I will not beg social services for anything

[Wispabarsareback]

Hi all, it's ages since I've been on MN. Haven't forgotten about you though.

My DD2 had her diagnosis of Rett syndrome confirmed in June. The NHS has been OK mostly. But the council is making me cry. I'm pretty depressed - up and down, but definitely down today.

DD's paediatrician referred her for an assessment by the disabilities and complex needs team (social workers). Within three days of the referral letter, we received a note back from them saying that they exist to support children with severe disabilities, therefore they would not be carrying out an assessment of DD. We wrote back congratulating them on their optimism and offering them more information. And highlighting that even though we don't need social care support at this point (DD is 2), we probably will in future - and if the disability register exists to enable local authorities to plan for future needs, then DD should definitely be on it now.

We had no reply to this letter, so having left several phone messages I finally got the duty social worker on the line today. He recalled my letter but clearly hadn't read it, and was just programmed to repeat the same thing over and over. 'So why do you think you need social services?' 'But in what way is your daughter different to other children of the same age?' Oh, where to start. I told him to eff off in the end - not the most effective way of influencing the local council, I do realise, oops.

We've also received a letter in the last few days informing us that the SEN section of the council's education dept won't be carrying out an assessment of DD, as requested by her paediatrician.

I always assumed that as a parent of a severely disabled child I'd need to battle for her to get what she needs to some extent - but I'm horrified at my reaction to our recent encounters. Tonight I feel very strongly that I will not beg for things - DD has been referred by her paediatrician, who knows her well and understands her condition, and the bureaucrats at the council won't even assess her.

It seems to me at this point that the best thing is for us to put our energies into earning enough money so we can pay for whatever DD needs, rather than having to 'ask' and being rebuffed in the way we have. What's upsetting me so much about the social workers is the implication that I really want DD to have a more severe disability than she's got, and that I'm trying to blag some service to which I'm not really entitled. I'm in pieces about that.

Sorry to go on at length. Any thoughts? I know it's a long game, but I just want to hide away from it all.

I threatened to walk out on my children. Didn't work. We were offered a social worker to chair a meeting between me and my dh to point out to him that he should be doing more to support me.

We were offered the chance of a SW after we pointed out that ds1 was extremely violent..... from CP services, the offered help was putting him in a CM setting where there were several small children and a CM with no ASD experience.

Er- no.

I asked to be shown residential homes for dd. That made them sit up!

I did the same thing, Riven. Respite followed.

Thanks to you all for excellent suggestions and all-round moral support. Sorry to disappear for a bit - it's been a bit of a full-on 24 hours. (DH and I decided to venture out bravely last night to celebrate our wedding anniversary - and we'd been out a good couple of hours before the babysitter called to tell us that DD2 was puking everywhere. And there's been more today. I do think the constant puking is the worst aspect of day-to-day life with DD2 - it makes me want to scream.)

I've collected my thoughts and of course realise that I've just got to keep on going in terms of making the various agencies understand. Somehow I'm going to have to find a way of remaining calm when wanky social workers make wanky statements. Had a bit of a breakthrough late yesterday when the manager of the disabilities team phoned me to apologise - repeatedly and at length - for the way the duty social worker had handled things. We have agreed that DD will have an assessment early in the new year. But she said that the disability register 'doesn't make much difference' (probably true, but depressing nonetheless). And they clearly have an issue with referrals from paediatricians - she told me that her team receives way too many 'inappropriate' referrals from paediatricians (possibly true, but really not my problem - an issue for the professionals to resolve between themselves without dragging parents into the crossfire).

Ho hum. Onwards and upwards.

Absolutely the right attitude Wispa. When people tell you about problems in the 'system' they are wasting your time. Why are they telling you? What exactly can you do to help them and why in the world would you anyway? The only thing you can do is say 'poor you having to work for an ineffective and overstretched organisation, - tell you what, forget about my child and put your feet up with a glass of wine', - which obviously you'll never ever say.

It's hard not to panic, but it is a marathon, not a sprint.

