I haven't really blogged my experiences with social services.
How do you write about three years, 13 assessments (OT, Adult services, child services and repeat on a loop) and all the pain and shame of admitting your life is not - and will never again be - what you need it to be?
Cutting a long and miserable story short, I'm a disabled parent of two young kids (cue looks of confusion and "we don't have a box for that") with a fluctuating condition (cue looks of confusion and "we don't have a box for that) who stubbornly insists on being enabled not disabled. (Cue looks of.....you get the idea)
But today, I just have to convey the utter ridiculousness of at least one aspect.
I can't pick the kids up from school. I'm totally housebound when Dave's at work. I can't walk far at all, but I can usually manage the steps in or out of my property on a good day. On a bad day I can't get out of bed at all - as you, dear readers, know very well. I can't drive as DVLA are "reconsidering" my right to a driving licence and I can't possibly get on a bus or the problem wouldn't exist, would it?
For 2 YEARS various friends have stepped up, either looking after my kids after school until Dave finishes work and goes to collect them or bringing them home if I'm up to looking after them til Dave gets here.
But that can't go on forever. Things go wrong, friends have their own lives. Invariably, Dave has to leave work all too often and get them. This is putting his job at risk and though his employers have been amazingly wonderful, he's on a very sticky wicket by now.
Child services won't help because the kids aren't the ones with disabilities. Adult services won't help because - yep you guessed it, they're not the ones with disabilities. Education won't help because I live within 2 miles of the catchment area - though of course you and I know that 2 miles might as well be 200 if you can't walk to the end of the drive. OT can't help with ramps to get an aid in and out because I couldn't self-propel my wheelchair far enough to be of any use on my own anyway and "they don't provide access for scooters". And DVLA can't help because, quite rightly, they don't care about any of that, simply whether or not I'm safe to drive.
Nonetheless, there is a legal requirement for my children to attend school! When I asked what would happen if we simply couldn't get them to and from school, education said then we'd be a family in crisis and they would have to step in. But we're "good" parents, "responsible" parents who "try to do the right thing" in politico speak. Nothing would allow us to see the children suffer.
So we're trapped. I'm not "disabled enough" to tick any of their boxes (except of course when I am, but we're back to the looks of confusion...) but "too disabled" to actually manage to pick the kids up.
And the moral of the tale is that endless cuts and sanctions and remote, academic theories see thousands like me fall through the cracks. The tighter the system gets, the more real lives stop functioning. I've lost count of how many people have peered patronisingly over their glasses at me and asked "Do you feel you can parent your children effectively?" And I've lost count of how many times I've cried tears of shame once they leave, realising that no, I can't. Not on my own. Not in any of the nice convenient tick-boxy kinds of ways they mean.
Demeaning and disabling, we muddle along in the same chaos we've juggled for three years now and every time, I have to pick myself up, dust myself down, maybe give myself a little slap and remind myself that life isn't lived by tick boxes. The love of your children isn't dependent on how far you can walk, how many trees you can climb or swings you can push. Their brave little faces know all to well what Mummy can and can't do. They celebrate the cans and brush away the can'ts. But every time hurts.
Even Nastier Post-Script.....
Feeling as though I may tip into desolate if I stayed home, I texted a friend and pretty much begged her to take me for cake. She duly screeched up outside my door, Flintstone style, just moments later and we munched our way through butter, sugar and icing salvation.
But I had to be back, because child services were also booked to come and see me today at 4.00pm Restored and just about able to face another onslaught, I went once again unto the breach. I asked rescue-friend to stay for moral support
Remember, Adults services had contacted them, simply to see if they will fund the "collecting kids from school" half an hour every day that means I could pay someone to bring the kids home. It would cost them £18 a week.
She arrived, hadn't confirmed any of the things she'd gone away to confirm three weeks ago and insisted on speaking to each of my children, one to one away from me, in their bedroom!! My youngest is 5!!!
Th 5 year old was too frightened to go, so she agreed he could sit with me!!! She asked what he worried about? Did he like school? Did he have lots of friends or just one or two?
He was upset. He would only whisper the answers to me.
After she'd gone, he cried twice over silly nothing-things. My friend cried too and said she was horrified. The social worker said it was just procedure, they did it with all referrals.
Me? Oh another little piece of me curled up and died.
Is there seriously a human being in the country, that believes anyone would subject themselves to this humiliation, this scrutiny if they didn't absolutely have no other choice?
