claiming DLA but no doctor's reports

jackieb

I'm considering applying for DLA for my daughter who has just turned 16. I've considered it before but my husband didn't want to claim for any benefits and he said he just wanted her to be better. But the situation has dragged on forever now. I do work but only relief as I can't do much hours as I have a lot to do with her. The thing is that even though she has a few problems we don't see any specialists or doctors - well not a lot anyway. I have no reports or anything that I could send in with a claim. My daughter had been seeing a psychologist for a couple of years and it was her who suggested testing her for Aspergers - and after a long series of tests my daughter was diagnosed with Aspergers (3 months ago since dx). My daughter has been discharged from the psychologist now (and she's on maternity leave - she said she'd send me a report but hasn't, and now she's off work) as she said she deals with young people with mental health problems (like anorexia, etc) and my daughter doesn't have them.

My daughter also has something called encoprisis, which is soiling caused by constipation. She's had this since she was a toddler. We have seen doctors about this but nothing very pro-active i'm afraid. Last appointment for that was in October 2011. She also wets the bed about 5 nights out of 7 on average. I have loads of washing. She has 3 duvets on rotation and they're usually all washed in the same week - as well as the other bedding and clothing, even though she wears pull-ups to sleep in (which are also expensive). We've tried without but it's far too messy. It's even messy with them. I have an expensive heavy duty mattress cover which the whole mattress zips into, but even that has been eaten away and her mattress now needs replacing.

She was born with an encephalocele (a bit like spina bifida but the opening is in the skull and the protruding sac contains some brain tissue), had this repaired and developed hydrocephalaus and she has a shunt in for this. It's been replaced twice - last time in 2007. This doesn't really affect her that much, but it has caused some motor difficulties - she can't tie shoelaces or hold a knife and fork properly. She also has some problems with co-ordination. When she was born we were told that the part of the brain which was affected might cause her some motor problems. She was admitted to hospital in March last year as she had a headache which had lasted for a couple of days - turned out just to be a migraine though. So the doctor is mindful that she has a shunt in.

She won't go out of the house unless I drag her out. Over Christmas she didn't go out of the door for 3 weeks! I take her to school, collect her at lunchtime, take her back and pick her up after school again. When I pick her up she won't budge from the lampost she stands next to! I've tried parking down a bit so she has to walk a bit but she just won't move. I've been given permission to drive into the school grounds to pick her up - the school suggested it as she was getting upset having to go out the other way.

I don't know if i'd stand a chance though as when I read about people claiming DLA, a lot of them have reports from doctors, and we don't. The psychologist said we've managed to cope very well on our own. Don't know if this'll scupper any chance of getting DLA though. Maybe I should've complained more but we've always just got on with it. But it is expensive, and the money would help out, especially taking her out. She loves the cinema and that's about the only time she's willing to leave the house - but it's so far away it costs about £50 each time we go! She's also soon to start a self-help group for girls with Aspergers, and that's a 90 mile round trip, every week.

kerryallc71

hi , have you ever heard of contact a family .... here is there link .

http://www.cafamily.org.uk/

here is there phone number its a free phone number , 0808 808 3555 .. i have found these very helpful in the past , they can get you in contact with local help near you and they have excellent advice on disability benefits for parents with disabled children .

also http://www.carersuk.org/ and http://www.carers.org/?gclid=CO7A-Zm84K0CFUoifAodeh099Q ( is there a local princess royal trust carers place near you - they are very helpful and they have helped me loads in the past )

it sounds like your daughter would be able to claim DLA because she requires more help and support than a child of the same age .

also national autistic society have a parent to parent line and they are also excellent at giving help and advice that is free phone as well , the NAS also have a forum that can offer great advice . here is a link to them .

the NAS forum - http://community.autism.org.uk/discussions

the NAS parent to parent line - http://www.autism.org.uk/Our-services/Advice-and-information-services/Parent-to-Parent-Service.aspx

here is another to the right of this page is a find local help in your area - just type in your postcode and it should show what help is available in your area - http://www.autism.org.uk/living-with-autism/parents-relatives-and-carers.aspx

goodluck with everything , i have a 16 year old son Thomas who has autism and my daughter zoey may have mild autism we are going through things like tests at the moment with her to hopefully get a diagnosis she is almost 8 yrs old . and my son Edward maybe dyslexic .

goodluck with everything and hope you can get the help you need , someone may be along later to help a bit more than me .

see you from Kerry .

jackieb

Thank you Kerry. x I have just recently got in contact with NAS for the first time - that's who the group she'll be going to is set up through. After my daughter was diagnosed with Aspergers all I got was some leaflets. I felt like we we'd been cast adrift and were sailing in the wind a bit!

