Here are some suggested organisations that offer expert advice on SN.
I rang my local council yesterday...(41 Posts)
....to make yet more enquiries about a blue badge.
Previously they told me that I could ONLY get one if Amelia was getting mobility component of DLA.
Well I thought I would give it another go, as I still haven't got my DLA forms sorted! I advised them that she has to wear AFOs and has now got a major buggy...and surprise....oh no she doesn't necessarily need to be getting DLA mobility!!! They have now told me that is a child is getting the mobilty part of DLA, then that automatically qualifies them for a bagde.
Otherwise you can apply by completing an application form.
I suppose it's just the luck of the draw as to who picks up the phone. On the 2 previous occasions I enquired, they were adamant that Medway would not give out ANY blue badges unless DLA was being received!
Still, we are one step closer! Just got to get the application form sorted and then wait for the relevant "medical proffesional" to supply more evidence!
Who do I put down to support the evidence. I am worried that if I put everyone, then I will be waiting ages before this is sorted.
Do I put down;
Peadiatrician- has seen since Sept
Pyhsio- just about to retire
Orthotist- not seen since November
GP- not seen for god only knows how long
Learning disbility team
shall I go on???
I 'make' the blue car badges as part of my job. It will probably be different for other areas but for our area basically anyone is entitled to apply. If they receive mobility allowance at the higher rate they get one automatically. Otherwise they fill in the application form - brief description of the disability and how far they can walk unaided. Then it goes to the care manager - if they can make a decision there and then they will, if not then we have a letter we send to the gp requesting further info and then when that comes back the care manager then makes a final decision.
We don't write to any other professionals only the gp. It maybe different in other councils thou.
The lady did mention our GP, but we haven't seen him for ages so how would he be able to comment on her difficulties? He should however get copies of most of her reports from all the other proffessionals involved.
I did even consider, trying to book an appointment to discuss how she is doing as a whole, but don't know whether or not this is wasting his time. She is not due to see her peadiatrican until September.
There are just so many proffessional involved- If I send in a copy of the excel spreadsheet, I could be waiting for ever for them all to reply.
I would put GP as they should be able to confirm everything and have copies of letters, reports etc.
The GP receives a fee for completing the form. Maybe make an appointment to see him even if only to explain you are considering applying for a car badge otherwise the form could be held up waiting for the gp to reply and he maybe waiting to see your daughter. I always tell people to allow 4-6 weeks anyway.
Thanks, I'll ring our GP tomorrow and have a word.
I just felt like I couldn't go on struggling like I have been, getting her in and out of the car can be an absolute nightmare. When she is wearing her AFOs she eases herself out of the car seat, but then gets wedged in the footwell. I suppose wearing shoes 2 sizes bigger than your little feet doesn't really help!
Saffy, that is very useful info that the GP gets a fee, like doing a passport thing? So that is the person someone should put. Thanks.
I just put GP I think
ps we got our in Staffs not Kent and it was soooooooooooooooo easy
Got form through this morn!!! only had a quick look but it doesn't apply much to a 3 yr old does it!!
Also rang doctors, receptionist very nice, but wasn't really sure. I am trying to ring back late when he is in the surgery.
Dingle - different area, but as well as putting down our GP I sent in a recent paed report that stated dd was not standing/walking as, like you, our GP hardly knows dd. We got our badge no problem and I am sure they didn't contact our GP.
Dropped Amelia off at her SN nursery this morning and went along to the council buildings to drop off my completed Blue Badge Forms.
After scanning in various letters, reports and typing up nearly 2 A4 pages of info on walking outside, her disability, how it effects her, difficulties getting her in and out of cars..etc
The lady I spoke from the Blue Badge dept, said that her learning disability can't be taken into consideration - only take the actual physical disability!
So I don't hold out much hope. WE had a short chat and decided that Amelia's paediatrician would be the best person to contact - now I am trying to chase up what info the paed has received since our last appointment in September. Does she even know that Amelia is wearing AFOs now and has a major buggy!!?