And despite it all, you are able to stand up at the Labour Conference, looking cool and elegant and together, and deliver a tightly-constructed speech in which every word counts - I take off my hat to you, (to use an old-fashioned expression). We know, because we read your blog, how much that must have cost you, how much backup you must have had to get there. But it didn't show.
ReplyDeleteThanks Judith. As I left home that morning, my neighbour, a young guy from upstairs passed me in the lobby. He did a double take and said "Oh my God, you look lovely!" And gave me the biggest hug. He and his friends are the sweetest lads and they've only ever seen me looking peaky in a wheelchair or hobbling about with my stick (Or once, practically passed out in the doorway, lol, he got my hubby on his skateboard)
DeleteI only look like that for things like conference and it takes a great degree of expensive gifted skincare products and willpower. It really struck me how amazed he was to meet the Sue Marsh you guys know when he's used to "Dave's poorly wife"
I have to admit I read the second paragraph and thought "Is she talking about me?" (Apart from the fact my kids have flown the nest)
ReplyDeleteA ticky-box assessment has never and will never be an acceptable system for deciding if a person needs help. Too many factors weigh on the decision.
The DWP descriptor of "Can the claimant lift an empty box?" is a prime example. What size box? Matchbox, cigarette packet, cereal box, shoe box, packing box that would hold 36 cereal boxes. bigger?
It's as bad as can you jump? How high? One inch, one foot, one metre?
Conditions are as different as the faces of the people that have them. You cannot slap a label on peoples' disabilities as easy as saying "That's a Ford Focus" (other vehicles are available). This should be respected. Bring the GP and other members of the NHS back into the loop. If a GP and Consultant/Physio/Psychiatrist says "Not fit for work" that should be good enough. If they say it's going to get better, then a re-assessment by the NHS should suffice not by some snapshot assessment by a private company.
anything for the ego or an , earner marsh will be there, amazing how she gets all these places to meet the low life of her party and the rest but relapses when she doesn't need to
DeleteMakes me want to cry. And as I finished the blog DC came on the tv to speak. I had to scream to B to change channels. I can't bear to watch any of them. You are a shero. Or hero. Whichever you prefer.
ReplyDeleteI do not understand why they cannot help you. So I will tell part of my story. when Dani was diagnosed aged almost 5 I was about to start my degree. Nearly didn't but her consultant told me to get in touch with SS - I did not want to as a careleaver I had my fill of Social Workers.
ReplyDeleteEventually I did, explained my situation to them and bless them they came up with an amazing package, they found my children a part time foster family - no my children did not leave home, Ron and Barbara would pick the girls up from school the afternoons that I was late from the Poly. They would look after Dani's sister whenever Dani needed to be in hospital. On top of that they cared for me, they would make me sit and take time over a cup of tea when I got back from Poly. It was thanks to them that I managed to finish my degree. They became part of our family, honorary aunt and uncle to the girls and a firm friend to me.
When we moved they could no longer help. When Dani had her transplant I fell apart and really became very depressed (anesthetics do awful things to me) again social service were called in and again we got the support needed in a visiting lovely lady who helped me get through that black time without losing my children. This lady was not a social worker, not even sure if she was a paid support person.
Without that help I am not sure how we would have survived.
It seems to me that you need that sort of support, someone who can see your children to and from school and who can be a support to you whenever you need it. This sort of support should still exist. You say they say it is not the children's dept's problem because they are not disabled - but they are they have a disabled mum who needs some practical help keeping it all together.
It is bad if you cannot get at least a little help - I know that home-helps have disappeared another good system long gone.
I so hope that you can find some one to help on a regular basis - you need and deserve it.
I'll second that. Watching you at the Labour conference speaking out, I could've almost reached through the screen to hug you as you said your piece. Fluctuating conditions are the absolute bane of my life too. I'm still paying the price from walking around Manchester on Sunday with, I dunno, 65,000+ friends? It was good doing something that needed to be done.
ReplyDeleteWe are the reason why this govt can't go on like it is doing. In our own way, we accomplished what we thought wasn't possible for ourselves when it mattered. I'm sensing that you had to cross the pain barrier too. It hurts, but it matters and sometimes, you just need that pain to remember why you're where you are.
Kudos to Sundays protestors. Kudos to you Sue. In an ideal world, we wouldn't have to do this... our paths wouldn't cross and none of us would be reading your brilliantly written blog.
Some of us are just waiting for Karma to 'do her thang' to those despicable Etonians.
Wow - Sue I didn't realise how much of a similar situation we are both in! I am disabled / fluctuating, also with 2 kids/ school run to contend with. How splendidly you describe the SS ping-pong between Child / Adult Services... How refreshing would it be if they were just honest and said that they were under immense pressure to Never take on any new cases Ever [unless there would be clear legal negligence issues otherwise]..?
