Here are some suggested organisations that offer expert advice on SN.
SS say my child is not disabled(26 Posts)
ah we have dx but its not the right one apparently
here you need asd dx normally to get help or severe physical diffculties
They do have criteria about what counts as a disability in the area and yes, it needs to be formal...but, as you say, it is totally unfair. They are allowed to have criteria, BUT should be following the child in need model where a high level of need requires some services. Unfortunately, the doors will only open easily when you have that dx in writing. Is it worth ringing the paed or whoever and begging for a written dx to be sped up? That's how J's dx came quicker than the norm - psych knew that so many things (SS help, Statement changes) were pretty much dependant on the formal dx, even though they shouldn't have been.
I asked the same question! When I first rang SS for help, was asked what his dx was and what his difficulties were. I said ADHD plus possible autism (as it wasn't yet dx'd - still waiting for ADOS at that stage) and that he was extremely violent, destructive, dangerous and unhappy and that both of us were suffering and in need of help.
SS said he didn't meet disability team criteria as ADHD was not a complex disability and therefore would not assess him. I kicked up a fuss and spoke to the manager who repeated same. He said to ring back when J had a formal dx of autism and that autism was accepted as complex disability. I wrote a shitty letter saying that ADHD was a disability in the eyes of the law and that they therefore had to do an assessment regardless of the lack of autism dx.
They did eventually give in because I went through the formal complaints process. They assessed and I told the SW that he was extremely violent, destructive, dangerous and unhappy and that both of us were suffering and in need of help...again...and that those needs would be the same whether autism or ADHD or both. She said that hekp had to be reserved for the neediest . Then, a week later, the formal autism dx came through!
We had our initial visit last week.
"DD1 and DD2 are in a 'me, me, me' phase. They need to learn to occupy themselves".
Yes, DD2 is 23 months old, and DD1 has GDD!
Use DD1's DLA to pay for a childminder - they are cheap, only about £5 per hour.
SW didn't know anything about respite, or other services, forgot the leaflet she was supposed to bring.
DD1 was spreading sand over the floor, sprinkling it over DD3's (13 week old) head, etc.
I bet when we get the paperwork through, DD1 won't be 'disabled' either.
Remind me why there is a blue badge sitting on the shelf, and she gets High Rate DLA? Amazing that SS can overlook these things.
We've just gone through something extremely similar as you know. We had exactly the same thing about our DS not being disabled, we don't have a formal dx either - but we do have a verbal dx - all sounding familiar...
You do just sit there and think wtf - how can you say he isn't disabled.
Have you seen the assessment - if so ask to see it. If they say no - ask them why you can't.
Was the person you saw a qualified social worker? We saw a "family support worker". She was rubbish - we eventually, had a second assessment, at which the social worker openly laughed at some elements - "opportunities for social interaction...lives near Asda" - eh?!
The disability issue will be an issue of "point scoring" - they had a checklist, they ran down it and scored us 1-5 on each element. It was all wrong. The senior manager eventually re-did the checklist with the help of our SaLT. It was still wrong in places, but the score came out much higher - and "Hurrah" - DS is disabled...
I'd ask to see the toolkit. You have a statutory right to ask to see your social services and health records. If you mention that you're thinking about requesting "access to records", they'll know what you're talking about.
Is there a professional you have a good relationship with who could talk to the social worker about how your DS might fit into their toolkit.
I'd also start shouting - actually I wouldn't shout at all - I'd be very calm and very very argumentative. I'd also start the formal complaints process - call the complaints manager tomorrow.
Not all areas will use toolkits. Mine doesn't.
I think seeing it as round 1 is very sensible and oh so true, as with everything in SN world!
I am sorry if I am wrong, but doesn't your DD1 have epilepsy?
That was my main (victorious) point to SS purseholder, I would NOT EVER leave my DS with a babysitter (tho I can't imagine there are teenagers who would work for £5 an hour) and CMs trained to administer emergency epilepsy meds cost around of £40 an hour , so how does DLA stretch to that exactly?????? What could you do for 1.5 hours and how do we pay for anything else?
Makes me sooooooooo bloody angry!
Keep at it, my round 1 was back in February, and I think I have gone the full 12 rounds since! But I won, and since my little victory last week, they cannot do enough for me.
Lou again, I apologise if I am wrong, but we are going to be given access to the community nurses, who also provide respite help (we are hopeful to get 1 or 2 overnights a year, we really don't need any more) for children who are ill/disabled and require medicating. I can't imagine this is just a Welsh thing, maybe worth investigating?
Also, Barnardos provide a free, volunteer sitting service (with a curfew I think - too tired to stay out late anyway ) who can give you a break. We are being referred to them too.
