Down Syndrome Ireland Marks 50 Years with The Upside

Down Syndrome Ireland has today kicked off its 50-year anniversary with a new campaign, The UpSide that highlights the value of inclusion for people with Down syndrome in Ireland.

Speaking at today’s launch, Barry Sheridan, CEO of Down Syndrome Ireland said, “The Upside aims to highlight just how much further we as a society have to go to call ourselves truly inclusive, despite the tireless efforts of so many during the past 50 years. It will show both the shortcomings and progress of living with Down syndrome in Ireland across four aspects of life: health, education, the workplace and life in the community. “

A special report, The Upside – Life with Down syndrome has been released as part of the campaign. Fresh data from a new survey commissioned by Down Syndrome Ireland and conducted by Empathy Research shines a light on the gaps between public attitudes and societal aspirations towards inclusion and the harsh realities of life for people with Down syndrome and their families. Currently, Ireland has the lowest rate of employment and one of the highest poverty rates for people with disabilities in the EU.1

“We need to change this. In the past 5 years, Down Syndrome Ireland has submitted over 20 submissions to a wide and varied range of Government consultations. We have participated in numerous pilot programmes, but significant gaps to inclusion remain. The time for discussion has passed. Now it is time for action”, he said.

The charity has outlined #21Demands for this Government to bring about real change in achieving disability rights in this country. These demands include calls for full implementation of already adopted legislation and policies, as well the need for urgent updating of long-standing laws which are out of date, irrelevant and unfit for purpose.

Mr Sheridan continued, “For example, there is key legislation such as the 2015 Assisted Decision-Making (Capacity) Act, that has not been fully implemented. This leaves vulnerable people having their capacity challenged using the 1871 Lunacy Act, a 150-year-old law. It is unacceptable and shocking that it is still in place. Let’s make it the last anniversary of this law.

“On our 50th birthday, we re-dedicate ourselves to a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realise their life’s aspirations and become valued members of a welcoming society.”

Survey Results

Health

80% of the public believe waiting times should be no longer than six months for someone with Down syndrome to receive their health assessments, tests and start their therapies for services such as speech and language, physical and occupational therapy.

The Reality

In pre-pandemic Ireland in 2019, the average number of therapy sessions for a person with Down syndrome was five. Not five sessions a week, or five sessions a month or five sessions a term, but five sessions in the year. More than half of the people who responded to a recent DSI survey of members had been offered no therapy at all.

Education

There is strong public support for higher education access for people with Down syndrome. 87% of adults agree that there should be supports for adults with Down syndrome to engage in further and higher education.

The Reality

71% of adults with Down syndrome who have already left school would like to attend further education. Before the pandemic, just 29% of adults with Down syndrome were doing some kind of course many of which were delivered in a health setting by care staff.

Employment

On average, the public believe that 20% of people with Down syndrome are currently in paid employment. Many people believe a wide range of factors are needed to facilitate greater paid employment, and almost 75% of respondents with a family member with Down syndrome said the Government needs to provide greater supports.

The Reality

Meaningful employment for people with Down syndrome is approximately 6%, despite the fact that many more people would like to work.

Community

86% of the public want greater inclusivity, but only half of respondents believe there the opportunity for people with Down syndrome to be fully integrated into the wider community.

When asked if Ireland is a fully inclusive society for people with an intellectual disability, the results were quite stark: health (23%); education (16%); community/independent living (13%) and the workplace (9%).

60% of the public believe people should have the choice between using the services of a disability service provider or buying different supports if that is what they need and want, and nearly half (47%) of people agree that families of people with Down syndrome should have control over how their funding is spent.

The Reality

There are legislative, structural and cultural barriers that impact people with Down syndrome, preventing them from living their lives as they choose. Down Syndrome Ireland is calling for an all Government approach to implement our #21Demands – these demands will go a long way towards achieving equality for people with Down syndrome in Ireland.

60 Foot Street Artwork Unveiled

A dramatic piece of street artwork by renowned artist and activist Joe Caslin in Dublin City Centre was also unveiled today. The 60ft piece features 21-year-old Amanda Butler from Mullingar, which occupies the gable end of a building at the junction of Harcourt Street and Clonmel Street in Dublin. Amanda lives with her family on a farm in Mullingar, enjoys cooking, is an excellent swimmer and loves music – particularly Westlife and Bruce Springsteen. She’s currently working on developing job skills through her college and hopes to find work in a hospitality, retail or helping to take care of others in childcare or adult daycare service.

Excited to be part of the campaign Amanda says, “I am so excited to be part of Down Syndrome Ireland’s anniversary. I am grateful I have been given the chance to shine.”

The artwork is part of a wider programme of activities as part of the charity’s new campaign, The Upside which focuses on four key aspects of life for a person with Down syndrome: health, education, employment and life in the community.

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