Bit as to why the disability register doesn't make any difference. I would be torn between saying 'in that case why are you so against putting us on it' and 'well why do you have one then?'. When you recover your strength, stick this one somewhere on your lists of priorities. Which ever way you look at it is is outragous.

One last thing, and I'll find out about it, but I am fairly sure they have to do an initial assessment within 7 days of you asking for one, regardless of whether they think you need on or not. I'll see if I can find out.

The Statement fight is a huge, not brief one - IPSEA are the best support for that one.

However, ime, the SS one is easier. "All" that one took for me was a letter to the Head of Children's Services and - lo and behold - we got an assessment the very next week.

This is the legal bit:

Under the Children Act 1989, a local authority has a duty to assess any child in need. Children in need are defined as children who are under 18 years of age and are:
? ?unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining a reasonable standard of health or development without the provision of services by a local authority?; or
? whose ?health or development is likely to be significantly impaired or further impaired without the provision of such services by a local authority?; or
? ?who is disabled?. A disabled child is defined as one who is chronically sick or has a mental or physical disability which has a substantial and long-term affect on the child?s ability to carry out ordinary day-to-day activities. ?Development? means physical, intellectual, emotional, social or behavioural development and ?health? means physical or mental health.
PART III LOCAL AUTHORITY SUPPORT FOR CHILDREN AND FAMILIES
Provision of services for children and their families
17 Provision of services for children in need, their families and others
(1) It shall be the general duty of every local authority (in addition to the other duties imposed on them by this Part)?
(a) to safeguard and promote the welfare of children within their area who are in need; and
(b) so far as is consistent with that duty, to promote the upbringing of such children by their families,
by providing a range and level of services appropriate to those children?s needs.
(2) For the purpose principally of facilitating the discharge of their general duty under this section, every local authority shall have the specific duties and powers set out in Part 1 of Schedule 2.
(3) Any service provided by an authority in the exercise of functions conferred on them by this section may be provided for the family of a particular child in need or for any member of his family, if it is provided with a view to safeguarding or promoting the child?s welfare.
(4) The Secretary of State may by order amend any provision of Part I of Schedule 2 or add any further duty or power to those for the time being mentioned there.
(10) For the purposes of this Part a child shall be taken to be in need if?
(a) he is unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining, a reasonable standard of health or development without the provision for him of services by a local authority under this Part;
(b) his health or development is likely to be significantly impaired, or further impaired, without the provision for him of such services; or
(c) he is disabled,
and ?family?, in relation to such a child, includes any person who has parental responsibility for the child and any other person with whom he has been living.
(11) For the purposes of this Part, a child is disabled if he is blind, deaf or dumb or suffers from mental disorder of any kind or is substantially and permanently handicapped by illness, injury or congenital deformity or such other disability as may be prescribed; and in this Part?
? ?development? means physical, intellectual, emotional, social or behavioural development; and
? ?health? means physical or mental health.

From: www.direct.gov.uk/en/CaringForSomeone/CaringForADisabledChild/DG_10027594
The Children Act 1989 and social care services

What does the Children Act mean for my child?
If you think your child may be eligible for services under the Children Act you can contact your local social services team for a ' needs assessment'. This is where a social worker will talk to you about the needs of your child as well as the needs of other members of the family, including you as a carer. You can discuss the types of service that would meet the needs of your family.
The assessment should be multi-agency (i.e. include consideration of health, social care and educational needs) and be carried out according to the Framework for the Assessment for Children in Need and their Families (Department of Health, 2000)
? Health and social care assessments
What services are provided under the Children Act?
There are a range of services available to children and families assessed as needing them and these vary between councils. They may include:
? short break services
? holiday play schemes
? care at home
? some aids and adaptations
? financial help (for example to pay for fares to hospital visits)
You also have the option of receiving a direct payment as an alternative to social care services provided by the council. This is a cash payment paid directly to you, so that you have the freedom to arrange and pay for services that you need.
If you would like your child to be assessed for services under the Children Act, contact your local social services, doctor or health visitor. They will be able to advise you on what to do next.

