Children with disabilities have complex health needs. Many of the issues described in Chapter 61 are relevant to families with a disabled child. It is important to appreciate the terminology relating to disability.

A disorder is a medically definable condition or disease; an impairment is a loss of function; disability refers to any restriction of ability (resulting from an impairment) and handicap is the impact of the impairment on the child’s activities.

The distinction between disability and handicap is important. One of the aims is to minimize the handicap that results from disability. It is important to consider how people with disability are perceived by society—there are ongoing issues of poor accessibility, prejudice and discrimination affecting people with disability.

Some parents will describe their child as having ‘special needs’ rather than as either disabled or handicapped. This term is used by professionals in discussion with families and in the educational setting when a child may have a Statement of Special Educational Needs.

How Disability Presents

Children with disabilities may be identified as a result of parental or professional concern. A syndrome or central nervous system abnormality may be identified in the antenatal period or at birth. Babies with neonatal problems are followed up closely as they are at high risk of disability. Deafness, motor handicaps and severe learning disabilities often become apparent during the first year. Moderate or even severe learning disabilities, language disorder and autism may not be recognized until the child is 2 or 3 years of age, when it becomes clear that their developmental progress is not normal. Problems may arise in later childhood after acute illness events such as head injury or brain tumour.

Assessment and Diagnosis of a Child with a Disability

Identifying the underlying medical problem is one aspect of the assessment. There is also a developmental evaluation and an assessment of how the difficulties are likely to impact on the child’s family and school life. When difficulties are complex, a Child Development Team should be involved (see adjacent box).

Paediatric Care

A holistic approach is needed. Sensitive support is important while parents come to terms with their child’s difficulties and at each transition. Care often involves a number of professionals, both medical and non-medical, from different specialties and agencies. It can be helpful for families to have a named professional who acts as their key worker in coordinating the multidisciplinary team, e.g. arranging outpatient visits to different therapists on the same day to reduce absence from school.

The diagnosis of a disability is usually devastating and the way that the diagnosis is communicated is important, coming at the start of a long doctor–patient relationship. The session should be conducted in private by a senior doctor with both parents present. There should be opportunity for questions, with a follow-up session arranged shortly after. If a baby is born with congenital anomalies, consultation with parents should take place as concerns arise, with the baby present, sharing with the family the concerns and describing the process of making a definitive diagnosis.

Once the child’s difficulties have been fully assessed, developmental therapy is required. This may be delivered in the child development centre, at home or at nursery. Once the child is in full-time school, the services are often delivered by community therapists who work with the child and advise school staff.

Provision of Services

Agencies other than health are involved in providing services to the family:

• Education services are responsible for assessing learning difficulties, providing preschool home teaching, nursery schooling and education both in mainstream and special schools. Children who require medical treatments in school (such as drugs via gastrostomy) should have a written health care plan agreed to support staff in giving the child’s treatment
  
• Social services are responsible for providing preschool child care, relief care, advice about benefits and assessment for services needed on leaving school. Child protection concerns also fall into their area.
  
• Voluntary organizations provide support and information for families, run play facilities, provide educational opportunities and sitting services. Some are large national agencies with numerous local branches, others are smaller groups concerned with a local issue or a single diagnosis.

The Child with Special Educational Needs

Children with special needs are educated in mainstream schools where possible. Extra help with learning and physical difficulties is provided in the classroom. This often involves a special needs assistant for the child, and may also include physiotherapy, occupational therapy and speech and language therapy. Mainstream placement has the advantage of integrating children with special needs into a local peer group and encourages their inclusion in society from an early age. It has the benefit that other children learn to live alongside children with disabilities and view this as normal. However, there can be disadvantages such as large classes, less specific support and buildings poorly adapted for physical difficulties.

Special schools provide teaching in smaller classes. Staff have a greater experience of complex medical needs. The disadvantage is that children are not included in a wider social group. An alternative approach is to have specialist units within a mainstream setting.

The Statement of Special Educational Needs

The education authority is obliged to assess children who need additional provision because of severe or complex difficulties. The assessment includes reports from an educational psychologist, a paediatrician and other professionals such as therapists and the child’s nursery or school. It clarifies the medical needs, the educational needs, the needs for physical assistance, supervision and transport. A legally binding document is produced called the Statement of Special Educational Needs. The child’s educational needs and the necessary support are stated and these are reviewed on an annual basis.

Transition to Adult Services

There is a statutory requirement that social services make a formal assessment of a child’s long-term needs as they approach adult years for those children with a Statement of Special Educational Needs with complex health or disability problems. The assessment is conducted with information from health, education services, the young person and family. Transition from the long-term paediatric medical team, therapists and education setting to adult health and social care is difficult and needs careful planning. Children with severe complex needs may need residential care as adults or significant extra support to live independently. There is a need for ongoing support from specialist clinicians with expertise in adult learning disability.