Down Syndrome Act 2022

Policy background

5. There are currently estimated to be around 47,000 individuals living in the UK with Down syndrome. Down syndrome is caused by having an extra chromosome at birth and a person with Down syndrome will have some degree of learning disability, though it varies between individuals.
6. People with Down syndrome have an increased risk of some medical conditions including congenital heart disease, seizures, early-onset dementia and leukaemia. They are also more susceptible to infections and are more prone to hearing and visual impairments compared to the general population. Due to the frequency and extent to which these issues occur in people with Down syndrome, it is recommended that they should have extra health checks in early life, and regular health reviews throughout their lives.
7. People with Down syndrome may be at an even greater risk of early death than people with learning disabilities without Down syndrome. A cohort study suggested that the ratio of observed deaths among the study group to expected deaths in the general population is greater for those with Down syndrome (5.28) than those with learning disabilities without Down syndrome (1.69). 1 The life expectancy for people with Down syndrome has increased in recent years to around 58 years, and as such there is a need to address community-based services to support the long-term care needs of an aging population of people with Down syndrome. This includes people with Down syndrome who outlive their parents and need greater support to adjust to this change in their life circumstances.
8. A child with Down syndrome might take longer than other children their age to reach milestones and to develop certain skills. They may also need ongoing support for different aspects of their life when they become an adult.
9. People with Down syndrome and their families are reported to often struggle to access services such as speech and language therapy, additional support in school, and appropriate levels of social care support.
10. Current government policy focuses on recognising and addressing the inequalities and premature mortality faced by all people with a learning disability, including people with Down syndrome. Policy does not typically differentiate between different parts of the population except where there is clinical justification (for example adults with Down syndrome were identified as being at far greater risk of severe outcomes from COVID-19 and identified as Clinically Extremely Vulnerable).
11. The above evidence indicates that people with Down syndrome face specific challenges. The Act seeks to address these by ensuring that relevant authorities will have clear guidance on steps it would be appropriate for them to take in order to meet the needs of persons with Down syndrome in executing their existing relevant functions. The guidance will also help individuals with Down syndrome and their families to have a clearer understanding of what they can expect and what they are entitled to receive.