A young Irish man with Down syndrome has played a key role in securing a ground-breaking new law in England for people with Down syndrome.
Galway man Fionn Crombie Angus, who has Down syndrome and is 26 years old, was asked by the National Down Syndrome Policy Group (NDSPG) in the UK to help champion the Bill. He and his father Jonathan run a social enterprise named Fionnathan Productions.
“They headhunted me, and I’ve been working with the group for over a year now. People often call what I do self-advocacy, but clearly that’s the wrong term. Sure, I self-advocate – so does everyone. But this law will only benefit UK citizens. I’m doing it for my friends,” Fionn said.
Fionn appeared on RTE news earlier this week talking about his work.
DSI CEO Barry Sheridan said that while this is a step forwards in terms of rights in the UK, people with Down syndrome in Ireland are long overdue a rights-based approach to services.
Speaking following the passing of the bill, Mr Sheridan said:
“While Ireland has signed up to the UNCRPD, state services are far from what is needed to ensure that all people with Down syndrome get the support they need to achieve a decent quality of life. They are being let down by the state at every stage, from the lack of early intervention to the absence of individualised funding in adult life to allow people to live the life they choose.”
“Signing up to the Optional Protocol of the UNCRPD would be a step forward in strengthening rights, as would fully enacting domestic legislation such as the EPSEN Act. We need an urgent move to strengthen the rights of people with disabilities in Ireland.”
The biggest challenge facing our younger members is a lack of essential therapy services, with the failing Progressing Disabilities programme badly letting them down.
He added: “For our members to have the chance to reach their potential and to live the lives they choose, their rights to effective state services which meet their changing needs across the lifespan need to be strengthened. People with Down syndrome and their Families should not have to constantly battle or fundraise for services which should be provided as a fundamental human right.”