Ms Niamh Ryan:

I thank members for the invitation to appear before the committee. I am mother to twin boys who will be 14 years old in June. My husband is a mid-grade public sector employee. I am also a full-time carer for our son Liam, who has a life-limiting condition. He has severe spastic quadriplegic cerebral palsy. He is a wheelchair user, is tube fed and has epilepsy, global developmental delay, scoliosis, hip dysplasia, cortical visual impairment and chronic lung conditions.

He is on 28 doses of 18 different medications and four nebulisers every day. This is when he is well. It is a whole different story when he is sick. Liam requires full assistance for all of his needs and personal care.

I have never received full carer's allowance because my husband works but we managed. However, in March my carer's allowance was slashed by €90 per week. With inflation rising as it is, this could not have happened at a worse time. When I brought up the fact the carer’s allowance I get equates to 78 cent per hour, I was told that I should not look at it as remuneration. I find this very insulting because being a carer is a job and is a very stressful job at that. I work 24 hours a day, seven days a week with no days off and no holidays. When family carers are told that what we do is worth so little, it really makes us feel quite worthless. I do not have the luxury of dwelling on my feelings because the cold hard fact is the current system of means-testing carer's allowance is extremely unfair and puts families under extreme pressure financially.

If there has to be a means test it should at least be fair. It is not right that income is the only thing considered and that outgoings are not taken into account. The only outgoing that is considered is an allowance of €15 per week for travel, and we all know how far that gets us these days. It does not matter that, like many other families, we have a huge mortgage. We had two salaries when we bought our house but I had no option but to give up my job to look after Liam. It does not matter that we had to take out a big loan to adapt our house to cater for Liam's needs. We did receive the house adaptation grant but it did not come close to covering the cost of the build. It does not matter that we had to take out another big loan to purchase a wheelchair accessible van to be able to take Liam to all of his hospital appointments and to make sure he is not a prisoner in his own home. It does not matter that while energy costs are at an all-time high and still rising, Liam’s medical equipment has to be left on and charging 24 hours a day. This equipment includes an oxygen concentrator, suction machines, a BiPAP machine, an oxygen saturation monitor, an air purifier, a hospital bed, an air mattress, a ceiling hoist, a nebuliser machine and feeding pumps.

It does not matter that our heating has to be on more than most as Liam misses a lot of school through illness. Indeed, he only returned to school three weeks ago after cocooning at home since the start of the pandemic and he has already missed a few days due to a chest infection. It does not matter that our light and heat are on more than most when we have nursing support at night. It does not matter that Liam's clothes are more expensive because they have to be adapted for his feeding tube and wheelchair. It does not matter that we had to purchase expensive medical equipment, including a ceiling tracking hoist and changing bench, as these were considered luxuries by the HSE. Not only did we have to find the thousands of euro to purchase this equipment but we now have to bear the costs of servicing and maintaining them. It does not matter that we have extra waste disposal charges due to all of the medical waste and incontinence wear. It does not matter that we have to pay charges for having prescription drug sheets written up every six months so that we can avail of our home nursing package. None of these things matter to the means test but they matter greatly to us as we struggle to pay for them.

At the end of the day, I have no choice but to be a full-time carer for Liam, so working part-time outside the home is just not an option for me and many other family carers. As for the disregard for savings of €50,000, that is just simply the stuff of fairy tales to us. Despite this and how difficult, stressful and exhausting it is, I am happy to look after our beautiful happy boy and I dread the day when I will not have to do it anymore. My family and many like us need help and support now. We do not need to be told, as we so often are, that family carers are valued by our Government. I certainly do not feel valued. There are substantial additional costs involved in caring for a person with complex medical needs and I ask the committee to look at these seriously and consider making meaningful changes to the means test so that a family's considerable additional outgoings are taken into account. This would truly help families who spend so much of their time worrying about the health and survival of their loved one and could really do without these extra financial worries and pressures. I thank the committee.