dla dilemma

Savvy_Sue

Had another thought, which I admit is unrelated to the DLA.

You don't say whether your son is statemented, or whether he gets help in school - you mention trying to get more OT through the school, but apart from that all the 'extras' you mention seem to be out of school or privately funded.

If he isn't getting help in school, I think I would be trying to get him help now. It doesn't seem fair for him or for you that he has to bring unfinished work home, in addition to doing homework (although I agree that the priority is getting it finished!) Maybe he has a scribe in school as well as at home, or maybe they've found some other solution. Maybe he's just about coping now, but unless there's some reason to think that things will improve as he gets older then the sooner you start to get appropriate help organised, the better.

And also, wrt the DLA, you may feel you don't 'need' it now. But things may change, and you don't want to wait until you DO need it to apply, if you could be getting it now. Because if something changes suddenly, then there's usually enough stress with whatever the change is, without the hassle of applying for DLA which you now need.

Just my feelings. Hope they make sense ...

bambam_2

I'm not sure if they do 'statemented' in Scotland. I have fought with the school to get help for him for 2 years but because he is exceptionally bright he wasn't falling behind in the national tests (at that time) so they weren't interested. Actually thats not fair - his class teacher was very concerned and tried her best to get him assessed but eventually admitted defeat and told me to go private or nothing would be done.
Enter the pit bull (aka the therapist) who informed them that they were in breach of guidelines and suddenly they want to send him for every test going - but, oh dear there is a terribly long waiting list/shortage of specialists/recources etc. etc. so we still wait. Adn they won't act on his therapists diagnosis because she is not a council employee. (she does however work within another education authority)
Meantime the work comes home with him because there is no-one available to scribe or give him any support.
They have confirmed that there are 'signs' of motor function delay (confirmed by who I have yet to find out) and have embarked on a short term course of exercise to help improve this. I personally think this is just to make it look like they are doing something. And of course while he doing these exercises he is missing class time so gets even further behind with work!

Savvy_Sue

You need IPSEA ... fortunately there's a helpline for Scotland as well as for England and Wales!

I am sure there are guidelines for the time limit on arranging for assessments and then getting appropriate help in place. Even if there aren't, you'll get an idea of whether the way you're being [STRIKE]fobbed off[/STRIKE] treated is reasonable ...

bambam_2

I'd never heard of this. I will definitely give them a call. We have a meeting scheduled in January so I wanted to be well prepared if they fail to propose additional help within the school.

sarah*a

Savvy_Sue wrote:

He may not be able to travel independently, for example, so until he passes his driving test - and you might want to consider whether he will ever make a safe driver! :rotfl: - he might need to take taxis.

I agree with this point totally. I claim DLA - and certainly don't class myself as 'disabled'. My day to day 'normal' life is good I just get flustered when going places by myself and struggle with public transport - so I use the majority of my DLA on taxis to hospital etc. I couldn't afford to do this without DLA - it helps me be more independent and gives me courage to go out on my own.

good luck though with whatever you decide.

bambam_2

I think I will wait and see if the school comes up with the goods. If they don't I will feel justified in claiming in order to provide additional tutoring and therapy for him (even though this does not appear to be a criteria for eligibility).
If his problems persist into adulthood then the decision will rest with him at that point.

Primrose

Does your son need to know if you're receiving benefits for him? If you're concerned about this causing a lack of motivation to work or try harder, why not keep the information to yourself. If, when the time comes that he finds it difficult to get a job, that would be time enough to let him know there might be some financial support available.

pmd

DLA is a benefit which recognises that people with various disabilities have extra expenses in running their lives. People can be receiving DLA while in a high-powered job. It's not means tested. It's quite different from Incapacity Benefit which is a wages-substitute for people who can't work because of sickness or disability.

You're not encouraging your son to go into a benefits-dependency culture, just taking up a benefit which you and I and all other taxpayers are paying for which can help him (and, while he's a child, you) to cope with his particular problems (be it employing someone else as a scribe, more driving lessons in future, whatever time-saving gizmos you need now because you say you are "time poor"). Go for it.

