Mum may die without respite for profoundly disabled son

What do you have to do to get respite for a severely intellectually disabled young adult? One Mum believes that the Irish Health Service (HSE) would let her die before they help her family. She lives in Kerry and worked in the transport sector until she was floored by serious illness. She and her husband also care for their 19 year old son who has a profound intellectual disability, yet now when they need respite after she almost died in hospital, none is available.

This is her story**:

"My son Ben is a lovely, happy, friendly young man. But there is a lot of work involved in caring for him. And we used to have help. We got weekly respite for our son from age of 5 to 18 and spent 2 years having case conferences with the service providers and the health service to plan his future. We wanted a smooth transition to adult services for him. But when he turned 18 in March of 2015 he was just chucked out of his service. We have no idea why our son wasn't kept on. He never caused them any trouble. And neither did we. We had a very good working relationship."

Since then they been trying to cope with their son's difficulties without any outside help.

"Ben has very little language and is completely incontinent. He is also tall and strong.  He does a lot of high pitched screaming and flapping, but we are lucky in that he doesn't get violent (the odd outburst with his little brother so they can't be left unsupervised). He also likes to break things and throw things. Its not malicious, its just a fascination he has. At least one morning a week we will wake up to him, his bedroom and anywhere he has sat, covered in excrement. I find that very hard."

Their lives got a lot harder when Nicola ended up in hospital with a serious illness at the end of February.

"I spent 2 1/2 weeks on life support. My family were told to make funeral arrangements. I am 39! When I woke I was told I would spend 2 months in hospital recuperating, but I had to leave after nine days, because nobody would provide help with our son. We made an emergency case to the HSE and it took them two months to arrange a meeting."

But there was bad news at the meeting.

"Our emergency respite application was rejected due to lack of funding. It also became clear that the majority of emergency cases stay on the emergency list for a minimum of 6 months. Meantime my life is in danger. If I don't take care of myself, with proper rest and recuperation, we don't know what will happen. I will never have full lung capacity again. Also I have problems with memory, coordination, balance and my hair is falling out. My husband asked today what constitutes a genuine emergency and we were told that we would be getting respite if I died. So I just need to die for my son's respite services to be reinstated......it's just unimaginable."

Can you imagine being told you have to die to get help? But not getting help may cause you to die? The HSE and the new Government needs to act now to end scandals like this, and stop ruining people's lives.  And don't use the lack of funding excuse, the money is there, it's just being spent on the wrong things.



** Based on Facebook posts and printed here with her permission to try and help raise publicity for her situation.


23 comments:

  1. That is shocking! It is so wrong that no help is there! x

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    1. I know, I couldn't stand by and not try to help x

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  2. Sometimes this country sickens me.

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    1. I don't think it's much better elsewhere either.

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  3. There are no words for this no excuses wrong on so many levels. The HSE are effectively handing this poor woman a death sentence.

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  4. Appalling story.This family needs help now and HSE managers heads should roll for letting the situation get this dire.

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  5. This is just too awful for words. I feel so sad for the family and really hope that a solution is possible.

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  6. This is insane. I'm horrified.

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  7. It's not fair to the family especially to their son. The hse should help families with children with disabilities regardless of the situation and more so in cases like this one. I feel so sad everytime I hear news like this. This is so heartbreaking...

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  8. This is one of the reasons why I am moving abroad and I am lucky enough to have this opportunity. There's no help here even at a child's young age so I don't expect help to be there for my child when I die so I had to make a big decision for my child's sake.

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    1. I really hope that your move gives your child a brighter future x

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  9. They have done theyre part as parents theyre son is now 19 and an adult and should be fully provided for by the state shame on our country

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    1. I'm starting to understand this view too, now that my daughter is 19 and I'm having to fight for her all over again.

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  10. That is just insane and morally so wrong!

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    1. I know and thanks so much for reading and commenting Yaz x

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  11. Can we get this onto main evening news? And get minister for health to comment?

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    1. That would be great wouldn't it? A number of people have been trying and will keep trying too.

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  12. Could she take her son to the authorities and sit him there are walk away so they have no choice?

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