Can you help?

[BuntyB]

Hi,

I am doing a research assignmnet for Uni and thought I would pick a topic close to my heart!

 

Please feel free to comment on your experience of finding out/ claiming DLA and how you feel your income has been affected or not as applicable.

 

Thanks for all your help!

 

Shona xx

[BusyLizzie100]

I claimed for DS2 before he had dx, when we just had confirms over his development, and when it was awarded it was, for me, a huge signpost that my worries about him were justified and we went on further to get a dx.

 

We applied for DS1 a year later, although probably should have done him at the same time, but I didn't think we'd get it for him - we did!

 

We were successful first time for both, largely because someone from the county council's Money Advice Unit came to our home to ask the questions and fill in the form for us. She was brilliant, and knew exactly what to say.It was a really cathartic experience. She came again to do the same for DS2's reapplication and thought he would drop form high mobility to the low rate, but we were successful again. Reading many of the posts on here, we realise how lucky we have been, but it is totally down to the fantastic help we got.

 

Oh, and by the way, the money is absolutely vital and we couldn't manage without it.

 

Lizzie x

[Kathryn]

I found about DLA from this forum - I would not have known about it otherwise. I suppose we were very lucky indeed, when I claimed, L had only had a dx for a few months and there was no history of obvious disability.

 

At the time of struggling through the 30 page form, I was also battling with the LEA for a stautory assessment and dealing with L's mental health problems. So it wasn't a good time. We were also very short of money, and I couldn't work. So when we got the award in January two years ago,, it couldn't have come at a better time.

 

It has eased a lot of stress. We live on a very tight budget and if L needs anything to help her communication or mobility it's comforting to know the money will be there. The computer, for example, is vital to her social life and it's good to know that if anything goes wrong with it, we have the money to fix it or get it replaced.

Edited November 22, 2006 by Kathryn

[madmooch]

The process of claiming DLA is hard - i felt i had to fight to get the right award for my son - it could be made easier than having to repeat answers all through the booklet - i had to appeal against the desision, luckily it didn't have to go to tribuneral.

 

I dread having to do it every 3 yrs.

Clare

[chriss]

I was supposed to go back to work part-time after my son was born but when it came to it there was no way I could. I was getting 3 hours of broken sleep a night and he screamed a lot of the time and especially if I wasn't in the room. My family had offered to help out whilst I was at work but none of them could cope with him. I couldn't put him in nursery either as he would get hysterical the moment we walked through the door. They said could I wait till he had settled more. Also, he would never drink from a bottle despite every effort on my part (because I was desperate for a break from him) and I ended up breastfeeding him till he was 2.

 

I split from my partner. My sons activities were a catalyst rather than a cause. I ended up living in a rented house on income support. This was never a situation I thought I would ever end up in but there seemed to be no way out. My savings disappeared fast and I struggled. I got very overdrawn. I lost contact with friends because I was embarrassed about my situation. When he was three he started sessions at a nursery and seemed to cope but his nursery nurse started to suggest that something was wrong. I didn't want to hear it and applied for some jobs but the nursery actually said you can't leave him here any longer than the couple of hours he already does as he won't cope. So I still couldn't work. I got no help from his dad and only a little help from friends or family who found him hard to manage.

 

He was finally diagnosed when he was 5 with Asperger s Syndrome which explained everything. By then I had spent 5 years on the breadline. Don't get me wrong I am very grateful to the country for supporting me but I was desperately bored and lonely and I used to love my job. I wanted to go back to work so badly it hurt. There was also the fact that I spent my days dealing with meltdowns and never got a night out or a good nights sleep.

 

I was keen to get him out of nappies as they are so expensive but he was 4 and a half before this happened.

 

DLA made such a difference to us. I felt like a normal person again just because I had a little spare cash. I felt less stressed and that made me better able to cope with my child. The process of claiming it was slow and we had a home visit from a Doctor but it was ok in the end. I am still on other benefits but do voluntary work whilst he is at school. He goes to a mainstream school but is very stressed by hometime and wouldn't cope with after school club. Also he is often off sick from school with headaches. So it is still too hard for me to hold down a proper job. If We lost the DLA I don't know how I would cope. I couldn't face going back to the way things were when he was a baby.

