For thousands of families across Ireland, one question never goes away: “What will happen to my son or daughter when I’m no longer here?”
In a moving episode of Disability Matters, John Comiskey speaks with Tony Murray, co-founder of the Before We Die Campaign, a family-led movement calling for urgent government action to provide safe, supported housing for adults with intellectual disabilities.
Unlike many disability campaigns, Before We Die is led not by organisations, but by parents and families who have spent decades caring for their children and now face an uncertain future as they grow older.
A Crisis Hidden Behind Closed Doors
Tony explains that more than 2,300 adults with intellectual disabilities are currently living with parents aged over 70, while hundreds more rely on carers in their eighties.
For these families, every passing year brings increasing anxiety.
“Parents aren’t asking for luxury. They’re asking for certainty. They simply want to know their son or daughter will have a safe home and proper support when they can no longer provide that care.”
The campaign’s name says everything.
Parents want to know their children will have somewhere to live before they die—not afterwards, when emergency decisions are forced upon families already experiencing loss.
Planning Before Crisis Happens
One of the strongest messages throughout the interview is that this situation is entirely predictable.
Families know they will not be able to provide care forever.
Yet too often, planning only begins when a parent becomes seriously ill or passes away.
Tony argues that Ireland needs to move away from emergency responses and instead invest in long-term planning.
“This isn’t about reacting to a crisis. It’s about preventing one.”
A Home Means Independence
The conversation highlights that the campaign is not simply calling for more residential places.
Its vision is broader.
Adults with intellectual disabilities deserve the opportunity to live in homes within their own communities, supported according to their individual needs, where they can enjoy independence, dignity and meaningful lives.
Housing should never depend on whether a family reaches breaking point.
Families Are Asking for Peace of Mind
John and Tony discuss the emotional burden carried by ageing parents who often lie awake wondering what will happen after they’re gone.
Many have devoted their entire lives to caring for their children.
Their greatest wish is remarkably simple.
“Parents want peace of mind. They want to know their child will be safe, supported and surrounded by people who care.”
Speaking Directly to Government
The Before We Die Campaign has brought these concerns directly to national decision-makers, including Government ministers and the Oireachtas Disability Matters Committee.
The campaign has also received support from public representatives across political parties.
Its central message remains clear:
Every adult with an intellectual disability deserves access to appropriate housing before a family crisis occurs.
More Than Housing
This conversation reminds listeners that housing is about far more than bricks and mortar.
It is about dignity.
It is about independence.
It is about protecting families from avoidable heartbreak.
And above all, it is about ensuring that no parent spends their later years living with the fear of what will happen when they are no longer able to care for the child they love.
More: https://www.beforewedie.ie/
This interview aired on Disability Matters on 92.5 Phoenix FM, a programme produced by Blanchardstown Centre for Independent Living (BCIL).
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Compiled by Valentyna Hordiichuk