Ms Anna Budayova:

I thank the committee for having me appear before it. It is beautiful here in Tuam. We do not get much sun so it is a fantastic day today. I am a mother of five beautiful children. My baby Esther was born with Trisomy 21 and an atrioventricular septal defect, which is a serious heart condition. Only last week she was diagnosed with deteriorating eyesight. This means she will need to wear glasses from now on. Unfortunately she also has other medical complications. I ask the committee to end the means test for carer's allowance and change the laws for parents such as me, especially when a child is born with a lifelong disability. There are huge gaps in the system. Article 41.2.2° of the Constitution states, "The State shall, therefore, endeavour to ensure that mothers shall not be obliged by economic necessity to engage in labour to the neglect of their duties in the home."

We came to Ireland in December 2007 when my husband's job moved him from another EU country to work here on a project. We have been working here since then. We never claimed social payments or benefits here. When things got harder in Dublin with rising costs, we moved around the country several times to get better jobs and more stability for our family. Knowing our family was growing, we have not been reckless with money and saved as much as possible for a house deposit. We changed jobs and schools for our children and left friends behind. It took us more than ten years to save money for a deposit to be able to buy in rural Ireland, which is where we moved in 2017. My husband had to commute to work daily.

We have worked hard to provide for our family over the years. To get these salaries we studied and paid for education several times. We have never abused the system and we are now being punished for this. A Down's syndrome diagnosis accompanied by additional health conditions requires more appointments, more diesel, more travel, more tools, more parking, more babysitting, more private therapies, more glasses, more money and no break. The costs associated with this care are continuously rising. If people have more children, as we do, it means additional childminding costs when we are away. Even basic day-to-day expenses, such as food, heating and bills, are very high and will rise in future. It is only May and I am already worried about how we will cover September, secondary school and the boys in primary school. Our financial situation is causing tremendous stress for the family and pressure on our marriage. Only yesterday we had to travel to the hospital in Crumlin for an early cardiology appointment. This meant leaving our other four children with a childminder at 5.15 a.m. to be in Dublin by 8.15 a.m. for the appointment.

When my daughter Esther was born last June she was in hospital for several weeks. I commuted to her every day. After my husband had to go back to work, we had to organise someone to care for the children. These were all high costs. I was expressing breast milk every three hours, day and night, for five and a half months. Directly after expressing, I was nasogastric, NG, tube feeding my Esther every three hours with the breast milk as this was the best recommendation from her cardiologist. In total, I spent 35 days just expressing and NG tube feeding Esther during the first six months of her life. I was exhausted on every level, as committee members can imagine. Nevertheless I did it because it was the best for her.

My work as a full-time carer is not valued by the Irish Government, which is very wrong and shocking considering the Irish Constitution. Caring for a baby with a lifelong disability is extremely demanding - physically, emotionally and financially. To just say a person is over the limit without any regard for essential expenses associated with this care is cruel and puts families in a desperate situation.

I have only one wish - for Esther to be healthy. I do not want hospital appointments, hospital stays, therapies or fights with Departments. However, I do not have this choice. Now, I feel I am being punished for accepting and loving my child, who is not perfect in the eyes of this world. If members met my Esther, they would see she is lovely. She is a beautiful child.

I work 24-7 with love to care for my Esther. I want to give her all the possible opportunities in this world. Without money, however, it is impossible. My husband pays huge taxes each month yet we are not able to get help when we need it just because we are not abusing the system. Every mother or father who cares for a special needs child since birth should be paid the carer's allowance in full - no questions asked. As if it was not hard enough for parents like us. Our lives are changed forever. No-one asked if we wanted it. Last November, I was awarded a carer's allowance of €12.50 per week. Two weeks ago, however, I received a letter from the Department stating that this is being reviewed, and that this payment might be removed and I will have to pay back whatever I received.

I understand that the carer's allowance is means-tested. However, I would like to highlight that it is not reasonable to accept means-tested calculations based on gross income and not consider other necessary expenses such as a mortgage, car repayment and other expenses linked with additional health complications if a person's child is sick. There are other expenses our family also incurs. We do not have a medical card or any other support. We are completely and 100% dependent on one salary alone. I have no idea how I can support my other children in their development going forward. It is impossible to survive like that for more than a few months if one has savings.

I am a qualified medical scientist but cannot work due to Ester’s care needs. How ironic that we are hardly meeting our survival costs and using our savings with this mean test. There is no way for a family in our situation to set any money aside for life or health emergencies, a pension or recreation to alleviate pressures linked with being a full-time carer. This journey is so lonely. It is important because from a long-term perspective, we are only humans and we have no break. We have no weekend and no full night's sleep. I want to be available for my family in good health. I am not blessed enough to have close or extended family around to help me, even a little bit, or provide a safety net for me or my children. Healthy children are a little different, and I know that because I have four healthy children. They could grow up with less and one day, please God, they will all be able to take care of themselves and contribute to the system and the whole society. Esther will not be the same, however. Money is important.

It has to be recognised that lower-middle-class families who bring special needs children into this world will not be punished for working hard over the years and not abusing the system. We are the backbone of society - all the working families - creating value for the future. I thank members for their time and attention. Have a lovely day from sunny Tuam.