The lue badge lady seemed more optimistic about us getting back to them when we have the results of the DLA claim- and I am stil only half way through that!
Why is everything such a fight!!
Sounds wrong to me Dingle - her learning disability affects her physical ability and therefore should be considered. Also, that would mean that children with ASD couldn't get them (if not physically disabled as well) and they can.
I think the problem is often that the people administering them don't even know the rules themselves and many sadly don't seem to have the capacity to reason beyond a list of tick-boxes. I was told initially that dd could categorically not get a blue badge until she was 3. Well, she got one when she was 2 so that was bolloks.
Hope you get it sorted soon. I have to tackle dd's DLA forms today .
There is definitely provision for people with learning disability to get a blue badge, I've posted it before, cut and pasted from a DWP booklet. Can't find it now, maybe switch to alpha and look under "D". I'll try to find it later. HITC is right, most of them don't know the rules.
Dingle - I've just posted a reminder for you to CAT me on the Fine Motor Skills thread so that I can send you the worksheets.
Just thinking as well, dd qualifies for both Care and Mobility components of DLA and I still have copies of her application forms, I could send those on to you at the same time, if it would help. Just to give you an idea of the kind of things we put down (successfully, thank god!). Dds Williams Syndrome means that at this stage her fine/gross motor skill problems and learning difficulties are very comparable to children of the same age range with DS.
Thanks ladies. I will try to hunt that out Davros, do you know if the info is online? I wonder if her age is still going against her!!
MandM, I repied on the "fine motor skills" thread. Thank you. Please don't put yourself out but if you could get those copied, it would be great. We are off on our hols for a week at the end of the week and I was really hoping to have it all done and dusted and in the post beforehand, but that just isn't going to happen! So there is no huge rush for them!
You lot are wonderful, it would be just so easy to just give up and not fight, but that is not going to happen.
How old is she? Once she's 3 she can get higher rate DLA then she can get a blue badge- the council don't have a choice! That's the route we took - although the dla 'helpline' told me that he couldn't get higher rate unless he was physcially impaired (bollocks!) I quoted a test case in the application form and was awarded higher rate mobility on first application.
onlyjoking is a whizz with the mobility component for dla.
In the DLA applicaiton I made the point that he couldn't walk anywhere unaided (he can't - let him go for a second and he's streaming off into the middle of the road). Also said his dyspraxia made his movements a bit ropey but concentrated on the supervision he requires (adult hand/harness at all times).
her learning disability can be taken into account if it means she has no sense of road safety or traffic awareness, for example.
agree with jimjams. They need constant supervision, how on earth can they say learning disability doesnt count? i really wish they would give these people proper training
Here is the info I included with the Blue badge application for what it's worth. I was going to use this as an attachment to the DLA form but now I may need to stress more "pyhsical problems!"
Additional Information- re; Amelia Loft.
In addition to her learning disability, Downs Syndrome, Amelia has no understanding of danger and reduced communication. She also has sensory issues that no professional has really addressed with me. Any loud noises, wind rain, a dog on the other side of the street or a friend walking in the opposite direct. This is all too much for Amelia to take in. She will just freeze, cry, hold her ears, cling to my leg and refuse to walk. Constant encouragement is needed.
Amelia has very loose, flexible joints and walks with a wide gait and hyper-extended knees. This stiff-legged manner of walking affects her balance and co-ordination and obviously the speed and distance she is able to walk. She also tends to walk with her head down, perhaps due to sensory issues (?) so she obviously needs additional support to see where she is going and avoid bumping into things.
Amelia now wears ankle-foot-orthotics (AFOs) daily for half the day. In addition to this, we have now been assessed and have a major-buggy. This now gives me more chance to be selective about when/where she builds up her stamina/endurance.