I'm glad you say your therapist has filled in most of the form: it's a sad fact that there's a much better success rate for DLA applications where the applicant has had help from CAB or similar, and it sounds as if she knows what she's doing! Good luck.

scally_2

"You don’t consider yourself to be disabled - Disability Living Allowance is for people with long term health problems which affect their everyday activities"

Read this on a link posted further up the thread.

My daughter was diagnosed with ME when she was 11. I was told to apply for DLA for her. Like yourself I was unsure that this was a route I wanted to go down. I eventually applied. The claim wasn't succesful. She'd been ill for just over a year. I wasn't going to persue it any further. Again, I was pushed to continue. The case went to a tribunal, and my daughter was awarded DLA for both personal care and mobility.

It's sometimes hard to see where being a mum and caring for a child who needs extra help stops and being a full time carer begins. Like you I thought of myself as her mum first and foremost, and did what any other mum in the circumstances would do. I felt really guilty about claiming any benefits for her. Someone pointed out to me that I'd put my life and career on the back burner, and caring for my daughter had taken over. I didn't realise how much extra time her medical problems was taking up. Even though she had been diagnosed with ME, I tried hard wherever possible to not let her see herself as disabled. Like you I didn't want her to use her health problem as a way of life on benefits, for the rest of her life.

I used the DLA money to encourage her to lead a "normal life" ie swimming lessons, tutor to help with school work she was missing by being at home, and babysitters so I could have some time off. Some of it was also saved so that if in the future she needed extra help, or wanted to go to University she would have some savings to help her out.

Now at 20 she still gets drained and really tired, but she's holding down a full time job. It would have been so easy for her to use her health problems to live on benefits. However, even though she was getting DLA, she was never treated as disabled, and never thought of herself as having a disability.

The money that was saved form her DLA is now being used for her driving lessons.

Chris

Dragonmist

Claim now while you have a professional to back you up in your claim. Your husband has paid for this by his taxes over the years. It is not Charity, it is your son's right.
My grandson is 19, and lived with us since a baby. His SEN was for Dyslexia which doesn't get covered by DLA. However it has been obvious for years that he is mildly Dyspraxic, and is Aspergers. The intelligent ones never get the help they need, they are just expected to cope. I took him out of school at 14 y 9 mnths with a reading age of 8.8 - spelling 7.9. It took me 2 years of intensive home education to teach him to read to his age group. He will never be able to spell, but has learned to use a Spellchecker, and prints everything. I wish they would invent a spellchecker that would differentiate between same sounding words though. e.g. would and wood. witch and which. We have had some very odd things printed at times. We have never had a penny towards his keep since the Child Benefit ran out, not that that paid for his keep. My husband was too proud to claim for him. He didn't want anyone to think he couldn't afford to keep him. He only claimed DLA for himself for the last 3 years because we couldn't afford to run the car without it.
We managed to support him OK as my husband was long term disabled with Leukaemia, Heart Disease and chronic arthritis. We had enough money to cope. Since my husbands death a year ago, my income is half what it had been. The electricity and gas bills are higher. I can't claim him as a dependant as he is 19. The Job Centre say he must work, but he can't travel alone, can't cope with crowds, noise or smells. They offered him work in MacDonalds or Burgerking!!! He isn't safe to let out on a bicycle alone, so I suppose he would have to walk to and from work. About 90 minutes each way if he could cope. At 19 he has to claim DLA for himself. He refuses to see the Doctor to get the assessment form filled in, and the Doctor won't fill the forms without seeing him. I can't exactly twist his arm and frogmarch him down there. That's an hour's walk away, or £5 each way by taxi. We only have 2 buses a day, going in the wrong direction.
Once you have claimed be prepared to go to Appeal, as they seem to turn down many applications, only to have the verdict reversed on appeal. I think they hope you will give up and go away. Once it has been granted it is easier to reclaim without problems. He can still work and claim DLA when he is older. Claiming DLA legitimately does not make you a dole scrounger. Unfortunately there are a lot of dole scroungers claiming DLA. I'm thinking of the recent case of the martial arts trainer who was too disabled to walk far, yet still taught and demonstrated martial arts!