Variation in mental and physical health of children with learning disability or autism, their mothers and siblings
Feb 2019 – January 2022
Dr Ania Zylbersztejn, Dr Pia Hardelid, Professor Steve Morris, Dr Kevin Herbert, Professor Terence Stephenson, Professor Roz Shafran
What we found out
Trends and reasons for hospital admissions for adolescents with learning disabilities or autism change as young people move from child to adult healthcare services. At the time when they move into adult care (around 16-18 years old) there is a drop in the number of planned hospital visits. This is mainly due to fewer admissions for reasons other than surgery (in particular, for respite care). On the other hand, unplanned visits to hospitals became more frequent with age, especially due to non-specific symptoms (such as nausea, headache), self-harm and mental health problems.
Local authorities with higher levels of funding for pupils with complex needs (“high-needs funding”) and basic school funding per-pupil had on average lower school exclusion rates, especially for pupils with special educational needs (SEN) attending mainstream schools. Most of the findings, however, were not statistically significant.
Why we did this study
Improving lives of children with learning disabilities or autism requires join-up between schools, health and social care services. We wanted to explore possible interventions across different services.
Why this is important
Young people with learning disabilities or autism are more likely to have complex health needs and require frequent interactions with healthcare. Parents of children with complex needs told us that transition from child to adult health services is a stressful time, when coordination of care is likely to fail, often leading to worse health outcomes.
Children with learning disabilities or autism are also more likely to need additional support in schools (known as SEN support) to gain equal access to education and improve their wellbeing, school and health outcomes. It is known that funding, demand and provision of SEN support vary between UK local authorities.
What are the implications
Young adults with learning disabilities and autism could be having more difficulty accessing planned hospital care. Alternatively, they may receive more support in primary, community or outpatient services and therefore have less need for hospital admissions. More research is needed to understand what happens in other healthcare settings and if continuity of planned care can reduce the need for unplanned hospital visits.
Higher levels of “high-need” and school funding were linked to lower school exclusion rates, especially for pupils with SEN in mainstream schools. With more funding, mainstream schools may be able to create a more inclusive environment and better integrate pupils with SEN. Alternatively, more pupils with SEN might be placed in special schools (funded from high-needs budget), due to funding pressures in mainstream schools.
What we did
We developed national cohorts of young people with learning disabilities or autism using data on all hospital admissions funded by the National Health Service. We described trends in frequency of hospital admissions and the most common reasons for admission before, during and after transition from child to adult care. Our novel algorithms for creating cohorts of children with learning disabilities or autism are publicly available to support future research.
Funding for SEN support comes from multiple sources and deriving a measure of total funding for SEN provision is challenging. We created a dashboard which combines information about pupils with SEN and funding for SEN support for UK Local Authorities. We used these data to examine whether higher levels of funding per local authority were linked to lower school exclusion rates.