Funnily enough, all this info has been very forthcoming since my temper tantrum last week. Really, they are falling over themselves to help ATM
Hope it can help everyone else too.
feelingbetter, yes, DD1 does have epilepsy, but she 'only' has drop attacks (although none since January) and absences (they have crept back in so she has been put up on her meds).
Will look at Barnardos, thanks!
god this sucks. Really can empathise with you - they did the same 3 times with my dd who has no mobility, sld, no means of communication other than facial gestures/ smiling / crying, is nearly blind in 1 eye, moderately deaf, is tube fed and has loads of growth / medical probs. Oh and has diagnosis of 2 chromo abnormailities, leukodystrophy and suspected glycogen storage disease!
I got turned down, as did referral from dd's community nurse and GP. Didn't meet the criteria of disability apparantly
Her paed wrote a very arsey letter in the end - we discussed this on the weds and by the next mon they were at the door ready to do an assessment
Is their anyone at the cdc who will write and do the same for you? Can you request a CAF (Common Assessment Framework) Have you had formal assessment that they are basing this decision on> They have a legal duty of care to at least do that (this is what they wouldn't even come and do for us)
ach, loads of kids aren't disabled enough to meet local criteria here. here you have to have other extenuating circumstances as well - households with two parents rarely qualify for anything. here you have to be a lone parent with and additional issue (eg alcoholism/ drug use) before they are willing to seriously consider whether you need help. i sat and listened to the chief exec explaining their hierarchy of need and how it works and was frankly appalled. to be fair though, it is all down to funding, which is why they don't even glance in your direction before 3 yo.
dd2 was dx before she was 2. never seen hide nor hair of ss in 6 years, except to confirm that she wasn't eligible (despite the high rate dla and blue badge lol).
actually, these days that suits us. we don't need respite and i'd rather they kept their noses out anyway. it doesn't make it any easier for families who are on their knees though.
we are 'not disabled enough. that's fine, there are those in greater need.
Our family don't meet the criteria either two with moderate autism (high care and high mobility) dh on chemo and three other dc.
Not sure how bad things have to get to get help?????
pixiemason - your description of your daughter's needs puts me to shame a bit. Shocking to know that there are many children with greater needs than DD who are still not entitled to help.
madwoman, I guess at least you are getting the help you want
reading this thread makes me realise i am actually VERY VERY lucky with the help we have had from SS. DS has had paid respite since july last year. In term time he has been having 5 hours a fortnight at a playscheme (every other sat 10-3) and this holiday we have been awarded 12 hours per week with a childminder who specialises in ASD and also have 3 weeks where DS is going for an extra 10 hours in a playscheme.
for the next 2 weeks DS is in respite for 4 days a week.
We only get middle care and low mobility for ds but main reason for respite is to give DS the opportunities to socialise as he is in a private school where there are only 12 pupils in whole school!
We got referred for help after the assessment. Waiting for final decision from complex care team and hospice. Would not be able to get DP on top of that -its very much an either / or thing. The complex care should hopefully provide us with nurse 2 nights a week in our home. She may need carer to go to school with her - cannot go off site without nurse at the mo so has missed many school outings / trips (we have gone where we can but not that feasible long term)
Hope my posts don't come across all top trumpy. No one's needs should be negated by another. Firmly believe everybody who needs help should get it. Makes me cross that for everyone, whatever the issues, it seems to be a fight. Like you say, rounds of being fobbed off
Social services are an absolute nightmare for me at the moment. My three ds's have asd, at various points on the spectrum. My 6 year old was supposed to go on a holiday playscheme, apparently they 'forgot' to ring me about it and now too late, he should be getting 3 hours every fortnight, on a Saturday and have heard nothing about that. My 4 year old is considered 'too difficult' and there is no-one qualified enough to take care of him, and my 2.8 year old is too clingy to me apparently.
We have just had to move to temp accomodation, had a cockroach infestation, and stupid sw said how lucky we are even though she saw my 4 year old standing in the garden (which dh had to clear up and make fit for the kids to play in, was a wild-life resort previously) screaming and crying, because he wanted the old garden back, my 6 year old pacing up and down with his ipod, and 2 year old refusing to walk on the floor. On top of that am 32 weeks pregnant, and slowly going mad, have myself developed a phobia of insects, and social worker thinks we should be happy. She phone recently to let us know she was on leave for 2 weeks, dh spoke to her, I can't be bothered.
Now I have swine flu, and yet that is not so stressful as everything.
OOOps! Sorry to hijack your thread and turn it into general rant about my life.
Yes, social services are shit, and seem to make it up as they go along.
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