ReplyDeleteTho I am divorced, and had moved to a new area via a refuge, so had no fam / friends at all :( So much wrangling with transport appeal committees & social workers of doom.
Sad to know that it is only lack of funds that prevents things from being so different...
<3 x x x
Ugh....I used to be a social worker in adult services. Whenever issues about children came up, the managers said it wasn't our problem. BUT the Fair Access to Care Criteria state that being unable to sustain a 'parenting role' means you meet the criteria for support.
ReplyDeleteIf disabled parents were supported properly by adult services, there would be no need for children's services to become involved.
Children's services are right, they are not the ones to be involved here. But adult services should step up to the mark. Just because they don't often come across situations involving child care arrangements doesn't mean people such as yourself are not entitled to support.
I am so, so lucky in that it is rare that I am unable to collect my son, but it has happened. And I know all too well that sickening feeling at a WCA when you're asked if you can *really* look after your children. If you're "fit to be a parent".
ReplyDeleteIt's wrong, so wrong.
I know how you feel... I have repeatedly been told that the only way I could get a care package from social services for parenting support was if my children were assessed as suffering from abuse or neglect. People kept trying to offer me services for disabled children. It was really hard for them to comprehend the idea of a disabled parent - as though the idea of me reproducing was distasteful.
ReplyDeleteI got information from the Disabled Parents Network at the time. Don't know if they still exist. They set out the rights of disabled adults with parenting responsibilities clearly.
Now I'm lucky. My children's school has been brilliant. The head arranged a system for a teaching assistant who lives in my street to take the girls to school when I can't. She's even offered them a free place in after school club for when I can't look after and feed them. The school employs a Home-school Support worker who does all she can to help. We only live 200m from the school.
Funnily enough I have a lot more support now that I'm single than when I was married, even though my health was worse then. The idea that you're less disadvantaged if you have a partner just places so much strain on a relationship.
I really know the tears, the humiliation and the pain of being able to be the mum to want to be
Hugs
x
oh Sue that story could be mine. I was lucky that I found an obliging childminder and Mum moved in but I faced scrutiny from Social Services as to my parenting ability that I still panic about. It went like this'If you can't look after your self/manage illness your kids would be better off in care. Bear in mind this was the 1980s and 'care' was a pretty dreadful place. The lowest point was when the children were sent to a child psychiatrist to see if my Ill health had affected them. The kids and I sat in the bugged waiting room for an hour. My son pointed out what was going on. And the relief when we 'passed' with flying colours was the best feeling ever! But it should never have happened. The extent of my disabilities should have been accepted. Be strong Sue you're not alone!
ReplyDeleteSue I cannot express my disgust at the institutional abuse of your children. But may I make a suggestion? Could your local Volunteer Bureau or Befriending service get you a volunteer to help with the school run? I know the one I used to work with did this sort of thing. Maybe worth contacting them to see if they can help?
ReplyDeleteI was going to say this by email but I'll say it on here in case it helps someone else. This was a problem even when Councils had *enough* money; I was involved in policy development re support for disabled parents, both locally and nationally, from about 1998-2002-ish and then again in about 2007. The issue of transporting the kids of disabled parents to school and back has always been really difficult but it shouldn't any longer be insurmountable, although you'll have to fight.
ReplyDeleteAdult social care services have a duty, under Fair Access to Care Services, to meet the eligible support needs of a disabled person to undertake their parenting role. I don't know which eligibility band your council uses to assess which needs they meet, but I would think that your needs as a disabled parent are at least substantial (in respect of supporting your children's education) for much if not all the time. Your boys are of an age where it would be reasonable for them to need a parent to take them to school and back, and you can't do that without support. I would think it entirely reasonable to meet that need by paying for a PA (with the appropriate checks) to push you to get your boys and push you back, or to do the job themselves when you're not well enough to join in.
So you need to fight this. I would be more than happy, especially given my background in policy development, to support you to do so. I'm guessing you'll need to follow this course: (a) put in a formal complaint to the council, (b) take it to the ombudsman, and probably at the same time (c) seek legal help. I know a solicitors firm in South London who are brilliant at community care work (I've used them for this on behalf of a neighbour I support, when our LA was behaving unreasonably) and if you're eligible for legal aid they should be able to help you, probably by writing a stiff letter to the council. Your council should not be allowed to get away with this. End of. Not having it!!
So sorry to hear this, I have been there and know exactly the toll it takes.
