MY SISTER DIED very suddenly in September and I had to travel home to Australia to attend her funeral. When I got back, I decided to take a break from work and focus on my children for a while. I can do that you see, because I am what is described in modern Ireland as an entrepreneur, or in my case a “snumpreneur” (special needs mum entrepreneur) and I work for myself.
I came up with the the Grace App, which allows people with autism and speech delay to communicate with pictures on iPhones, iPads and such. I named it after my daughter Grace who has autism, and worked in collaboration with games developer Steve Troughton-Smith, who does all the coding.
Entrepreneurs are celebrated in Ireland. I’ve won a number of awards, I get in the papers and my local TDs send letters of congratulations. I even got my photo taken with An Taoiseach when I made the final of Social Entrepreneurs Ireland.
Entrepreneurs, and especially tech start-ups, can apply for dozens of grants and micro funds. There’s even a special category of visa just to attract overseas entrepreneurs to come here and start something. They make great press releases and photo opportunities for our leaders and senior bureaucrats. Only yesterday I read about an e-reading company supported by Nova UCD and there’s Minister Bruton congratulating them on creating a number of jobs. Yay for start-ups!
But on the same page as that story was one about carers protesting outside Leinster House. You see, I’m also considered a “carer” for my daughter Grace (13) and son Liam (15), who are both very autistic.
Under the social welfare rules for carer’s allowance I am allowed to work from home for about 20 hours a week. And with two teenaged autistic kids, being a ‘snumpreneur’ is about the only job possible as I can work it around school times and do a bit here and there. It is also the only hope I have of being able to get out of the social welfare loop and securing my children’s future.
I’ve found having the choice to juggle makes each role more rewarding. Next week I might be giving a keynote to 100 people in Valencia, getting lovely feedback and feeling like I’m making a difference to the world. When I get home I get just as much satisfaction from making sure my two kids are well-nourished, they have had a bit of fresh air and exercise and I have put them to bed with clean teeth.
However, thanks to some recent behavioural issues with my son, which you can read about here in my personal blog, I’ve had to focus on my role as carer. and I’m realising that we are not celebrated.
In fact, in the latest Budget a cut of €325 to the Annual Carer’s Respite Grant was announced, and passed the Dáil yesterday.
To be clear, this grant is rarely used for a big holiday. The majority of carers save it to use all year for short spells of respite. I put mine in the Credit Union and use it to pay a helper so I can take my son out in the school holidays. Sadly there are too many using it just to keep their home warm and the person they care for comfortable. It is not a ‘bonus’, but an essential band-aid over a very flawed disability service which the government seems unable and unwilling to measure or regulate.
A 20 per cent cut is terrible, but what is worse is the rhetoric that has accompanied the debate.
This is having a huge personal and psychological effect on carers but if a recent poll on this site is to be relied upon, 49 per cent of modern Ireland is happy to let this pass. They, like our current coalition government see carers as a cost burden which must be curtailed.
I’ve demonstrated, I contacted all my TDs in solidarity with my fellow carers, but every time I told my story I felt my self esteem and pride in doing what I do, ebb away. The TDs I speak to make me feel like I made a choice to be a ‘scrounger’. The Minister for Social Protection is trying to save €645 million and we won’t give up our €325? Boooo!
I’m still trying to be a snumpreneur. Yesterday was a good day and I’m feeling positive about my son’s behaviour and I might get a bit of work done today. However, most carers don’t get that choice.
The opposite of caring is neglect. I’m lucky to be able to take time off from my app business knowing it will still be there when I’ve got the energy to focus on it. If I quit trying to manage my son, then he goes into residential care which could cost the state €300,000 per year. And break my heart.
So I say to our current government: It is not okay to sell out your principles and hit Ireland’s most vulnerable hardest just to stay in power and this will be a deal breaker when it comes to the next election. Beware the Ghost of Coalitions Past.
Lisa Domican is a Wicklow based mother of two autistic children. She developed a simple picture communication app in collaboration with a successful games developer that allows non verbal people with autism and other disabilities to communicate effectively. Learn more about the app here.
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