Registering a child as disabled

[SparkleRainbow]

What are the benefits if any for my ds if I look to formally register him as disabled. He has a physical disability which affects him to a greater or lesser extent at any one time. Sometimes he is bed bound, or unable to walk, other he appears relatively " normal". He does have a life threatening condition though. Dh's work are not at all supportive, he in a senior manager and got a informal reprimand for asking permission to leave a four hour meeting to quickly make a phone call to see what had happened about his ds being rushed to hospital in an ambulance. Would a formal label allow him to access more statutory rights...sorry I have no experience of this at all... thank you for any help in advance.

[mariagoretti]

You usually get discount swimming at the council pools. A card that 'proves' the disability is real. Can apply for a radar disabled loo key. Might help the work issues for dh but tbh if dc already has a statement or dla or a significant diagnosis, that's probably enough for work to have to consider flexible working / not discriminate.

[SparkleRainbow]

He doesn't have statement or dla, thought I would need to register him as disabled to get either of those. As it stands at the moment dh is the sole earner. That has been through choice so far, as baby is only about to turn two in few weeks, but as it stands I couldn't go back to work anyway, with hospital appointments, and emergency calls from school and to hospital.
He has a significant dx which medics recognise is life threatening and life disabling. Doesn't help that they can't find anybody in the country with experience enough to help ds, or to advise us on management and prognosis.

[r3dh3d]

Not a lot. The disability register has 100% changed from what it used to be, and "registered disabled" is now meaningless.

Once upon a time (when my grandmother got various benefits) the council held a thing called the "disability register" and in order to get DLA or similar, you went to your GP, the GP got someone to examine you, and on the basis of that examination the council decided whether to put you on the disability register and what benefits you were entitled to.

A while ago, the govt decided to centralise this, and in particular make all the DLA decisions centrally. So the key benefit is DLA and the main "sign" of being disabled is whether you get DLA or not which is now done in central government offices and nowt to do with the Council. Things like blue badges etc. and other things like eg getting a carers' pass at legoland are now most often based on production of a DLA letter. Some places still say "on the disability register" but it's mostly just they don't realise it's obsolete.

Many councils still keep a "disability register" but it is more for their own records: allows them to be comfortable their Social Workers and Health people are all aware of how many disabled people they have and where, and also it allows them to administer minor local schemes like cinema passes. But it's entirely optional and there are plenty of people in receipt of DLA not on any "disability register" and I think quite possibly councils that don't formally have one single register any more.

The other change is that neither DLA nor the register convey legal rights, because the test of legal disability seems to be a common-sense one: ie if you are disabled from doing day-to-day things, you are disabled, regardless of whether you fill a form or appear on a list. Your son has rights by virtue of his disability. Your husband has rights as a carer at work by virtue of your son's disability. Though being on some register or, more powerfully, in receipt of DLA, will make his disability more credible, really all your husband has to do is to make it clear to his HR dept that he is caring for a disabled child and that is sufficient.

Ditto statement - though medical diagnoses are helpful to get statements, if the child's education is impacted then they are less able - disabled - educationally and you should be able to apply for support, potentially to the extent of a statement based on the result of his condition, ie how it affects him, without needing to prove the cause.

[SparkleRainbow]

Thank you so much for that, you have explained that so well. Do I need to get the gp's support in applying for dla, he would be supportive, or is it just a matter for completing the forms, and seeing if someone who knows nothing about him or his condition deems him "worthy"

I will get my dh to investigate what his company says they do to support carers on their information website..he works for a large utility company...so they probably "say" lots of things and do nothing. He is employed to work a 37 1/2 hour week, but like the rest of the country the "anything else the company deems reasonable" actually means 75 hours every week, and weekends and holidays too. Not that I am bitter or anything.

