Supporting toileting issues in children with Down syndrome
Children with Down syndrome can and should be toilet trained. This page brings together national best practice guidance, clinical resources and practical tools for health, education and social care professionals, to support timely, effective and personalised toileting support for every child.
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Delays in toilet training have lasting consequences – not just for continence, but for a child’s social development, bladder health and quality of life (Rogers 2026).
Research shows that later toilet training is associated with social stigma and reduced social opportunities when starting school (Dreher et al, 2022). Starting toilet training after 24 months is also linked to a higher likelihood of urinary incontinence in later childhood (Joinson et al, 2009 and 2018).
Children with Down syndrome are more likely to experience bladder and bowel difficulties than typically developing children (Kitamura et al, 2014; von Gontard et al, 2016). Timely, appropriate assessment and support matters.
The Pants4School programme, led by June Rogers MBE, has supported over a thousand families to toilet train their child with Down syndrome – many of whom started school in pants.
National best practice guidance
In November 2023, Down Syndrome UK and Bladder and Bowel UK published a consensus best practice guideline document for professionals. It is endorsed by the Royal College of Nursing and Paediatric Continence Scotland.
Key recommendations
Families of children identified with any learning disability should be offered support from the first year of life – or as soon as the disability or condition is recognised – from a healthcare professional with expertise in toilet training.
All professionals should maintain high expectations for the ability of all children, including those with learning disabilities, to acquire the skills for toileting. Every child deserves the opportunity to reach their potential in this aspect of personal care.
All children with a condition that may delay toilet training should receive an early assessment of their bladder and bowel health.
Containment products should not be offered to children with learning disabilities or developmental differences without them first having had at least six months of a supported toilet skill development programme, following comprehensive assessment. Products should only be offered from age five, in line with national guidance.
The Pants4School Programme
The four-step Pants4School programme provides a structured, evidence-informed approach to toilet skill development, beginning at the weaning stage (six to nine months). It can be used or adapted for any child, at any age, with any developmental ability, physical difference or learning disability.
The programme covers getting started with equipment and early potty sitting (step one), building sitting tolerance and routine (step two), baseline bladder and bowel assessment and timed toileting (step three), nappy removal and managing the transition (step four), and night-time continence (step five).
The most effective approach combines a toileting schedule with positive reinforcement and consistent prompting, with the family taking a leading role (Dreher et al, 2022).
Bladder and bowel health
Children with Down syndrome have a higher incidence of congenital abnormalities affecting the bowel such as Hirschsprung’s disease and anorectal malformations, as well as conditions such as coeliac disease and constipation. It is important therefore to consider underlying co-morbidities if problems such as constipation fail to resolve with optimum treatment.
Constipation
Constipation affects up to 70% of children with Down syndrome and is a frequent barrier to successful toilet training. It is not a benign condition. Untreated constipation affects continence, behaviour, health and wellbeing.
First-line treatment is a macrogol laxative (Movicol, Laxido or CosmoCol) in line with National Institute for Health and Care Excellence (NICE) guidance. If this is insufficient, a stimulant laxative (senna or sodium picosulphate) should be added. Where constipation does not respond to optimum treatment, specialist referral is needed – and both Hirschsprung’s disease and coeliac disease must be excluded.
Slow gut transit is a contributing factor for many children with Down syndrome and should be considered when managing constipation that does not respond to standard treatment.
Hirschsprung's disease and ano-rectal malformations
Around 10% of babies with Down syndrome are born with Hirschsprung’s disease or an ano-rectal malformation (ARM). Coeliac disease (around 16% of children with Down syndrome) and Hirschsprung’s disease (around 15%) must both be excluded when constipation does not respond to laxative treatment.
Many children with these conditions, following surgical intervention, go on to be toilet trained at a similar age to their typically developing peers – though some will need additional support and a longer timeline.
Urinary issues
Children with learning disabilities are more likely to experience lower urinary tract difficulties. For children over five who remain constantly wet despite a timed toileting programme, clinical assessment is needed to exclude underlying issues – including urine infections, constipation as a driver of frequent wetting, and congenital differences. Body-worn wetting alarms can be effective for children over five who are not recognising bladder signals (Lancioni et al, 2002).
Supporting children in educational settings
Legal framework
Schools and nurseries across England, Wales, Scotland and Northern Ireland have legal obligations to support children with toileting needs. Under the Equality Act 2010, providing intimate care is a reasonable adjustment for disabled learners. It is not lawful for a school to ask parents to attend school to change their child, to return a child to disposable continence products to manage incontinence, or to knowingly leave a child in wet or soiled clothing.
Intimate care in practice
An individual intimate care plan should be in place for any child needing toileting support in school or nursery.
This should cover the child’s needs, relevant routines, communication approaches, reward strategies, staff responsibilities and review dates. Staff should keep a written record of drinks, toilet visits and any accidents. This supports progress monitoring and helps identify when the programme needs adjusting.
Consistency across settings
Toilet training programmes work best when they are consistent across home, nursery and school.
Professionals should ensure the family’s approach is shared with all settings, using the same language, signs and pictures as home. Reward strategies should be agreed with both family and school – a token exchangeable for a home reward can bridge the gap where schools prefer non-food rewards.
Resources for professionals
Probiotics - your questions answered
Referring families and professional training
For information about professional training in toilet training and continence support for children with Down syndrome, contact us at info@downsyndromeuk.co.uk.
Refer a family to the Toilet Training Bootcamp
Refer families to our support groups
A group where parents of and professionals working with children with Down syndrome in the UK, can share advice, experiences, resources and access training and support, around toilet training.
Looking for parent-friendly resources to share with families? Our parent page has free downloads and guidance written for families.