Thank you to all our members and their families who completed the Adult Disability Day Service Survey. There was a great response which highlights the importance of this issue. There were responses from 24 counties which gives us a national and clear mandate to lobby on your behalf. Here are the main findings we will use to do so:
- A strong message from our members has emerged with over 80% of adults with Down syndrome and their family members stating that they want to return to their Day Services as soon as possible.
- Adults with Down syndrome themselves clearly rejected the online-only supports, with 93% saying they were unhappy with this type of provision.
- From the comments, there is also a very strong feeling of abandonment and being left behind which unfortunately is not new. Adults with Down syndrome and their families are tired of fighting for basic rights.
“During lockdown when all family at home it was fine but as restrictions are relaxed there has been no resumption of his normal routine so this is difficult for him.”
“(We are) Worrying that we won’t have a full service back, that our children will be left behind in all this. And that that all the advances we made getting proper interesting and educational services and respite will all be gone and the battle begins again”
- Parents reported having to leave jobs, reduce hours, or apply for carers leave as a result of the lack of services. Others who are still working from home are fearful of this happening as the expectation for people to return to workplaces increases.
- This survey highlighted once again the lack of support and options available to aging parents who are still primary carers for their adult children and the lack of supports for the changing needs of aging adults with Down syndrome.
“We are all cocooners in the house and so are worried about the threat of the virus. We are also not very computer savvy so find it difficult to try to stay connected via computer sometimes.”
“My husband and I are in the older age group…and our daughter has a heart condition so we are all vulnerable.”
- The benefits of individualised funding in meeting the individual needs of adults with Down syndrome were highlighted by several respondents. Individualised funding reduces the reliance on congregated services, which are no longer fit for purpose, particularly in current circumstances.
“The personal budget did offer us a bit more flexibility in buying things that were helpful for my daughter, eg an internet package for her zoom and support for her online from someone with the skills we needed for a project”
- Whether people are going back to some kind of day service, a more individualised service, or accessing personalised budgets, there is a need for additional funding to ensure everyone receives the level of service they need.
- If day service places are initially offered on a part-time basis due to social distancing requirements, funding needs to be made available for families to access alternative supports for the remaining days.
- Apart from the immediate negative impact of the closure of services, there is a risk of far-reaching consequences. Families are concerned about the mental wellbeing of their sons and daughters with Down syndrome, while family carers are reporting exhaustion, isolation, and reaching breaking point.
“My son is now very fearful about going back. He takes 2 showers a day to ‘wash ’off the virus. We have to limit his exposure to tv and news headlines as he was getting too frightened”
“It has affected me his mother the most. It is terrible, I’ve no break, I answer the same questions 20/30 times daily, every day. I’m irritable, cranky, at night I can’t wait to go to bed to close my bedroom door for a bit of peace. And the sad thing, I can’t see any light at the end of the tunnel”
It has come to our attention that some Disability Day Services are still planning to close for the usual Summer holiday period of three weeks in August. This would be incredibly unfair to people who have struggled without these services for the last four months.
What have we done with these findings?
We have contacted the Ministers Stephen Donnelly and Roderic O’Gorman, calling on them to take action to ensure day services re-open as soon as possible with increased funding to ensure that the full service is restored.
We have also looked for proper investment and extension of the Personalised Budgets Demonstration Projects. This would help to meet the individual needs of adults with Down syndrome while reducing the reliance on congregated services and greatly reducing the risk of spreading Covid-19. It would also go a long way to ensuring Ireland fulfills its obligations under the UN Convention on the Rights of Persons with Disabilities.
We have sought meetings with the Ministers to discuss these and other pressing issues of concern to our adult members, and we would encourage you to contact your local TDs and make them aware of your concerns.
We will keep you updated on our progress.
