On begging for services

This is part four of a planned series of posts about our experience of the transition from special school to adult disability services for my middle daughter who finishes school this year. You can read Part 1 here, Part 2 here and Part 3 here.


Is this what I will have to do next?

Two months have passed and very little has happened. Still no premises, still no place for Smiley once school ends in June.

I am networking with other parents in a similar situation and we are sharing information and issuing stories through social media. One of the national papers is interested in writing a feature on the situation facing young school leavers, but no parent seems interested in being interviewed. That includes me. But maybe I need to consider it.





The idea of begging is just awful. I've always been independent, hated my short stint on means tested benefits, hate the idea of asking for help. But this is my daughter. She has no voice. She cannot lobby. She cannot protest. She is TOTALLY dependent on others to fight her corner. And mostly she's dependent on me. And I know that some of you are sick of hearing this: but I CANNOT provide everything that she needs to live a full life. She needs some kind of a service, as a change from being with me all the time.  But do I really have to beg for this? In one of the richest countries in the world?

It looks that way.

Worse, begging reinforces the idea that my daughter is a burden on society, with her needs to be paid for by "hard-working" families, but only after "essential" services are funded, obviously. I can't even go to court, because adults with disabilities and special needs have no legal right to services.

What can I say? It's unbelievable. It's a desperate decision. I know that I put our lives on here, but appearing in the national press feels different, especially as they'll probably wants names and photos.

Now that I'm considering it, I can totally understand why other families would be reluctant.

And how do I protect my other children? How I ensure that details of their lives - and my son's autism - do not become public too? Let alone the details of my marriage breakdown.

It's one thing to post on here where I have some control, and quite another to give my story to a journalist without knowing what angle they will use. I have been both a PR and a journalist and I know the value of a good story.

I once burned my typing fingers on an Irish Parenting site called Magic Mum when I was campaigning for child benefit, and got reactions like this.


I haven't the emotional strength to deal with feedback like that anymore.

It will be a balancing act. Getting a story in the national papers does not guarantee services for my daughter, but it does mean that our story is out there with names and details for ever more, and I'm not sure that I am willing to pay that price.

And what does it say about our society when people feel that laying out their lives for public scrutiny and begging for help, is the only way of securing it?


14 comments:

  1. Oh goodness. We are so much further behind you on this journey but I think I have some understanding of the dilemma you face. I totally understand the fear of backlash and your need to protect all of your children. It's so rotten that things have got to this point. You are not begging. You are asserting her rights and doing what any responsible parent would. Might the threat of going to the newspapers be enough to get some traction? I'm sure you've thought of that. Can we do anything to help?

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    1. Sadly the threat of going to the media won't help because adults with special needs have no rights in law. As a result their needs seem to be bottom of the list when it comes to funding priorities. And thanks so much for your offer of help when I know that you have so much going on too xx

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  2. I wish that I had words for you...sage advice...all I have to give is my support-you have that in abundance...(((())))

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    1. Your support is gratefully received, thank you so much xx

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  3. I am not sure what the 'right' thing for you and your family is, but I think as time goes on you will know. I will help in any way I can to spread the word if you ever wish me to. I often think of you and smiley, of the never ending mothering you have ahead of you, and her lovely smiley face and how she must fill your heart, which makes the lack of help for her even more sickening.
    I hope you do get looked after and you never have to make the decision to go public or not.

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    1. I am doing as you suggest and not rushing into any decision about going public. And guess what? She's dancing and smiling with me as I type this :)

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  4. I hear your dilemma I really do. And it's not right, in fact it's very, very wrong, that you (and your whole family) should be put in this situation. I wonder if there's anyway you could control what would get printed? The rest of your private information and you son's details is really irrelevant. I know it makes a 'better' story and possibly a better 'case' too. But it shouldn't be like that at all. An adult with disabilities deserves services and their carer support irrespective of other members of the family. But I know that's not probably how it works....... ((xx))

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    1. Sadly it isn't, and there's the temptation to fill out the story in order to get "sympathy" and I'm cringing as I type that :) xx

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  5. I read this two days ago but didn't know what to write to you. Just that I am here reading and getting frustrated for you and Smiley. The system sucks. xxxxx

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  6. Ohh gosh C, what a shitty situation. It is so bad but I dont have any words. I had no idea that adults with disabilities or special needs have no right to legal help, how can that be right??? Sending you a massive hug. Mich x

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    1. It's not right, I don't know what the situation is in the UK, it might be different x

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  7. Wow, I don't really know what to say, the system is really bad... Could you not tell your story anonymously or approve of the article before it gets published? I've never been in that situation so it's easy to say but maybe not to do,... Anyway, I really hope things will get better for Smiley and for you :-)

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    1. I just feel so uncomfortable about putting myself out there, especially when there is another brother and sister involved too!

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