Special Educational Needs: support in England
An overview of the current system of support for children and young people with special educational needs, and pressure on the system. Updated with new 2024-25 SEND incidence and EHC plan data
Background
Down’s syndrome is a genetic condition that causes a range of physical and developmental differences. The condition can be referred to as either ‘Down syndrome’ or ‘Down’s syndrome’.
It is caused by a random genetic change, or a ‘genetic mutation’. Typically, people are born with 23 pairs of chromosomes – these are packages of genes present in each of the body’s cells. These genes contain a code, which tell the body to know how to function.
People with Down’s syndrome have three copies of chromosome 21, instead of two copies. For this reason, Down’s syndrome is also called ‘Trisomy 21’.
The genetic change that causes Down’s syndrome is random. It happens by chance and is not caused by anything that happens before or during pregnancy. Because the genetic change is random, this means the condition is not inherited and does not run in families.
Any baby can be born with Down’s syndrome, but the chance of this happening increases as the mother’s age at conception increases.
Between 10 and 14 weeks of pregnancy, women are offered a screening test to find out the chance of having a baby born with Down’s syndrome. The test involves an ultrasound scan with a blood test.
The NHS webpage, What is Down’s syndrome?, provides more information.
Learning disability
People with Down’s syndrome have some level of learning disability, but the extent varies between individuals.
Physical differences and health conditions
People with Down’s syndrome also have differences in their physical characteristics, including:
- A flattened face, especially the bridge of the nose
- Almond-shaped eyes that slant up
- A tongue that tends to stick out of the mouth
- Small ears, hands and feet
- Shorter-than-average height
People with Down’s syndrome may also have additional health conditions. About half will be born with a heart condition (congenital heart disease). They may also have problems with their vision, hearing and immunity (making them more prone to infection).
The NHS also notes that people with Down’s syndrome may also have autism and develop Alzheimer’s and dementia at an earlier age.
Care for people with Down’s syndrome
There is no specific medical treatment for Down’s syndrome. Rather, people will be offered treatment and care based on their individual needs. For example, people might need treatment for heart, visual or hearing problems.
People with Down’s syndrome will also be offered support with speech, language and communication depending on the needs specific to the nature of their learning disability.
Prevalence
In 2021, there were 700 live births of babies with Down’s syndrome in England. This equates to a prevalence of around 12 per 10,000 live births. There were 36 stillbirths or miscarriages with Down’s syndrome and 1,049 pregnancies with Down’s syndrome were terminated.
The prevalence of genetic anomalies was over seven times lower for younger pregnant people. For pregnant people aged 20-24, the prevalence of genetic anomalies was 37 per 10,000 births, compared to 265 per 10,000 births for those aged 40 and over.
Down syndrome regression disorder
The US National Down Syndrome Society (NDSS) describes DSRD as a rare but serious disorder involving the loss of skills an individual has previously learned. The skills could be related to daily living, language, movement or social skills, and the loss is often sudden and occurs over a period of weeks to months. According to the NDSS, DSRD is rarely diagnosed in people who are younger than 10 or older than 30 years old.
The British Psychological Society (BPS) has published guidance on dementia and people with intellectual disabilities (May 2025). It includes a section on Down syndrome regression disorder (DSRD) and provides an overview of the condition. It explains that people experiencing DSRD might show a rapid deterioration of functioning in their teens or early adult life, often following a life event, and either never fully or, only after many months or years, recover. The clinical features include the development of:
a general slowness in mental and/or physical activity, apparent loss of interest in previous activities, and a level of functioning that is below that previously observed, often accompanied by other features of catatonia such as mutism.
Catatonia, as referenced above, is a state in which a person is awake but does not seem to respond to other people and their environment. It can affect people’s movement, speech and behaviour in different ways.
The BPS guidance also notes that, in some people, the presentation might include “autistic features”.
No statistics are available on the prevalence of Down’s Syndrome Regression Disorder in England.
Cambridge University study on Down syndrome regression disorder
Learning Disability Today is an online news and professional resource covering issues related to disability. Its May 2025 article, Down’s Syndrome Association: how are we improving health outcomes?, set out work being undertaken to improve outcomes for people with learning disabilities. The Down’s Syndrome Association is a UK based organisation that provides support and advocates for people with Down’s syndrome.
The article included work undertaken by the Down Syndrome Association on DSRD, including funding Cambridge University to carry out a systematic review of unexplained early regression in adolescents and adults with Down’s syndrome.
The resulting review, A Systematic Review of Unexplained Early Regression in Adolescents and Adults with Down Syndrome, was published by Cambridge University in 2021. The review sought to examine the evidence surrounding unexplained regression in adolescents and young adults, establish patterns that may be of use to clinicians, and raise awareness of the condition. The researchers analysed information relating to 186 people with Down’s syndrome. This included 39 patients that were discussed in case studies and 147 patients that were included in cohort studies.
A case study is a type of clinical study that provides a detailed, in-depth examination of a single individual. A cohort study is a type of observational study that examines the relationship between exposures (such as risk factors, behaviours or treatments), and outcomes (like diseases or recovery) over time in a defined group of people.
The review discussed a wide range of findings, including:
- The wide range of symptoms associated with DSRD, including irritability, fatigue/inactivity, depression, loss of functional skills, disinterest/withdrawal and language decline.
- The occurrence of significant life events or “triggers” prior to the regression occurring.
- The range of medication used to treat symptoms occurring with regression; antidepressants and antipsychotics were the most frequently used.
- Prognosis after the regression episode. Researchers found that while most patients made some level of recovery from their regressive episode, 26 of the 39 case study patients made only a partial recovery
The disability benefits systems
The social security system provides support for people with health conditions or disabilities and their families in two main ways:
- Benefits intended to help with extra costs arising from ill-health or disability. The main ‘extra costs’ benefits are Disability Living Allowance (DLA) for children under 16, Personal Independence Payment (PIP) for working-age adults, and Attendance Allowance (AA) for people over State Pension age.
- ‘Income maintenance’ or ‘income replacement’ benefits, intended to cover basic day-to-day living expenses. This includes Universal Credit (UC), and Employment and Support Allowance (ESA). UC can include an additional ‘health element’ for adults whose condition limits their ability to work, and additional amounts for disabled children.
Eligibility for these benefits does not depend upon a person being diagnosed as having a particular health condition or disability, but on how their condition or disability affects what they can do – their functional ability. Eligible claimants can claim both types of benefits at the same time. A person with Down syndrome regression disorder will not automatically be entitled on account of their diagnosis, but may qualify due to the impact the condition has.
Detailed background on this system of disability benefits can be found in section 1 of the Library’s briefing Changes to benefits for disabled people. Sections 2-4 of the briefing discuss recently proposed changes to PIP and Universal Credit.
Parliamentary debate
Westminster Hall debate – Down’s Syndrome
HC Deb 19 March 2025 | Vol 764 cc171-190WH
Useful links
National Down Syndrome Society
Down’s Syndrome Association
‘Regression’ in Down’s syndrome
Learning Disability Today
2 June 2025
Down’s Syndrome Association: how are we improving health outcomes?
Down Syndrome Resource Foundation blog
Spring 2024
U-Turn: Down Syndrome Regression Disorder
Down’s Syndrome Association
September 2023
Regression in people who have Down’s syndrome (PDF)
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