Anna and Esther. C: Anna Buday

Mum of baby with Down Syndrome has Carer’s Allowance removed 

A mum of an 11-month-old child with special needs says the Government should end the means test for a Carer’s Allowance and change the laws for parents when a child is born with a life-long disability. 

Anna Buday and her husband George welcomed their adorable baby girl Esther into the world last June. Baby Esther was born with Down Syndrome and a heart defect known as AVSD, as well as other health complications. Anna says that since Esther’s birth 11 months ago, they have discovered that there are huge gaps in the system, making life extremely difficult for parents of a child who has additional needs.

She was shocked to learn that she would not be able to claim a Carer’s Allowance even though she cannot work outside the home because of Esther’s care needs – because the maximum income a family can earn to claim the support is €750 a week or €39,000 a year – well below the average Irish wage of €49,000.

“The means test ignores the fact that a family might have other children, that my husband works extra hard because we have extra bills when a child has special needs – and then sets a limit on the amount we can earn which is almost 20% below the average wage,” Anna told Gript.

 “It makes no sense, and it feels like we are being punished for working hard, and for having a baby with special needs. The government pays lip service to people with disabilities but then makes it impossible for us to live, and is denying my family the right to Carer’s Allowance even though I am a full-time carer.”

When Esther was born last June, the little girl spent the first few weeks of her life in hospital. Anna, mum of five, commuted to see her newborn baby daily, and when her husband had to return to work, the couple had to pay a significant amount of money for childcare for their other four children, aged 13, 9, 8 and 6.

“I commuted every single day. After my husband had to go back to work, we had to organise someone to care for the children in the meantime. These were all high costs.”

In November, Anna was awarded a very small Carer’s Allowance of €12.50 a week. However, two weeks ago, she received a letter informing her that the payment could be cancelled and she will be forced to pay the allowance back because she does not qualify based on the means test for the payment. The mum of five says that the means testing for the payment is unreasonable, punishing hard-working families while failing to take into account necessary, every-day expenses.

“The explanation was that this was a means-tested payment,” she says.

“I realise 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 the additional expenses of having a child with special needs on top of the mortgage, car repayment, and necessary dental appointments and other payments.”

Anna worries about being able to support the development of her other children, and says the lack of help puts her in a position where she cannot afford to send them to the extra-curricular activities they enjoy.

“I have no idea how I can support my other children in their development as I am not able to pay for extracurricular activities now, plus expenses linked with additional health complications. It is impossible to survive like that for more than a few months.

“Every mother or father who has cared for a special needs child since birth should be paid the Carer’s Allowance in full, no questions asked. If it was not hard enough for parents like us, our lives are changed forever.”

Esther with her brothers and sister
Esther and her big sister wearing matching blue and yellow bows to raise Down Syndrome awareness

Anna, a qualified medical scientist, cannot work at the moment due to Esther’s care needs. Her husband works full-time in IT and earns a gross income above the means test limit to support a family of seven.

Of the financial difficulties imposed on the young family by the system, Anna says: “We are hardly meeting our survival costs and using our savings. We have a mortgage and significant medical costs due to Esther’s condition, however, these costs are not considered in the means test for Carer’s Allowance.”

Because of Anna’s husband’s income, she does not qualify for Carer’s Allowance  nor does the family qualify for a housing adaption grant, Medical Card, or the Disabled Drivers Passengers Scheme.

“I would also like to highlight that there is no way for a family in our situation to set any money aside for life or health emergencies, pension, or recreation to alleviate pressures linked with being a full time carer,” Anna says.

Anna says recreational activities to enable herself as Esther’s main carer and the family to have a breather and a break from everyday routine is important because from a long-term perspective, the pressures of being a full-time carer with a family to support poses a threat to the carer’s mental and physical health, “which of course won’t help anybody”.

Anna, who is originally from Slovakia but has lived in Ireland for 15 years and raised her family here, points out that on a practical level, things are harder because neither her or her husband’s families live in Ireland.

“I want to be available for my family in good health,” the devoted mum says, adding: “I’m not blessed enough to have close or extended family around to help me even a little, which could provide a safety net.”

