Lack of support keeps carers in ‘crisis mode’

A SOUTH Galway mother is calling on the Government to provide more support for parents of children with special needs, who she says are at breaking point.
Sonja Luan Devine’s son, Ché O’Grady, is 11-years-old and suffers from cerebral palsy. Since he was born, as well as being his mother she is also his carer but because Ché’s needs are so great, Sonja is unable to work and finds it difficult to make ends meet.
“People have no clue how tightly families with children with special needs are squeezed.
Even the fact the dole is the same as carer’s allowance is, quite frankly, insulting on a very deep level. Because I have a partner, I get half the carer’s allowance so I get €100 per week. A trip to the hospital in Dublin could cost
€150,” she says.
Even if she had the time to work, Sonja doesn’t believe anyone would hire her.
“I don’t think I’m employable at the moment because I can’t be relied on. I could get a call at any time for an emergency. I don’t foresee a time when this is going to change. I can’t go out and earn money and buy what my son needs, which I would be capable of, so where is it heading?” she wonders.
Beyond that her health, and she believes the health of other carers, is badly affected by a
lack of supports.
“I am exhausted. My own health is suffering. It is getting harder and harder and it is only a matter of time before families won’t be able to care for their children. What will happen then? Parents need respite. They desperately
need it,” she says.
“I can’t be the only person who feels like they are free-falling. If carers were healthier, it would be more benefi cial for them, the person they are caring for and also the taxpayer.
“This time last year I was so extremely overwhelmed I was wondering could I continue caring for Ché but I was told if I can’t, there is nowhere else from my child. With a small amount of money and help it could be doable, rather than quite a lot of the time being in crisis mode,” she adds.
The Brothers of Charity now provide respite care to Sonja and her family.
“It is incredible. I can’t put into words what it is like to have met such a wonderful family and Ché is so happy with that service,” she says.
Sonja gets regular respite, one overnight a week and one weekend a month.
“It sounds a lot but that is after 10 years. Ché needs 24/7 care. He needs something done for him every hour or even every half hour. On top of that, there are possible trips to A&E for choking or because he has an undiagnosed allergy. He also needs to be watched all the time, like around the oven or if the door was open he might run out. He can have quite
challenging behaviour. He is restless. Don’t get me wrong, he has very sweet behaviour too and really he is very good considering the level of frustration he experiences. I can see him trying to cope with things but the fact is
it is not possible for one person to look after Ché,” she believes.
Sonja welcomes the end of “outdated institutions” but feels “nothing has been put in place as an alternative”.
“I really want to be able to continue to raise my child in his community and in his home but it gets more diffi cult every year. It is more challenging for me personally. The financial side of things is extremely restrictive and you
can survive paying bills and buying food. We are surviving but it is not living and it doesn’t leave much wiggle room if things get worse. When I was young, I didn’t think about the future. I thought I would raise and love Ché
but love isn’t enough. Surviving is ok but it is not a way to live,” she says.
“All my energy is going into providing for his basic care needs. The services have never improved, not even in the Celtic Tiger. It doesn’t make fi nancial sense for the Government that they are making it so diffi cult for carers to take care of their children,” she adds.
Sonja describes herself as generally a happy person but says years of looking for solutions and not finding them has left her jaded.
“Everything has been a fi ght. I am very outspoken and I try to be a proactive advocate and fought for Ché over the years because my vision for what I wanted his life to be, I put a lot of energy into that and now I feel absolutely burnt out. I have an 11-year-old little boy who I have to raise to be an adult and I’m not sure how to do that.
“It is getting to me and I’m not sure how long I can do this,” she reveals. “I need more help. I need money to pay for that and I can’t go and earn it.”
Sonja believes the Government should provide respite for carers and says having an alternative carer in two afternoons a week would make a big difference to her quality of life and that of her son.
“If you are caring for a child 24/7, them going to school isn’t enough. No 11-year-old
wants to be with their mom all the time. He is interested in the world and wants to go and see it but unfortunately I am too tired or can’t physically get him into the car to show it to him,” she says.
“If this was a job, if I was employed as a carer to do what we do, there would be rules about the numbers of hours you could work, about minimum wage, about holidays and health and safety. Residential care is much more expensive than having a carer, so why are carers not given more support? People ask why carers aren’t out marching or protesting about this but how can we?” she asks.
Sonja believes there should be more opportunities for people with disabilities.
“Ché will never be able for independent living so that is not an option for him. I would love to see Ché in a Camp Hill type environment, so in a small self-sustaining community of people with special needs based on the Steiner education system. They have a farm, there is a lot of emphasis on growing things and woodwork but the adults live in homes and have a volunteer system and it is sociable. Ché loves being with his peer group. How incredible would it be for Ché to be somewhere happy and stimulating and for me to have enough time to be able to come back rested?” she says.
“There are so many pleasures in my life with Ché but I can’t enjoy them because we are squeezed so tight. It would be easier if there was slightly more breathing space. It would be less overwhelming,” Sonja concludes.