Desperate - need advice about adult social services duty to support my needs

[DoubleLifeIsALifeHalved]

I am in an impossible situation & desperately need legal advice.

I have become disabled & am trying to manage my condition & stop it deteriorating.

I just cannot survive on the direct payments hours/ money the council is giving. Literally. I am fighting a losing battle & can't hold a life together any more, for me or Ds (2.5 yrs).

And they have me over a barrel threatening to get children's services involved, or if things are that bad I have to agree my child is at risk of neglect from me, or that it will be good for me for them to take him into care.

Problem is that the hours are not enough either in Time coverage for me, but also just in terms of getting the job done even within shorter hrs.

They gave me direct payments as the council themselves could not find suitable care for me, as their agencies are only insured for adult care & they cannot help me parent Leo or give me respite by taking care of him alot through the day.

I have spent £100s on trying to find someone & they just leave after a week / couple of weeks as the work is awful & my house is unsuitable & they hate working there. They are also not suitable for the job as its an amalgam of nanny/ housekeeper/ cleaner/ carer/ family support ... 11 hrs a day.

New carer has left without notice after two weeks, saying its too much work & not enough pay - fair enough (true actually), but she told me late sat evening when she was due in at 8am Sunday, which landed me in total crisis. Thanks :(

So now Ds has to go away again as I cannot take care of him on my own, (stays with my estranged parents who wont let me see him if they have him, & wont help me other than take him). I am hopeless & heart broken.

Bottom line is I cannot get a carer as the job is impossible, the council are pretending that it's ok they've given me 30 less hours than they originally said I needed (after my condition deteriorated lots as I wasn't getting enough help before that even). They are caught up in their own processes & budget plans, & won't even engage with the fact that as they are failing to support me enough, its driving me & my Ds into a tragedy.

All I do when carers are here is lie in bed & try to galvanize self to do everything that needs doing when they aren't here. I cannot start to manage my condition, I cannot change my awful gp, attend appointments, do daily Physio, or anything that will help me break this downwards spiral, because I have to over extert & hurt myself every single day.

When I ask the council for help, they refuse to even accept the problem. If I tell them a bit about how much I am struggling they threaten me with 'getting childrens services involved'.

They are giving me alot of hours already, but because it's taken every last ounce of health to get them (jumping hoops all the way), I just can't do it on less than them meeting all my needs, cos they are really needs, not wants as the social workers boss kindly suggested.

I can't do it anymore. All I am doing is failing slower, dying a slow long drawn out death instead of a quick one. I always have a plan, & push forwards, but this time I have nothing.

I can't see a way out. It's either plead for help & have Ds taken away from me, or... Or what? I don't know.

Any way legislation can help me? Do ss have to help me? Or can they take Ds away & then send their agency carers in for me? Oh my poor poor baby. I am living in hell.

[mumblechum1]

I don't know anything about Social Services tbh, but wonder where your child's dad is and what help you might be able to get him to offer?

Sorry, I know this is a tangent, but bumping anyway for someone withSS expertise.

[Whitecherry]

I don't know the solution

Your parents..... Is it possible to sort things out with them?

Children's services.... They are not monsters, don't be afraid. Maybe a consistent foster carer/respite care could actually help?

Your situation sounds awful, and I truly feel for you.

[BrittaPerry]

Is there an organisation for your condition? They can often advise and help with appeals etc.

[fluffygal]

Hi I am a 3rd year social work student so might know a little bit. Have you had an assessment of your needs? When you say the council, do you mean adult SS, do you have a care manager? Is it them that's saying they will involve children services if you don't cope?

[fluffygal]

Also agree with whit cherry children services will not run in and take your child, they will try every avenue possible to keep your child with you.

[fluffygal]

Here's some legislation: SS have a duty to assess you under section 47 of the community care act 1990. The following outcomes must be achieved : choice and control, health and well being, personal dignity and quality of life. This is quoted in the guidance 'prioritising need in the context of putting people first-eligibility criteria' which was issued under section 7 of the local authority Social Services Act. You are clearly not getting suitable care for your needs and they should be supporting you!

[DoubleLifeIsALifeHalved]

Well children's services keep refusing to look at it last year as Ds NOT neglected, only risk of neglect would be if adult services failed to support my needs which would mean I couldn't support his needs... But that logic seems to be ignored by adult ss & they use it as a stick to beat me & stop me asking for help.

I need legal advice to close down that threat & get them to focus on their job, not on moving budget over to children's services.