Amelia has behavioural issues and often just simply refuses to walk and sits herself down in the middle of the road/pavement. With such reduce communication, I find it difficult to discipline this and spend 5-15 minutes trying to encourage her to walk again. This can happen several times in one short journey.
Amelia is above average in both height and weight on the normal growth charts and is off the Downs Syndrome height chart completely for a girl of her age. She is just over 100cm and the average 5 yr old girl with DS is 97cm. I simply cannot carry Amelia for any distance and I feel by doing so I am giving her the wrong idea of what she should be doing.
Amelia has no understanding of danger, cars, falling, or strangers. Will pick up litter off the floor, has even attempted to pick up dog foul(!!!) No understanding of boundaries, will try to pull me over into peoples gardens or into the road and as we walk I am continuously pulling her in the right direction.
She tries to grab at passers by, hold their hands etc. She will stop and say hello to almost everyone who passes by. The most worrying thing about this is that Amelia has shown a distinct preference to men, and will quite happily approach strangers. Trying to teach her the danger of this would be way above her level of understanding.
I have to hold her hand CONSTANTLY, let go for a second and she would try to get away, I often have to lift her in shops, ticket machines etc to manage.
Amelia will walk passed parked cars in the street and try to open the doors.
Getting Amelia in and out of cars in a major problem. She often almost reduces me to tears, as I struggle to get her into the car, sit her in the car seat and the belt on. I usually have to get right into the back of the car with her when she is making a fuss, it is the only way I have found that I can restrain her long enough to get her belt on and tightened sufficiently to be safe.
When Amelia is being co-operative, she still needs to be physically lifted in and out of the car. I have tried to give her the extra independence and let her get out of the car seat herself, but especially when she is wearing her AFOs (and shoes 3 sizes bigger than her feet) she has difficulty manoeuvring in the restricted space of the back of a car. To aid these problems as best as I can, I push the front passengers seat as far forward as possible, but I can only do that if I dont have a front passenger.
I really feel this is one of our major issues and to find parking spaces where I can open up the door wide enough to get Amelia in/out the car safely and into her major buggy is just a nightmare. So much so, that now I just hate taking her out anywhere, and that is no way for us to live our lives and no way for Amelia to learn, develop daily living skills or interact socially.
Bum! It applies to people over 3, but here is the info anyway from a leaflet to do with DLA that is printed by Social Security and The Benefits Agency, it is leaflet no DS706. To quote:
A child aged 3 or over may be able to get help with getting around if they:
- are severely mentally impaired with severe behavioural problems and qualify for the highest rate care component
(the empty dashes are other points relating to physical disability I cant be bothered to type out)
A Child aged 5 or over may be able to get help with getting around if they:
- can walk but need someone with them when they are walking outdoors
(the blank dashes are not relevant and couldn't be bothered to type it all out).
She is 3.7 davros.The info seems very similar to that given on the DSA site. I'll def look into this if it all tumbles down around my feet! I won't give up.
right blue badge forms my fav we have three of them so am quite used to doing them, now i dunno if the blue badge forms are standard, but in nottingham they list requirments with tick boxes, firstly it says something about getting top rate mobility, this puts lots of people off if you read down a bit it says either middle or high rate care, so you dont HAVE the get top mobility at all, but if you do get top mobility then you will get one no probs, make sure and use words like, the child needs restraint (holding hands, reins its all restraint)child has learning disabilities and behavior problems, i know it sounds grim and too much like the DLA forms but its a means to an end, plus if you have blue badge you get wide space free parking and if you take your badge to the local council office you can get a free RADAR key which are well worth having.
Thanks onlyjoking!The form sounded very similar to the one I have just given in. Oh well too late to do anything about this one now- will just have to wait and see.
I am completing DLA as well ATM dd's care component runs out in October when she is 4. I am also trying for mobility as we never applied for that before, but now she is wearinf the AFOs and has got her major buggy sorted I thought it would be worth trying at least.
So wanted to get all this in the post before we go on holiday, but it seems I will have it hanging over me for a while yet!
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