Edited November 21, 2006 by chriss

[Bagpuss]

We found out about DLA quite by accident. Our youngest dd was dx with muscular dystrophy before the ASD dx and we went and met with a lady who has MD and runs a local support group. She mentioned DLA, assuming we had already claimed. We were completely unaware of it. We claimed, although found the forms long and draining. Emotionally I found it tough to dwell on what our dd had difficulty with, rather than what she was able to do. We had a doctor come to visit the house, which amazed me, due to our dd's dx. The doctor turned out to be wonderful, and gave us lots of valuable advice. Our dd was awarded DLA, although the whole procedure took months. I was dreading renewing it, as she was initially awarded it for 2 years. When I did renew it, I photocopied everything, enclosed every single report I could lay my hands on, including a copy of her statement. They still contacted the school for further reports..... Our dd was awarded it again, till her 8th birthday, which was just under 3 years away. The money has been invaluable, and I also claimed Carers Allowance, although put if off for a long while feeling it would be a long drawn out process again and I couldn't get my head around being a "carer". It was really straight forward though, and totally different experience to the DLA claim procedure.

[dooday24]

i had already claimed dla for reece when he was younger because he had severe sleep apnea but this time i had to appeal it i think the forms are very repetitive and they want to know in mins on everything i put 24/7 on all of it cos reeces behaviour from 1 min to the next and i dred claiming reeces again in2008

[Karen A]

Hi I have had a form awaiting completion to claim DLA since last Sept.It is such a laborious task and I am aware that even after all the work we may not get accepted.Hence the form is still sitting around.Karen.

[dolly]

I found out about DLA through a support group non of the professionals had ever mentioned it . I would love to go back to work but it has been impossible to find suitable childcare . When i was having a really rough time last summer hols , SS found me a wonderful childminder how was very experienced (there words not mine). She met ds for 40mins then rang SS and said she wouldn't beable to cope

[Lynden]

I wasn't sure what to put for income - it hasn't affected my hubbies income at all, but had Logan been NT then i probably would have gone back to work part time by now, but as it is I can't really so I guess it sort of does, but any income I make doesn't really go towards living, more luxuries iyswim.

 

Lynne x

[mand]

Hi this is my first reply since registering.I have two boys 19 (NT)and 16.

 

I have worked partime all my son's life he is 16 with AS in mainstream (diagnosed at 12 but signs from 3)but have had to stick with working nights as I have had to stay available to support my son during the day for when called by school,excluded ,meltdowns or refusal to go to school.We have paid for assessments that were needed for educational purposes not that they were always taken note of despite the code of practice and DDA and my son has a severe food allergy that restricts food types and cheaper brands.

Having a disability in the family affects the whole family and that is what NT people find so hard to appreciate.

 

Hope this info helps with your research.Let us know how you get on.

Mand

[JsMum]

I think DLA does make a big difference and helps towards equiptment and putting in place a supportive enviroment that can help support the child and that then then has a knock on effect for the rest of the family, I think that the forms are not designed for mental health issues and really do need to have a different set up for the kinds of developmental disorders that are linked with Autism.

 

I did have to attend a tribunal when J first applied but after the consultation they was appauled at the level of support we recieved, he had no formal diagnosis but they saw from the reports from various professionals that J had more needs than a child his own age and they granted us the award as long as went and fought for his statement for school, that was when he was 6yrs old, they awarded it there and then for three years and then when it came to renewal I had lots of evidence including his new statement of SEN and more reports and a diagnosis, and was awarded it again with no tribunal with a further three years.

 

I also did it on the Direct gov website where I filled in the form on the computer and it was pdf which was better for understanding it as my hand writing can be a bit untidy after relentless descriptions, but this made it a lot easier and I was able to save it and do it stage by stage, so over a period of around a week as these forms should never be rushed, the computer is also a good way to have a copy of it for further claims and renewals.

 

I also got a lot of support from Contact a Family, National Autistic Society and recommend these as they send you out information packs.

 

I did have the welfare rights ensure we where getting everything we where entitled to because for a few years I wasnt aware of the carers allowance and was directed to this benefit from these, but this allowance is not really advertised and when it was renewed it was a further 6 months before we got to know about it and applied and was granted this allowance on top of the DLA.

 

I think there needs to be more awareness of DLA and Carers Allowances as well as other grants that help the child like family fund, and holiday grants.