Signicantly in 2011 it said on the .gov site that a council can only assess a child as at risk of neglect if the parents needs are fully met by adult ss... However this was discretely archived in 2012 & leaves me panicked that the gov have managed to change this???

I guess I basically need to know: can adult services fail to meet my needs, & then argue that Ds is at risk of neglect (when I have collapsed as they aren't meeting my needs). How can I get them to take my situation seriously & help me without trying to take my son?

I know foster care isn't 'all that bad' & can be a useful thing in some circs, but how would you like it if someone kept threatening to take your child when you ask them to provide help for yourself because you are ill??? It's never going to be an appropriate option, but a sign of adult ss having reneged on their responsibility. I just need to know if they can do it???

Not to mention that by separating my child from his only strong attachment would be awful for him & not help me unless they provide more help every day for me I'll never get my condition under control & never be independent again... Or be well enough to take care of Ds again. Going down that route would mean no good solution for Ds (taken away from his mother & a v strong healthy attachment to strangers?!) & would not help my health.

Am terrified that as soon as people hear anything about children's services & foster care they have an immediate attitude that 'there's no smoke without fire', or 'it's the best place for him'... That happens with disabled parents (see barbados white paper on this)... As there is a very awful belief that physically disabled people aren't good parents Which can lead people into thinking the best place for children is not with their parents... I am terrified of this happening to my Ds. I am physically disabled btw, not mentally, & I need help with house stuff & my personal care & parenting & time to rest. The resting time is supposed to reduce if I can get my condition under control. Which is why it's so bloody awful that adult ss won't provide this & are basically pushing me into a spiral of deteriorating health & loss of independence...

Thanks for answering btw... I probably sound crazy but i have nothing left, no health, energy, inner resources... & it feels v real that the council (adult ss) are pushing me towards failing my Ds & ripping us apart. Some facts that may help:

• adult ss have a history throughout the uk of trying to get childrens services involved instead of meeting their obligations to the disabled adult. Ie support in parenting needs should be funded by adult ss, it's not replacing parenting or intervening in parenting... This is well documented & I manages to 'win' this particular fight 12 months ago when it first reared it's head. adult ss don't do this out of malice, it's a budgetary thing. However its a slippery slope as children's services help children, not adults, so once they are seen to be helping it means that there is an assumption around the child's welfare, even when parents have been forced into the situation as adult services refuse to pay
  
• i lost the key quotes to fight this & keep my councils adult ss on track, when the gov info on legislation/ policy got archived
  

• my council have no disabled adults social workers, as disability got folded into the elderly. My social worker is nice but has never helped a disabled parent before, she spends the rest of her job specializing in the elderly. I've been forced to go through the same processes they have for the elderly & they are totally unsuitable for the disabled. Aparently I am 'the only disabled parent' they ever dealt with (hummm, fobbed off the rest I suspect), & at a lower level they ate trying to help but are ineffectual as no one knows what to do or what their responsibility is towards me. The social workers boss has now decided to cap my care at a level due to budgets, which bears no resemblance to my actual needs. This means I have 30 hrs less than I desperately need.
  
• adult ss cannot provide help thru their agencies as the agencies are not insured for adults and children, & also have been awful (whole other thread), so I've been left with an impossible task to meet my own needs via direct payments. Which I cannot do.
  

• I've been fighting through bureaucracy & the elderly social care system for over a year. This fight, & all the failed recruitment attempts & the lack of care in place have taken their toll on my health & I've got worse, alot worse, not better as my prognosis suggested.
  
• If I had enough time & care I could recover from this awful time, then start doing the right things to stabilize my health & see how much better I can get it. There is a chance that I will be able to dramatically reduce the amount of care I need IF I can get health back on track. By providing the care I need now I may/ should be able to stop relying on them later.
  

Before my health deteriorated I thought it would take 6 mths, after a year of constant trauma & pressure on my health, it may take a year or more. If they carry on forcing me to live this way, I will lose the ability to manage my condition, look after myself, or my son.

It makes monetary sense for the council to invest now so they can reduce my reliance on them in the future, & the cost of taking away my son. BUT being short sighted & uncaring, they would rather fail to provide for my needs now & ignore the future (which is someone else's budget).

I need to know what to do, what to say (& not say) to them. i cannot let them do this to me or my child. But if I am not careful... They will, they are already doing it :(

[DoubleLifeIsALifeHalved]

Btw before I got ill I was a director in a marketing company & totally self sufficient. It's still a real possibility I can be again IF I do the right things now. If I don't I end up in poverty, & a huge drain on the state.

