Down Syndrome Ireland Health Survey 2019

Difficulties in the HSE are affecting all of our members, whether it’s long waiting lists for hearing tests or sleep studies, difficulty accessing therapies, or lack of support for people who are ageing. For the next two weeks there will be a survey circulating, so that you have a chance to tell us how the HSE failures are affecting the person in your family who has Down syndrome.

We will use this information to lobby for improvements and accountability in our health service. We need to improve services now, because the failures of care we are hearing about from you reduce quality of life, and increase both social and financial costs in the longer term.

With your permission, we might contact you to learn more about the issues which are particularly impacting on your family. We will gather information about which services you are waiting for, and how long you have to wait. If you don’t want to be contacted, that’s fine too. You can fill in the survey anonymously, so that the difficulties you are experiencing can still be counted.

The most important thing for us is that as many people as possible fill in the survey. We know you get surveys about everything these days, and it can get frustrating when you take the time to give feedback but nothing changes. We can’t promise to change anything overnight, but we can raise the issues and make them key lobbying points over the next year.

As we continue to lobby, we may come back to you with more detailed surveys about areas like early intervention or adult services, but for now we are just looking for some basic information on two main areas:

  • Have you been waiting a long time to access any health service? (And if so, what type of services?)
  • Have you been waiting a long time to access any disability or social care service? (And if so, what type of services?)


The survey is short, taking no more than 5 minutes to fill in.

We hope that you will help us by giving us the information we need to effectively lobby for change.

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