people with disabilities and their families.
- The disabled child's needs may be very different to the needs of a child without disabilities and so there is less to share with other parents of similarly aged children.
- Families with disabled children may also experience negative attitudes from others, leading to social exclusion of the whole family, including siblings.
- The cultural community to which the child belongs may have different responses to disability; the parents may have to cope with additional negative and stigmatising beliefs about causes of disability as well as managing the situation within the family.
- Financial implications:
- Disabled children are more likely to live in poverty than non-disabled children. Furthermore, poverty increases the risk of a child having an impairment, eg increased risk of low-birthweight 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.
- Expenditure on the child's basic needs is increased. This is often coupled with increased spending on transport and car park fees when attending multiple healthcare professional clinics.
- Implications for the siblings:
- The effects of a seriously ill or disabled sibling may manifest itself in a variety of ways. Some children become protective and supportive. Others may experience jealousy, embarrassment, the sense of neglect, the sense of exploitation (eg having to take over household chores), guilt or fear.
- Children also grieve, which can manifest itself in a number of ways, depending on the child's age. As a rule of thumb, the younger the child, the more physiological the response. So a young child might stop eating, whereas the older child may experience wild mood swings or choose to become isolated.
The individual's development
The individual's experience of life with their disability will be greatly influenced by their own personal attributes, their family and social surroundings and the level of care that they receive. It is worth remembering that there may be increased levels of need at key points in that person's life, such as starting school, going through puberty and leaving the children's services.
The child's educational needs will be a particular area of concern to parents. There may have to be a Statement of Special Educational Needs and special schooling may have to be considered. It has been shown that NHS support for children who remain in mainstream schooling is valued but patchy. National guidance remains poor in certain respects and those involved in the child's education (teachers and associated staff) benefit from close links with healthcare workers.
The long-term outlook for these children remains variable, depending on the nature of the problem. Some children will face a rapid physical decline and early death; others, such as those with cerebral palsy (CP), will take their disability with them into adulthood. A study looking at children with severe learning difficulties over several decades found that, after an initial increase in skill between childhood and adolescence, skill level remains fairly stable. Some skills continue to increase; few deteriorate. However, problem behaviour tends to remain the same, at best, if not deteriorate and, by the same token, social impairments show no improvements in the absence of intensive input.
Further reading and references
Carer's Allowance; GOV.UK
ANNEX 2: Physical and Complex Disabilities Client Group R&D Priorities: Priority 5: Mechanisms of disablement and handicap; ANNEX 2: Physical and Complex Disabilities Client Group R&D Priorities: Priority 5: Mechanisms of disablement and handicap, Dept of Health (August 2002)
Maulik PK, Darmstadt GL; Childhood disability in low- and middle-income countries: overview of screening, Pediatrics. 2007 Jul120 Suppl 1:S1-55.
Gottlieb CA, Maenner MJ, Cappa C, et al; Child disability screening, nutrition, and early learning in 18 countries with Lancet. 2009 Nov 28374(9704):1831-9.
Rosenbaum P; Childhood disability and social policies. BMJ. 2009 Apr 24338:b1020. doi: 10.1136/bmj.b1020.
Blackburn CM et al. Prevalence of childhood disability and the characteristics and circumstances of disabled children in the UK: secondary analysis of the Family Resources Survey. BMC Pediatrics. Apr 2010.
Pallapies D; Trends in childhood disease. Mutat Res. 2006 Sep 28608(2):100-11. Epub 2006 Jul 18.
Rosenbaum P; Cerebral palsy: what parents and doctors want to know. BMJ. 2003 May 3326(7396):970-4.
Croot EJ, Grant G, Cooper CL, et al; Perceptions of the causes of childhood disability among Pakistani families living in the UK. Health Soc Care Community. 2008 Dec16(6):606-13. Epub 2008 Apr 1.
Zacharin MR; Puberty, contraception, and hormonal management for young people with disabilities. Clin Pediatr (Phila). 2009 Mar48(2):149-55. Epub 2008 Oct 2.