How I was before is not really relevant, but I find it helps people understand I am not a member of that large amount of benefit scrounging scum that everyone knows exists.

[MayTheOddsBeEverInYourFavour]

I'm so sorry things are so awful for you at the moment

I can't help with the legal issues though I'm sure someone knowledgable will be along soon, but I wanted to send my support

I'm sure you've probably tried things already but is there no chance at all your sons dad or your parents could take on more care of your son to help you? Would your parents be willing to have him for set periods and amounts of time so you could arrange your care around that?

I am very physically disabled myself, I am married and my DH is my carer and does all the care for out dc as well. I wasn't always disabled either, but once things got as bad as they are now I knew that if our marriage failed I would not be able to live alone with our dc. When I was first getting help from all the various sources I kept asking what would happen if I was alone with the children and they all agreed that there just wasn't anything they could put in place that would keep both me and them safe and well. I hope you get better answers because while I understand there are no easy solutions what you are going through is just so unfair

[RedHelenB]

At 2 1/2 what free hours of nursery provision does your child get? Are you getting paid for someone to be with you 11 hours every day? Maybe the money could be split up, so for eg your son could go to a childminder or nursery some days to allow a cleaner/ someone to iron in.

What can you actually manage to do yourself?

[fluffygal]

What area are you in? It sounds like they are not listening to you but it is right there in front of them to see! I was just wondering if there is an advocacy service in your area? They could provide someone to help you get your voice heard and could really push to get the services that you need. Have you researched any charities that could help you in order to top up the hours that you need? If some of its housework etc could homestart help at all? Just thinking of options that your social worker should be looking into if they can't get anymore funding through their manager!

[fluffygal]

Free nursery only starts the term after their 3rd birthday, although they are trying to bring it forward to 2. I know in child protection they can fund free nursery places before that, I wonder if that could be a possibility?

[TheAngelshavetheOod]

Free nursery from 2 is a possibilty if there are extra needs. Disabled sibling counts so surely disabled parent would.

CS could support under section 17 child in need but tbh they are probably right , everything's ok if you receive the right support ( so AS needs to kick in !). Respite care may help too but it's unlikely to be offered. I'm unsure at what point it would kick it that he could be classed as a young carer and support offered for him ( which in turn benefits you!)

Have you tried ( probably have) complaining and escalating it? Also try a solicitor .

[TheAngelshavetheOod]

Oh the HV here (so diesnt hdve to be CS)can refer for nursery places, it's 15 hpw term time or 10hpw x 50 weeks

[DoubleLifeIsALifeHalved]

Sorry my post re patents and h got lost. Was a full explanation, but for the purposes of now - assume they are both no go's.

[AgentProvocateur]

Don't know much about your situation, but I do know that you DO NIT have to accept direct payments, and you can get SS to organize your care package instead - either in house or through an agency.

[seaofyou]

Hi OP,

Would you consider contacting solicitor? If you are entitled to legal aid you mey well find a good solicitor to take your case on to make SS carry out there duty...a solicitor letter might be what is needed to give them kick up backside and show you are serious and the undue distress this is adding to your disability further prevents you making progress.

Just a thought?

I hope you get the correct help soon...there are people out their that will be right for the caring role...Gumtree is a good site to look at and I always found my ds workers with DPs on their. Goodluck I know how hard it can be (((hugs)))

[combinearvester]

I was going to suggest a free initial assessment with a community care solicitor, don't know where you live and how you would be funded but Bindman & partners used to be one of the best when I was working.

I also think you need someone (e.g. from a charity) to advocate for you generally, e.g. help you write the initial letter of complaint and escalate things up to the local government ombudsman as your first step - the process of all these complaints / potential legal action is exhausting.

I was also taught that what Agentprovocateur said is correct, that they can't make you have direct payments if you don't want them.

[DoubleLifeIsALifeHalved]

right, had a morning of trying to get them to take this seriously, and saying goodbye to my son :(

am having to step up the pressure BEFORE knowing the legal situation, which doesn't make me feel very secure or on top of things. i asked them what outcome they expected from this situation, giving me not enough help to support myself or my son, and for me to slowly and steadily get worse and worse without any hope of reprieve. And whether the outcome they could realistically expect from this would be good for either me and ds, or good for their budget.

have had no reply yet.

why is it so difficult for them to see i need the 'investment' of hours/ care now, otherwise they probably will then have to pay for round the clock care for me and constant care for ds. but if they just helped NOW (or 13 months ago actually), then they could avoid that - and the huge expenditure it would create :(

[DoubleLifeIsALifeHalved]

sorry not being good at answers questions.

