Shine a Light on the Parents Fighting for a Future Before They Die

A campaign calling for urgent action to support adults with intellectual disabilities and their families has been featured on Shine a Light on South East Radio.

The Before We Die campaign was founded by parents who say there is a growing crisis facing families who are caring for adult children with significant support needs as they worry about what will happen when they can no longer provide care.

Founder Tony Murray joined presenter Siobhan Murphy to discuss the campaign which is calling on Government to ensure appropriate housing, supports and transition plans are in place before families reach crisis point.

Tony, who is 71, cares for his 42-year-old daughter Eva alongside his wife Susan. Eva has Rubenstein-Taybi syndrome, a rare genetic condition and requires lifelong support.

He said many parents are living with the fear that when they are no longer able to care for their sons and daughters there may be no plan in place for their future.

The campaign is calling for a new approach to housing and supports with planned transitions that allow adults with intellectual disabilities to move into suitable homes while remaining connected to their communities.

Also speaking on the programme was Johanne Powell, President of the National Council for Family Carers Ireland, who shared her own experience as a full-time carer for her daughter Siobhan who had a rare chromosome condition and sadly passed away in 2020.

She said the number of adults waiting for residential placements has increased significantly in recent years with 87 people currently on the contingency waiting list in Wexford.

Johanne said families are looking for basic supports — a safe home, appropriate care and a plan for the future.

The Before We Die campaign is continuing to lobby Government for action with a national meeting planned later this year to bring families together and put further pressure on decision-makers.

You can listen back to the full conversation with Tony Murray and Johanne Powell on Shine a Light with Siobhan Murphy on the South East Radio website and podcast platforms.