ReplyDeleteThanks for all the help guys, I'll definitely let them know I know and see where it goes from there xx
ReplyDeleteOne thing no one seems to have mentioned is talking to your local councillors, whether that be for your own ward, the relevant portfolio holders on the council, or any other councillor you might just happen to have influence with as 'a tribal leftie'. My father was a senior council officer, they all hated being in the path of councillors with a bee in their bonnet. Even without any particular connection you can get the system to work for you - my sister managed to get a planning application turned around last year by contacting their councillor and pointing out all the issues that hadn't been discussed in the paperwork presented to the planning committee. And just to put the fear of God into Social Services, I'd say you potentially have a Comment is Free article here.
ReplyDeleteSue admire the work you do,and follow all of your blogs. A family single parent mother with 2 children at different schools 5 miles apart, lives in a rural area no public transport.gets one to school for 8.30 one for 9.50 and herself to work for 9.30. Three nights a week family and friends collect children , 2 nights a week mom collects by leaving work early and booking it against annual leave. She has been told that if she was on benefits the children could be collected and returned in the evening by taxi,but because she works in order to keep her house she can not be supported. there is an after school club at the primary school but not at the secondry. She also hates having to ask family and friends to help out,but really does not have a choice. I am sure your friends do not mind helping out as they understand your situation. Also maybe your husband could do the same as my daughter and allocate the hours he has to leave work early against his annual leave.
ReplyDeleteSue thank you for writing this blog post. I feel like this aspect of life with chronic illness / disability -- the involvment with SS -- is one often not talked about. The awful ESA / incapacity benefit stuff in some ways feels like a clearer, easier thing to talk about, for me at least. And of course politically that has to be the pressing concern at the moment. (I see one of your commenters above actually confused the two, presuming that this was about your capability to work, not your need for support. Perhaps that's because this area is often not talked about...)
ReplyDeleteWhen someone as respected as you are (by so many able-bodied people, as well as us!) talks about your experiences with the SS, it is very validating for someone like me. Though I should be used to the way these things go, the idea that you were treated like this feels outrageous. It makes me feel less crazy for finding the intrusion of it so hard.
Coincidentally, I wrote a blog post on Monday about my experiences with the SS, must have been writing at the same time you were! (Collective spoonie zeitgeist?!) I felt rather guilty about it when I then read this, because after years of fighting I'm now in a very good position with funding. I've also not got children - I can only imagine the pain of having to contend with that too, it really takes it to another level...
I know you're getting lots of great advice, but in case it's any use, I was terrified about getting a solicitor involved but eventually had to. It changed things very dramatically, funding appeared, and surprisingly the social workers were not unpleasant about it. I wish I'd known that before!
Good luck with this Sue...
In case anyone reading this is interested in reading my post the link is below, but don't expect it to be as good as Sue's!
http://inbedwithlucy.blogspot.co.uk/2013/10/the-ss-review.html
Bless you! I know all about the system and children social services too. There isn't a way to describe what they do, or don't do, that sums up how they make people feel. How they do more harm than good. The system is needed but it doesn't work properly.
ReplyDeleteFortunately the system is gone for us now my youngsters are over the age of 18.
Agrees with Lucy above. You are so brave to speak out. In a world of people who stereo type and sneer about people involved with children SS, I know how it feels.
Thank you
The poor, the disabled, the unemployed and the Working class have been abandoned.
ReplyDeleteIn my experience, the looks of confusion spread far further than just SS ... I was sole carer for my disabled extremely ill husband for many years, and our situations have in the last few years swapped (I'm now the main one who needs care, he's still disabled, but the illnesses that were hospitalising him regularly are at least currently under control). There's plenty of help out there for people with disabled children (as there should be), but very little, if any, for disabled people with children ... be it SS, NHS, education, housing (the local council once actually tried to house himself in a 1-bed disabled flat, and me and the kids on the other side of the city in an inaccessible-for-him property, because there was no such thing as an adapted family house in their stock) ... any area of life you care to consider.
ReplyDeleteWe've been lucky so far that there have only been a handful of days where the kids have had to miss school due to neither of us being fit enough to get out the house (even if the journey was the only thing that happened that day), or because of hospitalisations etc, but they have suffered in other ways, with stress and insecurity of seeing their parents ill, missing out on things many kids take for granted like walks in the countryside, trips to semi-'active' destinations, being able to have their friends round for tea ... silly things most families don't even have to think about. And asking for help, even just a little emotional support now and then, just gets blank faces because we don't fit in a box ... or we're coping SO well.
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