Down Syndrome Ireland members outline urgent issues with Progressing Disabilities

A huge thank you to everyone who participated in our survey on access to therapies. Here you will find an overview of the survey findings.

There is nowhere in the country where children are getting ready access to all of the therapies they need to support them to reach their potential.

Almost half of children aged 0-18 had no therapy of any kind in the last year. While the situation varies between one CHO area and another, there is nowhere where the system is functioning well for children with Down syndrome and their families.

This survey took place in the context of many services moving to the ‘Progressing Disabilities’ model, which is intended to streamline pathways and improve access to services, however, there is little confidence amongst you, our members, that the intended outcome will be achieved.

The evidence presented in our report highlights that while this is a longstanding issue, the situation has been worsened by the pandemic.


What we are doing

In response, we have:

  • highlighted the survey findings to the Joint Oireachtas Committee on Disability Matters; You can read the full presentation;
  • contacted the Minister for Disabilities and political leaders seeking urgent meetings;
  • contacted the HSE CHO Disability Managers seeking urgent meetings;
  • been working to highlight the issue in the media (Thank you to the large number of parents who have said we can contact them.)
  • liaised with other disability organisations.


For children with Down syndrome, missing out on the early and consistent benefits of necessary therapies has lifelong negative consequences but it also has consequences for our health service in terms of increased need for health and social care services across the lifespan.

Ireland cannot continue to fail to deliver vital health therapies in violation of the UNCRPD. A short-term solution is needed while longer-term policy and implementation issues are being worked out, particularly in light of the delays caused by the pandemic.

We will keep you updated on our progress.



Over half of children with disabilities not receiving any services, new survey reveals

We are continuing in our work to highlight and raise awareness of issues being faced by children in accessing vital therapies. Our CEO Barry Sheridan was interviewed in an article that appeared in The Journal on 11/3/2022.



DSI to appear in front of Oireachtas on Progressing Disabilities

Down Syndrome Ireland continues in its lobbying of Government on the substantial issues being faced by children with Down syndrome in accessing vital services, appearing in front of the Joint Committee on Disability Matters to discuss Progressing Disability Services on Thursday, 26 May 2022 at 9:45 am.



DSI Statement to the Oireachtas on Progressing Disabilities

‘The state was failing children 51 years ago when Down Syndrome Ireland was formed, and they’re still failing them now.’ – This was the damning conclusion of the presentation by DSI Member Support Team Leader – Nicola Hart at the Joint Oireachtas Committee on Disability matters on the 26th of May, 2022.

Latest News

Changes to SET hours – DSI, AsIAm and Inclusion Ireland call for pause

22 Feb 2024

Down Syndrome Ireland expresses concern on proposed changes to SET hours

09 Feb 2024

Report by the Joint Oireachtas Committee on Disability Matters

06 Apr 2023