KezT Report post Posted November 24, 2011 I know this isn't directly ASD related, but many ASD children must need nappies so I'm looking for some advice.... My daughter is not ASD but does have continence problems. She is under a consultant and the continence clinic. She curently soils herself several times a day, every day, and has done for well over a year, with no end in sight:( We put her back into nappies about a year ago because she was getting so many infections. We buy these ourselves, but its costing a fortune and I really can't afford it. It has got beyond the point of "nappies or milk".... A friend with a severely autistic son said she gets all of his nappies prescribed, but when I went to my GP, she just said "we don't prescribe nappies, ever". She sugested that is what DLA is for, but we don't get DLA for her! So does anyone know if I can get nappies prescribed and who by? Thanks Quote Share this post Link to post Share on other sites
Lynden Report post Posted November 24, 2011 They're not prescribed as such but you do get them through continence services if your child is over 5 and has toileting issues. Your consultant at the continence clinic should be able to refer you. L is still in nappies at 8.5 and we get 4 per day in our area. I still need to buy as we don't get nearly enough, but it's a help. We order from tena direct. Lynne x Quote Share this post Link to post Share on other sites
dekra Report post Posted November 24, 2011 (edited) Hi Kez, have you considered applying for DLA? With frequent issues with toiletting needs which is such personal care and so often maybe you'd qualify? Worth a shot, nothing ventured nothing gained after all. I applied for my son during the summer, I was refused initially but after requesting a reconsideration awarded MRC specifically because he has toiletting issue (although to me the toilet problems are a small inconvenience compared to some of his other problems but that was the criteria the assessor used to award it). Edited November 24, 2011 by dekra Quote Share this post Link to post Share on other sites
LisaKaz75 Report post Posted November 24, 2011 My son is 4 however his DLA was awarded because of his incontinence, which they compare against other 4 year olds. I was told regardless of his other issues once he is toilet trained they would need to look at his award again LisaKaz Quote Share this post Link to post Share on other sites
KezT Report post Posted November 24, 2011 we have applied for DLA- it took five months then was refused. Just got a letter saying it will be another 3 months for the reconsideration. I'm not sure if we'll get it as the doc says she should get better eventually - won't give a time frame to us, but if he says thaton the form they'll se it a s a reason not to award..... But eventually is an awful lot of nappies at £8 per pack.... Quote Share this post Link to post Share on other sites
Special_talent123 Report post Posted November 24, 2011 I used to keep wetting the bed and that were when I were 12/13 years when i remember. I had tablets for controlling it but when paeditrician asked if had trouble with my droppings i said NO when i did who wants to tell a man that. but i run to the toilet all the time lucky its in my room i can get to it quick Quote Share this post Link to post Share on other sites
Lynden Report post Posted November 25, 2011 My son is 4 however his DLA was awarded because of his incontinence, which they compare against other 4 year olds. I was told regardless of his other issues once he is toilet trained they would need to look at his award again LisaKaz Did they say it was because he was incontinent on the letter? It surprises me that they would give DLA to a 4 year old purely because of continence because it's not that unusual for a 4 year old to have some issues which is why most areas don't give free nappies till they are over 4 (5 in some areas). I'm not surprised you have DLA but I'd have put it down to his autism rather than toileting issues at 4. Lynne x Quote Share this post Link to post Share on other sites
LisaKaz75 Report post Posted November 25, 2011 There were other issues too, but the letter stated I must contact them when Leo was toilet trained, as it may affect his reward Quote Share this post Link to post Share on other sites
cmuir Report post Posted November 25, 2011 Hi Could this be a matter for social work? I believe in Scotland they can award family funds or grants, for example, I've heard of a family getting money to buy a trampoline for a child with ADD or a mother being able to spend money on putting herself through her driving test because it would ultimately benefit her disabled child. I could be wrong, but think this could be looked after during the course of a section 23 social work assessment. Best wishes. Caroline. Quote Share this post Link to post Share on other sites
KezT Report post Posted November 25, 2011 Hi Could this be a matter for social work? I believe in Scotland they can award family funds or grants, for example, I've heard of a family getting money to buy a trampoline for a child with ADD or a mother being able to spend money on putting herself through her driving test because it would ultimately benefit her disabled child. I could be wrong, but think this could be looked after during the course of a section 23 social work assessment. Best wishes. Caroline. Hah! I couldn't get a social worker to see us even when I phoned up in tears saying I honestly feared for the life of my son (years ago - long before all the cuts made things even worse!). One did visit when a neighbour reported us for child cruelty (becos son screamed for 20mins straight) - even then it took a month before they turned up - if it had been a real CP issue a month is enough time for another Baby P or Victoria Climbe(sp?) to happen:( That SW agreed we needed some help, and referred us to two organisations who both said they'd put us on the waiting list - that was nearly two years ago now and I'm still waiting. And I've never had any further contact from SW or disabled childrens team. I've even complianed to the Director of SS in the LA to no avail...... Have been told "of the record" that the child neds to be admitted to hospital or arested before there is any chance of geting a SW- bothof which I am trying quite hard to avoid! Quote Share this post Link to post Share on other sites
KezT Report post Posted November 28, 2011 They're not prescribed as such but you do get them through continence services if your child is over 5 and has toileting issues. Your consultant at the continence clinic should be able to refer you. L is still in nappies at 8.5 and we get 4 per day in our area. I still need to buy as we don't get nearly enough, but it's a help. We order from tena direct. Lynne x Finaly got an answer fro ur continence srvice - they said they do not prescribe nappiesfor children unless there are severe developmental or learning problems dx'd! Does that sound like it can possily be legal? Everyone agrees she needs them..... Quote Share this post Link to post Share on other sites
Lynden Report post Posted November 28, 2011 Hmm I dunno then - maybe it's not for children who have continence issues with no other underlying problems. Different areas have different guidelines too but I'd imagine if your continence service is saying no then it's probably right for your area. I'm not sure who else you could check with. What does the consultant your daughter sees say? Lynne Quote Share this post Link to post Share on other sites