 

I attend an ASD parents group and any new families that arrive the first things we give is leaflets on DLA and Carers.

 

We also now have a carers group and they have displays that explain the benefits available, especially the Carers and you cant get Carers unless you are getting DLA but DLA dont notify the carers if you are claiming the DLA, its madness.

 

DLA does support the child and essential part of their treatment as it has paid for activities, support workers, carers, sitters, and therapy interventions that use at home such as art, crafts, music, and a place for himself a cabin in the garden that is for him when the world gets too over whelming and dietry needs due to food sensory issues.

 

As long as who is claiming it is spending on the child and putting it into supportive measure then it is essentail.

 

JsMum

[wishingwell]

JsMum,

 

I totally agree with everything you've said, when I've spoken to the management in the DLA in the past, they are amazed at how little therapy intervention is supplied by the health service to help these kids. This money is essential to improve their standard of life. Without it I couldn't provide the things that have made a real difference to-wards improving his quality of life. Speech + Drama, Swimming, Karate, Music, Arts + Crafts, Tutors, Days Out, Special Foods, Colored Lenses all this help has been paid for out of his DLA. I have found that unless money is changing hands people do not have the time to work with my son.

 

But it is very difficult to get DLA + Careers Allowance. I've never heard of the Family Fund or the Holiday Grants.

Can anyone explain these?

[wilson]

Hello,

 

 

We applied for and started receiving DLA this year. Prior to this, we were totally unaware that the allowance existed or that you could apply for 'hidden disabilities'. In fact, I only found out about DLA through a friend at work.

 

The allowance has made a great difference. My husband is self employed and (out of term time) the primary carer for our two little boys. The allowance means we can afford a lot more out of school care.

 

Why are people not told upon diagnosis that they may be able to claim DLA?

 

 

Janet

[mandyque]

JsMum,

 

I totally agree with everything you've said, when I've spoken to the management in the DLA in the past, they are amazed at how little therapy intervention is supplied by the health service to help these kids. This money is essential to improve their standard of life. Without it I couldn't provide the things that have made a real difference to-wards improving his quality of life. Speech + Drama, Swimming, Karate, Music, Arts + Crafts, Tutors, Days Out, Special Foods, Colored Lenses all this help has been paid for out of his DLA. I have found that unless money is changing hands people do not have the time to work with my son.

 

But it is very difficult to get DLA + Careers Allowance. I've never heard of the Family Fund or the Holiday Grants.

Can anyone explain these?

 

There is a pinned thread in the Help and Advice section all about Family Fund, they are fantastic, you can claim once a year for all kinds of things.

[Shnoing]

I voted "yes", we're claiming DLA but obviously it's got a different name in continental EU.

[Wicce]

I was told about DLA by the children and family centre that my son used to attend. They also told me about Carers Allowance, but I had to be talked in to applying for either. I was already on income support and felt dreadful about claiming yet more money - despite the fact that I had no food left for myself at the end of each week, and couldn't afford to take the bus anywhere!

 

The C&F centre pointed out (repeatedly!) that I had every right to claim these benefits, and how good it would be to be able to just jump in a taxi and go home when the kiddo was having a Bad Day. Eventually I decided they were right and applied. The forms were a nightmare and the decision took months to come back, but when it did, we'd got it and it was backdated too (I just about fainted when I saw the giro).

 

We had to reapply for it last year - they sent the form at the begining of the summer holidays, so between nursery finishing and school begining, which made it even more difficult to fill in. Again it took several months for the desicion to come back to us, but when it did they'd increased it and we don't have to reapply unitl my son is 12.

[lynyona]

I actually got DLA for kieran before he was dx as he was statemented with learning disabillities.The only beef i had with them was he was up for review the year after he left school.I got middle care and low mobility while he was at school and lo and behold when he left school and was at home all day and everyday they said he didnt need as much care as he used to.How did they work that one out he was at home all the time.I did appeal and i got it reinstated back to middle care and low mobility.I also got carers allowance but i went to work part time when he was 18 and when my hours went up and i wasnt entitled to carers allowance my youngest had just left school and it was down to him to be with kieran when me an dh were at work so i got him put down as his carer and he gets carers allowance for him now.If he d have been younger i wouldnt have felt able to go out to work so finances may have been a bit tighter but at the end of the day everythings always tight financially.

 

 

lynn