‘TREMENDOUS STRESS’

Anna points out that a diagnosis of Down’s syndrome, accompanied by Esther’s additional health conditions, requires frequent appointments, and she says more private therapies and costs associated with Esther’s health will rise.

“If you have more children, like us, this will reflect on additional child minding costs when you are away. Everything is so expensive these days and we don’t know how long we can go on like this. Our financial situation is causing tremendous stress for the family and pressure on our marriage.”

She says that the Government simply does not value the work of a carer for a child with special needs, and this is reflected in its policy.

“My work as a full-time carer to a person with special needs is not valued by the Irish Government. This is wrong. Caring for such a baby can be demanding on every level, and this increases when there are other factors to consider.  Physically, emotionally and financially, not to mention that there is little time to think about yourself.”

Anna and her husband, who came to Ireland together from Slovakia in December 2007, both worked since they moved here, and even relocated around the country for work in order to save money, seeing as Dublin was becoming unrealistically expensive and the couple would not be able to afford a home in the capital. They now live in Tuam, County Galway.

“Knowing that our family was growing, we haven’t been reckless with money, and saved as much as possible for the new house deposit, and changed work and school a few times. It took us nearly ten years to get there, yet houses were still too expensive for us. We could afford to buy in rural Ireland where we moved in 2017 and my husband had to commute to work daily.”

She adds:

“We worked hard to provide for our family all these years, never milking the system, and we are punished [for working hard] now.”

Anna and her family received Domiciliary Care, however she says that is helping to cover very few costs. A single visit to Crumlin Hospital necessitates 8 hours of babysitting four children, a cost of €160, plus diesel, tolls and parking in Dublin estimated at another €90 euros – €250 euro in total. The cost of daily life for the family can feel “staggering” she said.

“There is no food for the children or us included in that for the day,” Anna adds.

She says that her recent attendance at a webinar for parents of children with Down syndrome was tinged with sadness because the family are not in a financial position to put away money for Esther’s future.

“A few weeks ago I attended a webinar for parents with children with Down syndrome about the importance of starting financial trust funds as soon as possible. I left very sadly, knowing our situation.

“Healthy children are a little different,” she says, because “they could grow up with less and one day, please God, they will all be able to take care of themselves. Esther, however, will not be the same.

“Money is important in this case to pay for additional expenses linked to her condition. With more children in the family and ever-rising associated costs and one salary, very soon this will be impossible.”

‘I WANT TO GIVE HER ALL THE POSSIBLE OPPORTUNITIES IN THIS WORLD’

Anna, who appeared on Ireland AM with baby Esther back in March to talk about her push to get necessary supports, such as a speech therapy referral for her daughter, says she feels the situation is a symptom of society’s attitude towards babies with additional needs. She says that while there is a lot of talk about inclusion and equality in Ireland, she describes what she has experienced as “selective inclusion”.

Anna says:

“I feel I am being punished for accepting and loving my child, not perfect in the eyes of this world.

“I work 24/7 with love and care for my Esther. I want to give her all the possible opportunities in this world, but without money this is impossible. My husband pays over 3000 euro each month on taxes, yet, we are not able to get help when we need it, just because we are not abusing the system.”

Anna says families who bring special needs children into the world must not be punished. Rather, the value they and their children bring to the world must be recognised and the necessary financial help given.

“It has to be recognised that middle-class families who decide to bring special needs children into this world will not be punished for working hard over the years and not milking and abusing the system. They are the backbone of society, creating value for the future.”

Esther with her big sister and brothers at a recent family event

Anna says she hopes Irish politicians will recognise the plight of families like hers, and will start rewarding carers with the recognition they need and deserve in the form of better financial support.

“For me as a mum, this is truly heart-breaking. I hope that Irish politicians can see it and recognise this reality and the importance of my work as a full-time carer.”

Anna has set up an Instagram account to share Esther’s journey, spread positivity and help raise Down syndrome awareness. You can follow Esther and her family’s journey by following the account here.

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