Down Syndrome Ireland – advocating for people with Down Syndrome, their families and professionals

1 in 444 babies born in Ireland are born with Down syndrome. Down syndrome happens when you are born with an extra chromosome inside your body. Down syndrome affects everyone differently, but it does have an impact on physical, mental, and emotional development and can be diagnosed with other conditions too. With unemployment rates at above 90% for people with Down syndrome I caught up with Aoife Gaffney, Head of Employment at Down Syndrome Ireland to see how they go about advocating for people with Down syndrome in Ireland, their families and the professionals that assist

  1. Down Syndrome Ireland advocates for people who have Down syndrome and their families in Ireland. What are the main ways that you do this?

At Down Syndrome Ireland, we provide support and services to people with Down syndrome and their families through our national office in Dublin and 25 branches nationwide. We provide ‘all-through-life’ supports to people with Down syndrome and their families across Ireland with specialists in the areas of health, speech and language, early development, education and adult education, employment and independence that enhance the lives of thousands of children and adults with Down syndrome across the country. Our team of specialists research and develop programmes & supports that can be rolled out nationally and at a local level, to enrich the lives of individuals with Down syndrome.

  1. What role do your branches play in supporting those with Down syndrome and their families in Ireland?

We have 25 branches nationwide. These branches are run almost exclusively by volunteer parents working in committees and providing their members with a wide range of services and social opportunities. Our branches play an important role in rolling out programmes we develop nationally, but they also play a vital role in providing services to children and adults with Down syndrome like SLT, OT, social activities and many more services.

  1. You recently launched the National Employment Programme to assist people who have Down syndrome in Ireland in gaining employment in the future. Can you describe what this programme entails and what barriers your community faces in gaining employment?

Our Employment Programme, which was established in 2018 has been going from strength to strength each year, with an incredible sense of awareness and willingness to employ adults with Down syndrome continuing, even post pandemic. Our Employment team supports adults to make informed choices about their careers and works to provide them with the necessary resources to seek, obtain and be successful in gaining employment. This support consists of our adult education courses, practical training partnerships in a variety of industries, specialised pre-employment and interview training, combined with ongoing support once employment has commenced. Industries in which we have successfully placed adults with Down syndrome include but are not limited to hairdressing salons, office administration (corporate, public sector, academic), retail, hospitality (hotels, bars, cafes, restaurants), leisure centres, opticians, manufacturing. We are always looking to partner with new employers and explore new exciting opportunities for adults with Down syndrome. We are currently engaging with a wide range of progressive organisations that see people with disabilities as key to making their workplaces more diverse and inclusive. 

  1. We recently saw the success of companies such as the Together Academy and The Blue Teapot Company in raising the awareness of the employment of people with Down syndrome. How do companies such as these play into that National Employment Programme strategy?

I recently met with the team at the Together Academy, and we had some really interesting and fruitful discussion about our separate programmes, but also about how our goals and visions are aligned, with the same goal always in mind, to enrich and add value to the lives of those with Down syndrome, through education, training and meaningful employment. We believe that with tailor made programmes, specific skills training onsite and a supportive team with a positive attitude, we can achieve our goals for adults with Down syndrome and in turn they can show their communities their abilities and capabilities. It is fantastic to see other organisations with similar goals. It helps the visibility of individuals with Down syndrome in the workplace, spreads awareness, opens up opportunities, and hopefully over time it can show the Government that programmes like ours add enough value that warrants long term and sustainable funding.

  1. If a company was interested in employing someone who has Down syndrome, what should they know before employing them and what should they do to employ them?

If a company is interested in employing a person with Down syndrome, take a look here at our information pack for employers that we have developed to help give an overview of our programme, process and goals. Companies that employ people with Down syndrome report that those employees are committed and motivated, and often only need an opportunity to demonstrate their capabilities. The positive impact on the person with Down syndrome is substantial. Working helps improve confidence, increase social connectivity and integrate the individual into the local community. If you are an employer, we ask you not to make assumptions about what a person with Down syndrome can do. We ask you to consider the skills, abilities and aspirations of each individual. We can provide support to you by looking at job roles and responsibilities in your organisation that would provide meaningful work for an adult with Down syndrome. We can also provide support around contracts and any materials that may need to be written to support the individual and employer training to ensure awareness around working with adults with Down syndrome. If you are an employer who wishes to employ a person with Down syndrome, we are here to support you. Please contact me on and I would be delighted to work with you.

  1. Being a charity you require support from the public. What are your biggest fundraising campaigns? What other strategies for fundraising do you find works best?

With less than 20% Annual State Funding, Down Syndrome Ireland is heavily reliant on the generosity of the general public. Our biggest fundraising campaigns are centred around World Down Syndrome Day each year (March 21st) and include Lots of Socks and the Purple Run. We also run a number of challenge events and campaigns each year e.g. 21 Day Challenge, Go For Gold, Abseils, walking the Camino and climbing Kilimanjaro etc. In addition, we rely on corporate partnerships, schools, community groups and individuals for fundraising activities and donations throughout the year. The Pandemic has changed fundraising over the past two years and we have adapted with a more digital and online approach, with social fundraising playing an increasingly important strategic role.

  1. How has your team grown in the past 5 years? Do you have any policies around hiring those who have Down syndrome joining your team?

Our Member Support Team has substantially grown over the past 4-5 years. We have fulltime experts working to support families and their family members with Down syndrome from birth, through early years, primary & post primary education, and adult life. Our employment team is relatively small, with 2 fulltime team members working on our National Employment Programme, but we hope over time & with more funding in the future to grow our teams regionally and locally, to support our branches more nationwide and of course adults with Down syndrome locally when securing jobs too. We have a colleague with Down syndrome, who works as part of the administration team in our national office. Ross has been working with us for over 15 years and he is a valued member of our team who carries out jobs that are not only meaningful to him, but also to our extended team in the national office. Recently we have developed a new pilot employment programme in our charity shops. The aim of this programme is to train adults with Down syndrome in retail skills and to provide paid employment in our charity shops in Dublin. Our Cork & Kerry branches also provide paid employment to adults with Down syndrome in their charity shops.

  1. How did the pandemic affect the organisation and your community? Are there any positives you can take from this time?

The Covid-19 pandemic left many adults with Down syndrome more isolated and resulted in job losses and limited options to engage with further education and other life activities. In response to members’ concerns and in order to provide support, we developed “Ability Online,” a ten-week adult education course that was delivered remotely and combined online tasks and group Zoom discussions. The online workshops aimed to equip adults with the skills to live and work independently, while the Zoom sessions aimed to support social connections and friendships. This course was a huge success, and it gave adults with Down syndrome a weekly social outlet. In the time throughout the pandemic over 200 adults with Down syndrome took part in the courses. Although many lost jobs during the pandemic, it has been so refreshing to see so many employers taking their employee with Down syndrome back to work, like any others, and also new employers coming on board.

  1. Are there any other organisations in Ireland that you’re a big fan of?

There are many organisations who are doing fantastic work nationwide, with similar goals to us at Down Syndrome Ireland. From 2018-2021 we received European Social Funding, along with 26 other organisations. Collectively we called ourselves “Ability 27”, and we still continue to collaborate ideas regularly. You can find out more about Ability 27 on this link