'Childcare scheme leaves out working families whose children have special needs'

Nason and Linda Neill with their children Nason, 3, and, right, 20-month-old Arlo — who has intestinal failure and total gut dysmotility.  Pictures: Moya Nolan

Loving and caring for a child with a disability can be both a privilege and extremely demanding.

That is why provisions are made in legislation for children who cannot avail of the kind of education and supports that would otherwise be the case. There is acceptance that extra supports are required, and in a republic, should be accommodated by the state.

In the case of Arlo Neill, a question arises as to whether the State is actually making life more punitive for him and his family though a policy that doesn’t seem to make any sense.

Arlo, who lives with his family in Booterstown, Co Dublin, is 20 months old. He has intestinal failure and a condition known as total gut dysmotility. He has to be fed intravenously and he takes a range of medicines daily for his condition.

Apart from the serious physical disability, he is described as a “happy and sociable child”.

Following his birth, he spent an extended period in CHI at Crumlin, but is now at home.

His mother Linda is attempting to return to her work as an accountant, but this is where the issue arises.

Arlo Neill in the hall with his parents Nason and Linda and brother Nason, 3, left. Linda is carrying the backpack containing Arlo's total parental (IV) nutrition which will be administered over 16 hours.  Picture: Moya Nolan

The National Childcare Scheme (NCS) provides a universal benefit for anybody requiring childcare. The scheme was introduced in 2019 to replace a variety of subsidies that existed previously.

The non-means-tested subsidy amounts to €2.14 per hour for up to 45 hours a week. This works out at just over €5,000 per annum if fully availed of.

The only qualifying criterion is that the child’s parents are in employment and therefore require childcare.

A place in a creche was secured for Arlo before his condition became known to his family and medical team. And then, when he was released from hospital, the creche owners were consulted and confirmed that they did not have the facility to accommodate Arlo’s needs.

Arlo’s medical team in Crumlin agreed that he would be totally unsuited to a group setting such as a creche.

Within the parameters of the childcare provision, the only alternative was to attend a childminder. Again, this was unsuitable as it would be in a group setting outside Arlo’s home. So his parents opted for the only alternative — they employed a nanny with a healthcare background for Arlo. This person comes into the Neill home.

Arlo has to be fed intravenously and takes a range of medicines daily. The family employs a nanny with a healthcare background, but the National Childcare Scheme does not cover this. Picture: Moya Nolan

However, the NCS does not cover the provision of a nanny.

On one level, this makes sense. To the greatest extent, employment of a nanny is a privilege. Generally, this form of childcare is availed of by those at the upper reaches of the socio-economic spectrum.

The problem arises when a nanny is employed not through choice but necessity, and not as a luxury but because the child concerned is unable to attend a group setting. Linda Neill says: 

The way it is designed, it looks like they simply forgot about parents who go back to work. 

“I understand why they don’t want to supplement the employment of nannies as it is something of a privilege to have somebody in your house looking after your children. But what they have done through omission is left out the children with special needs who cannot go into a group setting.”

Linda has been “banging my head off walls” trying to find a resolution. She has engaged with her local authority, the Pobal agency which administers the scheme, and with government departments, all to no avail.

In the end she felt she had no choice but to take a case for discrimination.

Arlo Neill, 20 months, who suffers from Intestinal Failure with his father Nason and mother Linda who is carrying the backpack containing Arlo's Total Parental Nutrition (IV nutrition). Picture: Moya Nolan

“There are a lot of parents of children with additional needs who are out of work but might want or need to return,” she says. “But this kind of thing makes it difficult.

“Apart from the impact it directly has on families, look at it purely from a financial angle for the Government.

“They are effectively saying they don’t need the tax that I would pay if I went back to work. Helping me out with the cost of a nanny means that I can be in meaningful employment. I would be staying out of government schemes because I was working, and employing somebody else as well.

“So apart from discriminating because of a child’s disability, it makes no sense financially.”

The situation they find themselves in has been raised in the Dáil and they lodged the complaint for discrimination at the Workplace Relations Commission earlier this month.

The process will play out and arrive at a result. In a state functioning properly, there would be no requirement to wait for that result as action would quickly be taken to amend what is quite obviously a flaw in the law.