Down Syndrome in Ireland:
Information, Statistics and Supports
Down syndrome is the most common genetic cause of intellectual disability, and Ireland has one of the highest birth rates for the condition in Europe. This guide brings together the key facts, the health checks that matter, and the State supports available in Ireland and Northern Ireland, with links to the official sources for each.
What is Down syndrome?
Down syndrome is a genetic condition in which a person is born with an extra copy of chromosome 21 in some or all of the cells in their body. This gives them 47 chromosomes rather than the usual 46. The extra chromosome affects how the brain and body develop from the earliest stages, and the condition is lifelong.
Down syndrome is not caused by anything that happens during pregnancy. The genetic difference occurs at conception. In the great majority of cases it is not inherited, although a very small number of cases can be. Where there is a question about this, a GP or paediatrician can advise on whether genetic counselling would be helpful.
Every person with Down syndrome is an individual, with their own abilities, strengths and personality. The level of intellectual disability varies, and with the right health care, education and community supports, many people with Down syndrome lead active, full and independent lives.
Source: downsyndrome.ie/about/what-is-down-syndrome
Types of Down syndrome
There are three types of Down syndrome, and every person with the condition has an extra copy of chromosome 21 in some or all of their cells.
Trisomy 21 accounts for about 95% of cases. Here, an extra copy of chromosome 21 ispresent in every cell of the body .
Translocation accounts for about 3 to 5% of cases. In this type, an extra copy of part or all of chromosome 21 is attached to another chromosome. Translocation is the type most likely to have a hereditary element, which is why genetic counselling may be offered to families.
Mosaic Down syndrome accounts for about 1 to 2% of cases. Some cells have the extra copy of chromosome 21, while others have the usual 46 chromosomes.
The type is confirmed by a chromosomal analysis, which is a blood test carried out after birth or whenever Down syndrome is suspected.
Source: downsyndrome.ie/about/what-is-down-syndrome
How common is Down syndrome in Ireland?
Down Syndrome Ireland estimates that about 9,000 people in Ireland have Down
syndrome, and that the condition affects roughly one in every 444 births.
The Rotunda Hospital in Dublin puts the figure at roughly one in 500 births, and notes that this is one of the highest rates in Europe. The Rotunda alone sees between 20 and 25 babies with Down syndrome born each year. The small difference between these figures reflects different years and methods of counting. Both point to the same conclusion: Down syndrome is far from rare in Ireland, and families are not alone.
Sources: downsyndrome.ie/about/what-is-down-syndrome
and
rotunda.ie/syndrome-research-heart-rotunda
Diagnosis and health
Down syndrome may be identified during pregnancy through screening and diagnostic tests, or after birth. In either case, a chromosomal blood test confirms the diagnosis and the type.
Because the extra chromosome affects the whole body , some medical conditions are more common in people with Down syndrome. The most significant in infancy is congenital heart disease, which affects around half of babies with the condition. Every baby with Down syndrome should have their heart checked soon after birth. A review at the Rotunda Hospital found that the majority of babies born there with Down syndrome were admitted to the Neonatal Intensive Care Unit, so a stay in special care is common and often precautionary. Other conditions to monitor include thyroid disease, hearing loss, eye and vision problems, growth, and instability of the upper spine. Ireland has its own Medical Management Guidelines for Children and Adolescents with Down syndrome, which set out recommended checks for each of these. Regular review every two years between the ages of five and 18 is recommended, even where a child is well. Most conditions associated with Down syndrome can be treated or managed, and a GP or paediatrician is the first point of contact for any concern.
Down Syndrome Ireland employs a clinical nurse specialist, based at Children’s Health Ireland in Tallaght, who can meet children from anywhere in the country.
Sources: downsyndrome.ie/our-work/health
and
rotunda.ie/syndrome-research-heart-rotunda
Early intervention and disability services
In Ireland, therapy services for children with complex needs are provided through the HSE’s Children’s Disability Network Teams (CDNT s). These teams support children up to the age of 18 and specifically include children with intellectual disability and chromosomal conditions such as Down syndrome.