What can i do for him?

i can hug and kiss him, read stories and sing to him, reassure him and love him, do his bedtime routine, teach him songs and music and clapping games. Tickle him and make him laugh. Change his nappies (though not every time), i can make him his milk and play games and puzzles and basically most things... as long as they are in bed. i teach him to count, and the love of reading, and to make up songs and poems (fun ones!) and express himself. I can show him how to love himself and believe in himself and give him a stable, strong and forever love of me, his mother. I can teach him manners, and how to take turns, and deal with feeling angry and frustrated.

I can't look after him all day, although if i ever get a bit better i will be able to. I can't carry him (although am forced to every night due to lack of care), i can't run around the park with him, bath him (although i could if i had enough other help), potty train him, sleep train him, brush his teeth or take him out and about. I can't pick up toys he drops or constantly be bending and twisting to be able to interact with him (although i do anyway).

What i need someone to do with him specifically:

to retrieve him from my bed early in the morning, so i can stop hurting self whilst co-sleeping, and someone to transfer him to bed at night after he's fallen asleep on me. I need someone to take him to and from nursery 2 days a week (all i can afford/ access at the mo), and to cook meals for us both.
On non nursery days i need someone to do a combination of supporting parenting, where they are my arms and back and ready to help nicely conclude the activity and take him if i suddenly need to rest.

I have an INCREASING need for someone to take him whilst i rest, because i'm getting ill-er, and i need to rest whenever there is an opportunity as i'll be up all hours doing stuff that is bad for me later. so i def need lots of respite NOW but wouldn't if everything else was working ok.

so basically - i need someone to help me be physically doing the looking after, and not disrupt the strong bond he has with me. I am very careful and thoughtful about how i help him develop emotionally and mentally, and massively resent anyone saying i need someone to take over being his parent from me. The water is muddied by the respite i need - and that i need it due to the awfulness of now rather than forever.

[DoubleLifeIsALifeHalved]

need carers for more than that as i need them for me as well, not just for helping me parent.

so personal care, changing bed clothes, cooking, cleaning, keeping the house accessible and free of hazards for me.

also household and health management stuff, to help me physically pay bills, pay in cheques, wait on hold for gp/ consultants for hours, fill in paperwork, menu and shopping planning to budget, medications, prescriptions, physio, rehab, hydrotherapy, cut... in short accessing all the stuff i can't at the moment

[DoubleLifeIsALifeHalved]

going to look up solicitors, thanks for the name in a previous post

[AgentProvocateur]

I'm on my phone, as you can probably guess from my huge typo on last post, hence curt messages. I'll try and get on pc later in the week if I think of anything. Roughly, where in the country are you?

[DoubleLifeIsALifeHalved]

is that true agent? i almost feel like making them do it and then they'll see how impossible they have made it to find someone!

and yes sea gumtree was where i ve been trying to find people, but its just too hard as people want more money (or not to pay tax!) and less duties to fit into the hours. They also want a job that fits into current divisions of labour... so a housekeeper would never want to do the hard cleaning, and a carer won't be left alone with ds, and if looking after DS, they hate the supporting parenting bit and want to take him out all day (which means he then stays up til midnight as he needs to see me) etc. If the jobs were more defined and less onerous it would help.

Have had some lovely people start but they leave because the job itsnt nice for them - and its true, its not! this is what i wrote to the council about it:


The needs i have do not go away even if they are not provided for. The people I employ can see this and feel responsible for leaving me in an obviously unworkable position, which means they don't want to stay and watch this happen. The job/s are too hard, being multi-faceted, and crossing different sectors, so i am constantly asking people to do things that wouldn't be in their role had they taken another job. In addition I am constantly asking people to try and cram too many things into their working day, to try and abide by the councils hour limitations (which were not based on an assessment of my need, but budgetary issues). Their job is made harder by the house that is totally unsuited to me, having a family or having carers present. When people do the job/s they realise that the house makes their job very difficult, as well as effecting my health and functioning. They don't want to work in an environment which is unpleasant for them and makes their job harder. People don't want to work in a job where they have to compromise my care, or make me live in a way that they feel uncomfortable with

[DoubleLifeIsALifeHalved]

am in london agent