Evaluating variation in special educational needs provision for children with Down syndrome and associations with emergency use of hospital care
The National Down Syndrome Cytogenetic Register collects information on all diagnoses of Down syndrome in England and Wales to inform service planning for the health, education and social care needs for children with Down syndrome. Until now, the register has focused on the prevalence of live births, stillbirths and terminations of pregnancy and the health needs of the surviving infants with Down syndrome in the first year of life.
This research aims to take a longer term view and to understand more about the services these children receive and the effects on their lives and wellbeing.
The research will provide evidence on how provision of special educational needs care and out-of-home care varies, and how this affects adverse health outcomes, measured by rates of emergency admission. This will help policy makers, the public and children with Down syndrome and their families. The results can help in developing policies and strategies to reduce unplanned hospital admissions in children and young people with Down syndrome who have many medical problems, such as recurrent severe respiratory tract infections, as well as extra learning needs.
Public Health England, NHS Digital, Department for Education
More about the research
The National Down Syndrome Cytogenetic Register (NDSCR)1 has been collecting information on all diagnoses of Down syndrome in England and Wales since 1989, with around 700 live births per year in England. The aim of the NDSCR is to undertake national surveillance of Down syndrome pregnancies and births in order to inform service planning for the health, education and social care needs for children with Down syndrome. Until now, the register has focused on the prevalence of live births, stillbirths and terminations of pregnancy and the health needs of the surviving infants with Down syndrome in the first year of life. The surveillance, however, should include longer term outcomes and educational needs as an important part of the well-being of children with Down syndrome.
Children with Down syndrome require additional support from education and social care services to fulfil their potential and develop into adults who can lead independent lives and contribute to society. As well as supporting a child’s educational and social development, these services may provide elements of proactive care and monitoring that allow parents and services to anticipate and address healthcare needs. For example, special educational needs (SEN) provision in a special school may provide access to nurses or community paediatricians which could potentially avoid deterioration of a child’s health leading to an emergency hospital admission. Provision of out-of-home respite care, widely used to support children with complex needs and their families, may also complement or compensate for input by health and education services.
The extent to which education and social care services work together can vary greatly between local authorities and, as these services are strongly determined by local policies and budgetary constraints. The way local authorities respond to children’s needs may also differ. Wide variation by local authority in the type of SEN support available (e.g. mainstream or special schools), thresholds for SEN provision and access to out-of-home respite care is known to exist. A child with complex needs may receive frequent out-of-home respite care but limited SEN support in one local authority, whereas the reverse may be true for a similar child in another local authority. This situation, whereby children with similar needs receive different types and levels of support based on geographical location, is often described by parents and policy makers as a “postcode lottery” of service provision.
Research team/lead researcher
Dr James Doidge, UCL