A CDNT may include occupational therapists, speech and language therapists, physiotherapists, psychologists, social workers and clinical nurse specialists. Teams work in partnership with the family to agree an Individual Family Support Plan, which sets out the goals to work on. They also link in with preschools and schools.
A child does not need an Assessment of Need report to access a CDNT, but they do need a referral, and the HSE guidance below explains how this works. Separately, anyone born on or after 1 June 2002 who has a disability can apply for an Assessment of Need under the Disability Act 2005, which identifies their health and education needs.
The HSE’s CDNT information, referral guidance and a search tool to find the local team are at www2.hse.ie/babies-children/disabilities/services/cdnt, www2.hse.ie/babies-children/disabilities/services/getting-a-referral
and
www2.hse.ie/services/childrens-disabilities.
Financial supports in Ireland
The main payment is Domiciliary Care Allowance (DCA), a monthly payment for a child under 16 with a severe disability who needs ongoing care and attention substantially greater than that usually needed by a child of the same age. DCA is not means tested, and eligibility is based on the level of care needed rather than on a specific diagnosis.
Where a baby stays in hospital for treatment immediately after birth, DCA can be paid for up to 18 months while they remain in hospital, for babies born on or after 1 January 2023. Getting DCA can also open the way to the annual Carer’s Support Grant, and a parent providing full time care may qualify for Carer’s Allowance or Carer’s Benefit. Full details, including how to apply, are on Citizens Information at
citizensinformation.ie/en/social-welfare/disability-and-illness/domiciliary-care-allowance,
citizensinformation.ie/en/social-welfare/carers/carers-support-grant
and
citizensinformation.ie/en/social-welfare/carers/carers-allowance.
Preschool and school
The Access and Inclusion Model (AIM) supports children with disabilities to take part fully in the free preschool programme, known as ECCE. AIM offers seven levels of support, from inclusive training for staff to specialist advice, equipment, minor building alterations, therapy input and additional help in the preschool room. A formal diagnosis is not required, as support is based on the needs of the child. Information for families is at
At primary and post primary level, the National Council for Special Education (NCSE) oversees special education supports. Many children with Down syndrome attend mainstream classes, supported by special education teaching hours and, where there are significant care needs, a Special Needs Assistant (SNA). Others attend a special class within a mainstream school or a special school, depending on their needs.
Each area has a Special Educational Needs Organiser (SENO) who advises families on placement options. For a special class or special school place, families use the NCSE’s Parents Notify process to receive a Letter of Eligibility, and then apply directly to schools.
Children attending their nearest suitable special class or special school may also qualify for the School Transport Scheme.
Useful pages are ncse.ie/choosing-a-school,
ncse.ie/special-needs-assistant-sna,
and
citizensinformation.ie/en/education/special-education-needs/special-needs-education-primary-schools.
Northern Ireland
In Northern Ireland, the term Down’s syndrome is more commonly used. Health and herapy services are delivered through the local Health and Social Care Trusts, while special educational needs in schools are managed by the Education Authority at
The main financial support for children is Disability Living Allowance (DLA), a tax free benefit for children under 16 who need more looking after than a child of the same age without a disability, or who have difficulty getting around. A parent who spends at least 35 hours a week caring for a child on the middle or highest care rate of DLA may qualify for Carer’s Allowance. At 16, young people move on to Personal Independence Payment.
Full details and the claim form are on nidirect at nidirect.gov.uk/articles/disability-living-allowance-children.
Language and further information
The recognised term in Ireland is Down syndrome, with a capital D and a lower cases. Person first language is encouraged, so a person with Down syndrome rather than a Down syndrome person.
Down Syndrome Ireland is the national organisation for people with Down syndrome and their families, founded in 1971, with a national office and 25 branches. Its specialists cover health, speech and language, early years, education and adult life, and it can be contacted at downsyndrome.ie. The HSE also keeps a list of recommended childhood disability websites at www2.hse.ie/babies-children/disabilities/parents-carers/useful-websites.
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