Not assessing the child's needs or your needs as the carer is discriminatory, based on the following information :

DDA 2005
21B Discrimination by public authorities
(1) It is unlawful for a public authority to discriminate against a disabled person in carrying out its functions.
21D Meaning of ?discrimination? in section 21B
(1) For the purposes of section 21B(1), a public authority discriminates against a disabled person if?
(a) for a reason which relates to the disabled person?s disability, it treats him less favourably than it treats or would treat others to whom that reason does not or would not apply; and
(b) it cannot show that the treatment in question is justified under subsection (3), (5) or (7)(c).
(2) For the purposes of section 21B(1), a public authority also discriminates against a disabled person if?
(a) it fails to comply with a duty imposed on it by section 21E in circumstances in which the effect of that failure is to make it?
(i) impossible or unreasonably difficult for the disabled person to receive any benefit that is or may be conferred, or
(ii) unreasonably adverse for the disabled person to experience being subjected to any detriment to which a person is or may be subjected,
by the carrying-out of a function by the authority; and
(b) it cannot show that its failure to comply with that duty is justified under subsection (3), (5) or (7)(c).

(2) It is the duty of the authority to take such steps as it is reasonable, in all the circumstances of the case, for the authority to have to take in order to change that practice, policy or procedure so that it no longer has that effect.
(4) It is the duty of the authority to take such steps as it is reasonable, in all the circumstances of the case, for the authority to have to take in order to?
(a) remove the feature;
(b) alter it so that it no longer has that effect;
(c) provide a reasonable means of avoiding the feature; or
(d) adopt a reasonable alternative method of carrying out the function.
3 Duties of public authorities
It is the general duty of every local authority:
_ to safeguard and promote the welfare of children within their area who are in need; and
See Section 17(1), Children Act 1989

This stuff in a letter might work - did for me.

Good luck.

Wispa When you are ready, I would definately challenge the waiting until next year thing. There are waiting lists enough without waiting to go on one.

I believe you are entitled to an assessment. I definately came across guidelines when I asked for mine, that suggested social services should contact you within 3 working days and then complete their initial assessment within 7. If you put your request in writing and deliver it recorded delivery I very much suspect you'll get the assessment. In all likeliness the assessment will lead to them saying you don't have any need and they'll come back next year but at least you have that round 1 out of the way and you will at last be 'known' to social services.

Then, when you are ready, you challenge the outcome of the initial assessment.

I am really sorry that this all sounds like a complete headache. I'd be lying if I told you it wasn't, but because it is so, you don't really want to hang around in hope, or take too long realising that every step is a fobbing off step.

I'm sure you're right Moonlight - thanks. And givememoresleep (yes please - me too!) - thank you so much for the enormously helpful legal summary. What a great place MN is (well, this bit of it anyway )

Good luck Wispa. Go as slow as you like, but do keep moving

Hi, I am one of those 'wanky' social workers! A disabilty one in fact - if you can bear to listen to me I have some advice .
If a child has a diagnosed disability then they are classed as a 'child in need' under the 1989 children act. This means that they are entitled to an 'initial assessment', which must be completed within 7 days once requested. You may be told that there is a waiting list (which there may well be) but this is NOT good practice and you are ENTITLED to an Initial Assessment within 7 days. If the assesment is not completed within 7 days then the social worker needs to explain why, and if this is not satisfactory then complain. Believe it or not, the social worker will not actually mind you complaining if it is a legitimate complaint - it may help them to reduce their ridiculously huge case loads (mine was 50+ at last count). Here's the issue - you can request an assesment but that does not mean that you will be entiltled to services. The assessment will inform the social worker if you are entitled, and if so what level of service you will be entitled to (e.g 4 hours outeach a week). I would not wait for an assesment till the new year - that is bollocks as you are entitled to one now, and to me it sounds as though you would benefit from some support now.
Bit of a marathon that! Hope it helps tho!

Hey hamster You're very brave.

What do you do when you are given eligability criteria for support and you feel you can easily meet it but the SW says in their professional opinion you don't because there are more disabled children in that band, - but won't tell you any other reason why they think you don't meet it, - even if you feel you have clearly demonstrated that you do. ? ?