Ms Moira Skelly:

I thank the committee for the opportunity to speak before it. I am a full-time family carer for my daughter Ciara. My husband Paul had to take early retirement in order to help me care for Ciara as her needs are so high and she requires 2:1 support.

Caring is not something I chose. I did not wake up one morning and decide that I wanted to be a carer. Life happened. Our beautiful daughter Ciara was born profoundly physically and mentally disabled. Ciara has very complex medical needs. She has cerebral palsy, epilepsy, autism and global developmental delay. She is PEG-fed, non-verbal, a wheelchair user and incontinent. She requires 24-7 care.

Life as a family carer can be rewarding and joyful but it has also been very difficult. We have to fight and wait for everything - for a diagnosis, therapies, assessments, appointments and appropriate school and adult day services. Everything we have had to do has been a battle, and it should not have to be.

On top of these daily battles, we are forced to undergo degrading financial scrutiny in order to justify our right to receive carer's allowance.

Filling out that form was soul destroying, humiliating and felt so invasive. I felt like I was begging for something that I should be entitled to. I had to give up work full-time to care for my daughter. My career had to be abandoned. A system like this forces many family carers into poverty. It does not recognise or value the work we do. Means testing caused so much stress and stigma for family carers like myself, compounding the exhaustion and pain we already feel.

To add insult to injury, the means test does not take into account the cost of caring in a household like ours. It does not allow for the cost of buying an adapted car, transport, medical expenses, special food supplements, additional heating and electricity required to heat our home, run Ciara’s hoist and charge her electric chair. It is also very difficult to keep her room warm all of the time because she does not move and she feels cold, even when the rest of us are feeling warm. It does not recognise the hidden costs of caring and the impact it has on our mental and physical health and well-being. We are exhausted and sick of fighting. I mentioned the word "begging" earlier. Here I am today, again begging our Government, politicians and officials to listen, act and abolish the means test for the carer's allowance, showing us they really do recognise and value the work that we do every day.