[mariagoretti]

Statement from education dept and dla from dept work & pensions are independent of registration, which is the town hall. Depending on dr's judgement, you might get as DS1500 off the GP or specialist which means you get higher rate care & mobility straight off, no waiting, & can skip most of the pages on the dla form. It's a bit depressing, DS1500 signifies that disease is progressive / prognosis poor. But most drs give it when there's a real chance of problemsratherthanacertainty

[SparkleRainbow]

Thanks for that, I wonder if he would be entitled for a DS1500, it feels so uncertain because the doctors aren't even sure what they are doing at the moment....I wish someone knew what ds's prognosis actually was

[r3dh3d]

Well, applying for DLA is a big job. If you trawl back through just the last few weeks where the form has been discussed you will find many of us sending our applications in in ring binders or enclosing twenty-something backing documents or whatever. It's a hard slog to fill in and if you've no experience filling it in you need to take help wherever you can get it. There are various online guides for filling it for different conditions, and support groups often have people who help. But if you've got an unknown condition it's harder to know where to start. [sigh]

The basic principle of the thing is that it grades your child's level of disability based on how much help they need; this is done by comparing them to a typical child of the same age - what can that child do that your son can't? - and then working out how much time that extra help takes you as his carer(s) each week. That sort of adds up as points and then they allocate you into "buckets" depending on whether that's worth higher, middle, or lower care rate and higher or lower mobility. And you are paid a DLA amount based on the bucket you fall into. That's the theory. The practice is that the DLA form is evaluated by fairly low-level clerks and it's hard to get across to them the full practical impact of the child's condition and they often discount what you say if it doesn't match what they are told is probable. So a huge % of claims are either rejected or downgraded first time round and many of those go to appeal and win on appeal when someone more experienced looks at the evidence. So not just a big slog, but you're likely to be knocked back first time.

I think your first step is talk to the GP; although you (or whoever you get to help you) fills the form, there are 2 sections that need to be filled in by a "witness": one by someone who sees the child often enough to vouch for the level of care you give them, and another who knows the child's medical conditions well enough to attest to them. GP or paediatrician or lead consultant usually does the second so you'll need to talk to GP or whoever before filling the form. They should be able to say whether they can help you fast-track the application with this DS1500 thing, and maybe also could say who locally could help you fill it. Tbh, I wouldn't fill it in on your own first time round unless you have a good grasp of the medical ins and outs and a very good head for forms.

[SparkleRainbow]

Thank you both so much, I have a much better idea of where to start now.

[roundthebend4]

sparkle first point is get the dla forms thats the first step to any help could see ds should get least lra moblity and care and every bit helps

the DS1500 thing is only normally for terminal condtions needs be fille din by speaclist and that states your life expentcey is less than 6 months know as we did when my dad had terminal cancer

[roundthebend4]

out of intrest i filled in form just as was knowing they would contact ds nursery they did , infact his renewal now was easier than his first claim as they compared him to a 5yo rathe rthan 2 which was whenfirst started claiming

[SparkleRainbow]

Thanks for that rtb4 - did you name eds in the paper work, will it matter that no-one will have heard of it of is it just based on his actual symptoms? Sorry to be a pain, it is just that I know from reading threads on here how difficult and frustrating the dla process is, and I am not sure if it is even worth starting down that road.

[roundthebend4]

no it was listed as hypermoblity syndrome and low muscle tone as we did not have the dx of EDs but i did fill in what he needs help with etc.We was lucky in that ours was given pretty easily did not have to sumbit tons of extra reports

But think some of it is because Pd more obvious than Asd especially when more high functioning

[roundthebend4]

sparle phone get the forms you never know and im going ne honest the extra money had made huge differance to ds

[LucindaCarlisle]

It should give you easier access to additional services and support.

Most parents of children with special needs complain that the various agencies do not provide an integrated service. Many children are just not getting effective support.

[SparkleRainbow]

Have phoned for the forms, you have inspired me that it night be worth it, and we might get help, any help would be good.

[user1491220280]

Does anyone know how I can register my child as disabled please? He has a rare case of dwarfism which hasn't much research as to how it will affect him now or later on in life because it's so rare & I just wanted to know how to go about doing it please? Thank you