Today, as the weather continues its plunge into winter, Tracy McGinnis has no heating in the home in Kildare she shares with her two sons, one of whom is severely disabled and may not have much longer to live.
She keeps the fire going downstairs and has an electric fire going in the boys’ room which she switches to her own room for a few minutes before she goes to bed.
She describes her unfinished, uninsulated house as “dangerous” and that would be one thing if 13-year-old Brendan were in the whole of his health.
Sadly that is very far from the case. Because of the devastating impact of the Cytomegalo virus, which Tracy contracted in the first trimester of the pregnancy, Brendan was born with multiple disabilities, including severe cerebral palsy, uncontrolled epilepsy and scoliosis which is beginning to crush his internal organs. He can’t speak or walk and has to be peg-fed.
To navigate her difficult life with reasonable comfort, Tracy needs to be in a suitable house, with no step to struggle over at the front and a wet room rather than a little bath which Brendan has to be hoisted over.
Tracy’s housing crisis is a nightmare but she’d like to be able to solve it on her own terms. She wants a mortgage but she isn’t eligible for the a low cost mortgage from her local county council because she’s — ahem — “not working”.
She’s “not working” because she’s caring for Brendan 24/7 and her Carer’s Allowance and other State entitlements are her only income.
She has been told repeatedly that State entitlements are not “income” and don’t qualify her for an assisted loan. She argues back that, in fact, they’re more secure than the income from most jobs that can be gone overnight.
It is true, of course, that her Carer’s Allowance could also go overnight — if her son Brendan died of one of his many health challenges. In fact, he’s doing well to have got to the age he is and Tracy knows the time is coming when, as she writes in her blog, Transitioning Angels:
“He will no longer be an angel on this earth but one who looks down on me and his little brother from a place far more beautiful than I can imagine.”
In this “beautiful place” which Tracy imagines there are, I feel sure, no hoists or ramps, no tubes or medications and the heating is on full blast.
When Brendan is there, however, he will no longer be with his loving mother and brother which will bring them unimaginable pain.
That’s why Tracy says it “took her breath away” when a local authority employee dealing with her mortgage claim asked:
“What will you do when you’re no longer a carer?”
She managed to right herself in time to reply, as calmly as possible, that she would go out and look for another job.
It’s more than likely that her pay would be higher than her Carer’s Allowance. She has a Master’s Degree in counselling and a BA in cross cultural counselling.
Tracy McGinnis is caring full-time because she is a single parent of a chronically disabled child and she has no choice.
What she doesn’t say is that quite apart from the advanced nursing skills she has developed on the job, the concern she has for Brendan beams out of her like a life force.
As I watched Tracy from a front seat at the Spark conference on lone parenting and mental health in Liberty Hall at the weekend, powerful waves of love poured towards the stretcher-type wheelchair where Brendan sat. Powerful waves of love poured back.
No-one else could possibly care for Brendan like Tracy, though clearly she could do with a roster of back-up staff and will need more as his health deteriorates.
Yet all we give her is a charity hand-out which does not recognise the value of her work and accords her no worker’s rights.
The gift of love and care which she gives to Brendan mean she gets to live in an unheated hovel, has no holidays, has no pension and will be impoverished in later life.
She wants a job. The job she is doing.
Tracy McGinnis has imported from the US state of Colorado the brilliant concept, now in operation in that state, that home carers can be trained as nursing assistants and be employed by the State through an agency to care for their own loved ones if they are in receipt of Medicaid.
The training is rigorous, involving 70 hours of classroom instruction and 20 hours of clinical training in a nursing home. You have to do biannual refresher courses in CPR and First Aid.
You’re supervised by a nursing supervisor who makes an assessment of the care needs of the patient and helps devise a daily care schedule.
In return for this regulation, you get paid a wage. You get paid overtime for weekends and nights if that’s required, which means there is an earnings gap between someone like Tracy and someone who pops in on an elderly relative a few times a day.
You get paid holidays. You get health care. In the case of one agency at least, there is the option of profit sharing.
You get the respect due to a waged earner if you’re doing your job properly. And it’s not possible that all carers are doing their jobs properly, anywhere.
You also acquire a marketable skill which you can resell whenever, as the council employee said to Tracy: “You’re not a carer anymore.”
This is the policy agenda which this country’s army of 200,000 carers should adopt. Not just a few extra quid in the Carer’s Allowance or Respite Care Grant but genuine workers’ rights.
This is the direction the feminist movement should go too. We’ve had enough about the “gender stereotyping” of caring roles.
Sometimes loving someone so much you don’t want to leave their care to someone else is not weakness, but strength.
Rosemary Crosse and Michelle Millar, who researched the impact of the 2012 “labour activation” measures on lone parents for the Department of Social Protection, reminded the conference that 52% of lone parents are financially worse off following the cuts and 63% who are now in full-time employment are still officially living in “deprivation”.
They also said the effect on children of the labour activation of their mothers was among the impacts which had not been measured.
As we spend an extra €19m on introducing the new subsidies for creche care, isn’t it time to lobby for parents in receipt of benefits to have the option of training and getting paid to care for their own children?