LAST month, the JEP launched its #TimetoCare campaign, highlighting growing calls to improve support for unpaid carers with a focus on removing “discriminatory” legislation affecting the benefits available to them.
At the centre of the campaign has been Islander Mark Jones, who lost his wife to cancer 13 years ago and is a full-time carer for his son Ryan, who has Down’s syndrome, and his daughter Megan, who has severe autism.
Because he claims home carer’s allowance for his role looking after Megan, whose needs are greater, the 69-year-old is unable to receive his old-age pension.
This is due to the Social Security (Overlapping of Benefits) (Jersey) Order 1975, which prevents HCA from being issued alongside other benefits.
Mr Jones has called for the “unjust” rule to be scrapped, arguing that it “punishes” carers and needs to be changed immediately.
Support network Carers Jersey has also branded the policy “discriminatory” and said it is placing some Islanders in “an impossible, untenable situation”.
Shortly after the campaign was launched, Social Security Minister Lyndsay Feltham announced that she had “directed officers to undertake an urgent review of the range of support available”, explaining that this work would include “looking at increased support and, if required, legislative change”.
And in an update last week, the minister said this work was under way and being prioritised.
As part of the campaign, the JEP has asked Mr Jones to outline what a normal day of care involves.
He said: “To fully understand Meg, you have to realise that for most of her life and due to her level of autism, she has had a violent and aggressive nature, and prior to my wife passing when Meg was 14, Heather use to be ‘attacked’ several times a day.”
Mr Jones continued: “Following Heather’s passing, for a number of years Meg attacked me. However, after taking advice on medication, her growing up and me understanding her moods better, her behaviour has improved massively and for example she hasn’t hit me for two months.
“However, because of previous experiences, I am always wary and walk on egg shells to hopefully prevent ‘her kicking off’.
“I should point out the hurt you feel when your daughter feels the need to hit and scream at you and at over ten stone, the physical pain as bad as much as it is, it’s nothing to compare to the emotional pain.”
Describing a normal day, Mr Jones added: “Megan would normally stay in bed till 11.30am at least and this is something I’ve always allowed as to try and get her up earlier could result in her being in a bad mood.
“She would get herself showered and dressed and I would make her breakfast (Meg has never cooked).
“She will then relax by watching children’s TV or playing on her iPad.
“Although Meg cannot engage in ‘normal’ conversation, she would talk incessantly about the programmes she watches and obviously I have to respond as if I don’t she can get annoyed.
“Later in the day we will go for a drive with Ryan who will have his headphones on so Meg can also listen and they have fantastic interaction which is lovely to see.
“I take Meg driving for about 90 minutes every day and normally combine it with shopping to break it up.
“After dinner, Meg will normally do the same, watching TV and playing with her iPad until bedtime at 11.30pm.”
Certain factors to bear in mind with “Meg’s World” and her behaviour:
- Whenever we leave the house, I always hold Meg’s hand as she doesn’t have a good understanding of traffic etc.
- Meg is petrified of flies, bees and birds to the extent that I’m never allowed to open windows at home, even if we are in a heatwave.
- Certain things can trigger Meg’s aggressive behaviour, like things breaking down or not working and unfortunately she expects me to fix it, which I sometimes can’t.
- Certain words like “fix”, “try” or “again” can trigger aggressive behaviour and no matter how much you try to avoid them, you can’t all the time.
- Meg has a tendency to rip clothes and bedding which is done as a “safety blanket” and because of that it’s difficult to stop her and also it could result in aggression.
- I have and never will leave Meg in the house without me.
“I fully appreciate the above sounds somewhat daunting but I must emphasise she is a wonderful young lady, very humorous and happy in her own world and brings so much joy into our lives.
“I’ll never regret the decision I made when Heather died, that Ryan and Meg will live with me all the time as long as I am in reasonably health, which I currently am, but it does get harder the older you get.”
