National Survey 2026 Findings
We would like to thank all of our members who gave their input into our survey on education, communication, therapies, housing, health, ageing, and future planning. Your feedback will help strengthen Down Syndrome Ireland’s case for stronger national planning and accountability; better therapies and communication supports; fair and consistent access to education; improved housing, health and adult supports; and better future planning and ageing supports.
The key themes from the results were:
Future Planning & What Happens When I’m Gone
- This topic was the most frequent and urgent concern. Parents expressed a profound, constant fear regarding who will care for their children once they pass away.
- The need for a clear, legally and financially secure ‘Roadmap’ from birth to old age.
- The need for supported independent living options and residential places that are planned before a crisis occurs, rather than as a reactive measure.
Consistent, Lifelong Access to Therapies
- The current system (specifically CDNT/HSE) described by many as ‘broken’ or ‘regressed.’
- Weekly or bi-weekly Speech and Language Therapy (SLT) was a top priority, to ensure the basic human right of communication.
- Some said that Google is their most consistent support, and they are tired of having to prove their child is “bad enough” to qualify for help.
Financial Security & Means Testing
- There is a strong demand to abolish the means test for the Carer’s Allowance.
- Families feel penalised for working hard, noting that they are “squeezed” out of allowances but still cannot afford the private therapies or equipment necessary to support their children.
Education
- A call for more special school places, particularly at the secondary level, more information on their options, and better-trained SNAs in mainstream settings.
Meaningful Employment
- Meaningful work was mentioned several times. Some comments mentioned a shift away from ‘recreational’ day centres, described by one parent as “hanging around eating junk food and bowling.”
- A need for more meaningful, paid employment and life-skills training.
Statistical findings from the survey:
Available Supports
- 69% of people said that supports are too dependent on family advocacy.
- 61% of people said that supports are fragmented between services.
- 58% of people said that supports are inconsistent across regions.
- 65% of people said that supports depended heavily on their own advocacy efforts.
- 57% of people said they had to seek private supports.
- 92% of people believe Ireland needs a coordinated national framework for Down syndrome supports across education, therapies, health and adult life.
Education
- 44% of people said there was no appropriate special classes in local schools available for their child.
- 29% of people think a Mainstream Class with support would best suit their child.
- 24% of people think a Moderate General Learning Disability Class would best suit their child.
- 24% of people think a Mild General Learning Disability Class would best suit their child need.
- The most prevalent issues regarding school were lack of appropriate supports (38%), difficulty accessing curriculum (27%), and exclusion from activities (20%).
Speech & Language Therapy
- 83% of people have experienced delayed speech and language therapy.
- 82% of people said their child/family member experiences significant speech, language or communication difficulties.
- 66% of people had to seek private supports.
- 65% of people have experienced delayed occupational therapy.
- 68% of people said that intensive speech and language support require urgent national action.
- 48% of people said that faster therapy access requires urgent national action.
Housing
- 96% of people are not confident that appropriate housing and supports will be available in adulthood for their family member.
- 87% of people believe there are no sufficient housing and supported living options in Ireland.
Future Planning
- 88% of people are extremely or very concerned are you about future supports for their child/family member.
- 86% of people feel Ireland currently does not have adequate supports for older adults with Down syndrome.
- 80% of people said that independent living supports are the greatest concern for the future.
- 80% of people said that ageing parent/carer concerns are the greatest concern for the future.
- 71% of people said that long-term care planning is the greatest concern for the future.
- 70% of people have received no support or guidance relating to future planning.
- Only 1% of people said that they received comprehensive support or guidance relating to future planning.
We will use these findings to fight for stronger national planning, accountability, and fair access to education, therapies, housing, health, and adult supports. These insights will directly inform our Cross-Party Oireachtas Group on Down Syndrome and drive the continued national rollout of free Speech and Language Therapy through the Glór programme.