In Ireland, if you have a severely disabled child, odds are you will end up on social welfare – especially if you are a lone parent. Unable to work, and with there being little or no government provided care facilities, in home nursing option, or a combination of both, you find yourself leaving your career to become a full time carer. You lose your income, your chance at a pension, your chance of retirement, your chance of regular holidays, and your chance at being financially secure. You also lose that sense of self which comes with daily professional, adult interaction with your peers and work colleagues. You lose that mental stimulation which brings intellectual growth, positive mental health and a contentment with your well-rounded life. You become trapped in your home, often for days on end, caring for a child with profound needs, and no one can hear your cry for help. (If you are not a carer, and especially if you are in the government, I ask that you please read that paragraph once more, just to let it really soak in.)

What if…

What if Ireland adopted a program similar to one the state of Colorado in the US has for families with a disabled child? Let me explain their unique, but very progressive, program: If your disabled child is in receipt of medicaid (basically a medical card here in Ireland), you can choose to become that child’s paid carer by becoming a Certified Nursing Assistant (CNA). You will go through the CNA training course, which is the first part of a nursing degree, and must pass the state administered skills test to gain certification. Then you become an employee of one of the home health care agencies in your area. You will do everything that all the other CNA employees of the company do who are caring for non-related clients – you follow a daily care plan for the child, fill out timesheets, must attend annual CNA recertification courses, and so forth. It is an actual profession. You receive the going fair market rate of pay. You also do not get taxed on your income because your pay is from government funding as part of your child’s entitled care needs that are set out under medicaid. You do, however, get to pay into social security (ie: retirement pension funding). Your child’s SSI payment (Ireland’s DCA equivalent) does not count toward the medicaid financial means test, nor does your CNA income, so your child is not at risk of losing either medicaid or SSI.

What if Ireland adopted a similar program? Carers would be able to financially contribute more to the economy. Carers would be able to continue building their CV by being actual employees of a health care provider with an actual profession. Carers would be able to have financial security, and the all important security of a growing retirement pension fund. As such, carers would be a more active contributor to the economy, rather than “mere social welfare recipients”, and would also be less dependent upon the government when it comes time to retire because our pensions would be building via our employment contributions. Also, from a governmental perspective, this program saves the state of Colorado millions of dollars annually because rather than them paying full nursing wages for the care of the disabled child, they pay CNA wages, which are about half that of a nurse’s wage. This is only one idea, one suggestion. There are many to be considered.

There is another aspect of this entire scenario, and that is respite. Carers MUST also receive respite on a regular, appropriate and individualised basis that suits their particular situation. Currently, that simply is NOT happening in Ireland.

Carers, such as myself, are drowning in a forgotten (or is it ignored?) mire of struggle. 

I recently wrote a piece about caring, and how Carer’s Allowance and DCA equates to receiving €1.64 per hour considering we carers work 24/7, 7 days a week. This is no exaggeration, let that be heard loud and clear. I wonder who in their right mind would accept a position working those hours, especially at that rate of pay and with zero security for the future? Frankly, I cannot think of anyone who would. We carers do it because 1. We must, and 2. We love our children. THIS is what the government is counting on. They know we are backed into a corner.

I ask this question: What if we carers went on strike, such as the nurses, bus drivers, luas drivers, Tesco workers, etc? What if we…the thousands of us across this great island of Ireland…one selected day all took our precious disabled children into our local A&E departments and said “Here, you handle it. I’m on strike.”

No, of course we would never do that, and again, the government knows that we won’t. 

So, we carers sit huddled in our backed into corner; we drown in the mire; all while caring for the most fragile of citizens in Ireland. But, and this is a very important point, we are becoming very united in our voice calling for reforms, fairness, equality and help from our government. I have never met a more passionate, strong-willed group of people than special needs parents. We are like the sleeping momma bear that wakes in anger when she realises her cubs are being attacked.

I would like the powers at be to actively engage with us – the carers of this country – about the much needed reforms in this area, and then actually take action on those fair reforms.