Peanuckle

Bear in mind that as she's over 16 then she'll have to claim in her own right, this means that although you can fill the forms in she has to sign them unless you think she's not capable of handling her own affairs, in this case you'd have to apply to handle them for her. The DLA forms for an adult are different so make sure you ask for the adult forms when you ring but there is no reason you can't apply, any award is given on care/mobility needs not on diagnosis but it's highly likely that she'll be required to have a medical to confirm what help she needs as you have no reports to send. Before applying I would suggest talking to her GP about applying as the DLA team will most probably ask the GP for a report anyway so it'd help to make sure they're up to date with what care needs she has.

jackieb

Peanuckle wrote: »

Bear in mind that as she's over 16 then she'll have to claim in her own right, this means that although you can fill the forms in she has to sign them unless you think she's not capable of handling her own affairs, in this case you'd have to apply to handle them for her. The DLA forms for an adult are different so make sure you ask for the adult forms when you ring but there is no reason you can't apply, any award is given on care/mobility needs not on diagnosis but it's highly likely that she'll be required to have a medical to confirm what help she needs as you have no reports to send. Before applying I would suggest talking to her GP about applying as the DLA team will most probably ask the GP for a report anyway so it'd help to make sure they're up to date with what care needs she has.

I have the forms already. I picked them up last week. A medical shouldn't be a problem - she just won't talk to them, she'll not look at them and ignore them! The problem is our GP is retiring at the end of the month and we haven't been allocated another one yet.

Oldernotwiser

jackieb wrote: »

I have the forms already. I picked them up last week. A medical shouldn't be a problem - she just won't talk to them, she'll not look at them and ignore them! The problem is our GP is retiring at the end of the month and we haven't been allocated another one yet.

Hopefully your new doctor will be more pro active to get your daughter the help that she needs.

Peanuckle

jackieb wrote: »

I have the forms already. I picked them up last week. A medical shouldn't be a problem - she just won't talk to them, she'll not look at them and ignore them! The problem is our GP is retiring at the end of the month and we haven't been allocated another one yet.

Still go and update the GP and be sure to ask that he makes an entry on her notes of any care needs, the new GP will then be able to catch up quickly with her case. Once you have a new GP be sure to go in for an appointment to make your daughter known to them and, if I was in your position, I'd ask for referrals to anyone they think could help. In my opinion, the bowel problems should have been referred to a specialist for example and, as far as I'm aware, there is help available from the incontinence service supplying pullups free of charge.

Best of luck and I hope the new GP can offer some hope in getting more support for you all. (you're also entitled to a carer's review I think but I'm unsure how to go about that?)

jackieb

I would need to fill in the forms but I don't have a problem with her signing them.

jackieb

Peanuckle wrote: »

Still go and update the GP and be sure to ask that he makes an entry on her notes of any care needs, the new GP will then be able to catch up quickly with her case. Once you have a new GP be sure to go in for an appointment to make your daughter known to them and, if I was in your position, I'd ask for referrals to anyone they think could help. In my opinion, the bowel problems should have been referred to a specialist for example and, as far as I'm aware, there is help available from the incontinence service supplying pullups free of charge.

Best of luck and I hope the new GP can offer some hope in getting more support for you all. (you're also entitled to a carer's review I think but I'm unsure how to go about that?)

She saw a specialist in October last year. I just wanted to ask his advise on giving her a clearout but didn't want to go ahead without medical say so.

No-one has ever mentioned anything about an incontinence service to me. It does feel as we've been left to cope on our own a bit. Every appointment we've had i've had to ask for. I asked her to be referred to someone as I thought she had selective mutism and that's how we ended up seeing the psychologist, and my daughter being diagnosed with Aspergers.

pmlindyloo

As someone has already said as soon as your old doctor retires make an appointment to see the new doctor. I would be inclined to ask for a double appointment.

If you apply for DLA (and from what you've said I think you should) then you will definitely need your doctor's support.

Also, from what you've said you have not had much help. There is help available and your doctor should be making sure that you have access to it.

Don't forget to ask your doctor for copies of any reports from anyone (psychologists etc)that your daughter had seen - they should have them.

Personally I would be asking for referrals to specialists etc again so that you have recent and up to date information about all your daughter's difficulties to use in your application for DLA.

Once you have all the paperwork needed then you could use CAB to help you complete the form for DLA on your daughter's behalf. You will need to see a welfare and benefits specialist so choose a bureau that has one of these.

GlasweJen

Is your daughter still at school? A letter outlining problems at school would be a start.