Carers allowance

My son, David, is one of the many children who require constant care, but I consider myself lucky—he’s healthy and not on medication. Yet, the challenges are profound, ongoing and constant. Carer’s Allowance, while appreciated, only touches the surface of what I truly need.

Carer’s Allowance allows me to work 18.5 hours a week. During those hours, my phone is never out of reach because David might call me up to 50 times a day. Each call is a necessity, not a choice.

On another note, what if I wanted to work full time, what if I wanted a career, what if I loved to work and be part of that community. I now have no choice as my maternal roll overrides everything else. That identity is gone.

What do most people do when they finished work?

Once my official work hours are over, my real job begins. David needs my help with everything—meals, hygiene, and companionship. I often fall asleep to the sound of his voice, grateful he can talk, but always on duty. Unlike many, I can’t take a walk, meet friends, or even get my hair done without arranging for someone to stay with David.

The Irish Wheelchair Association offers some respite, they are the best lifeline I could have, giving me a few hours on weekends to catch my breath, but these moments are fleeting.

Discussing Carer’s Allowance is important, but it’s crucial to understand that it’s not a magic fix. Yes, it’s a lifeline, but it’s not enough. My fight extends beyond these hours to securing essential services for David—physiotherapy, occupational therapy, and even a new wheelchair, a battle that’s been ongoing since January due to bureaucratic delays. It is causing me great stress YET AGAIN!!

To deal with an organisation who are meant to support me, well, that’s not true; it doesn’t help anyone by someone in an organisation saying they have no therapists when my son is left on the sidelines YET AGAIN. (sorry for ranting but I know only you as a parent of a child with additional needs understand) sometimes I wonder what the system needs, is if for me to break down !! then what happens!!

Many parents like me work around the clock, and even though David sleeps through the night, allowing me some rest, the constant vigilance takes a toll on my health. Then how much Carer’s Allowance is needed to pay someone to do my job.

I believe that Carer’s Allowance should not be means-tested.

We need more support, more understanding, and more comprehensive resources to truly care for our children and ourselves. Carer’s Allowance is a step in the right direction, but we must acknowledge the relentless nature of our roles and advocate for better provisions, recognition for all Carers and take away the worry of means-testing.