To give up fight for ASD son?

[DovahJunFeyn]

Been having a real rough time of it with my DS is 4 coming 5 and the fight with DLA for mobility. DS receives HRC, he has severe autism, sensory processing disorders, PICA and hypo mobility.

Taking him out in public has always been hard with the constant wakings at night, preparations and the thought of what's to come but it is has become unbearable now. He is in a special needs buggy as he has no danger awareness, will run into on coming traffic, scream or lash out at strangers and his refusal episodes cause so much harm when he tries to walk etc Public transport is always chaotic, buses terrify him and being surrounded by so many strangers in such a tight space will always result in a melt down. His melt downs are more violent now towards himself, me and others. He's managed to boot a poor stranger in the face who was trying to help, give me a black eye in the past and has taken chunks out of his arms.

We decided to apply for mobility. We received our rejection letter on the grounds that apparently our OT report stated my son was able to walk out doors but made no reference to refusal to walk or restricted mobility and that the over all picture is that my son walks 'okay'. Their words. We applied under the mental impairment sector for mobility and our GP report was not taken into account of this as they did not read it until after sending this report out. Our OT also stated that she didn't think the DLA form was appropriate for my son's age so she couldn't fill it in correctly. To me they have only picked out certain parts in order to refuse us as we had our Pediatrician report and educational psychology backing us.

I don't know what to do. I feel like shit as it is and I'm getting a hard time about applying for mobility for DS in the first place. Should I appeal? I'm terrified of a tribunal and I don't know what other resources or reports to use. I feel so hopeless now.

Have you read the guidance from Benefits & Work? Or to the assessors themselves? Dss is certainly way less affected than your son but had received low rate mobility from age 5, with no reports from anyone except the ASD diagnosis.

It's all in what you tell them and comparing them to typical children of the same age, so age 5 once they are at school and typical children stop running off etc thanks to teachers, a claim is easier. Anecdotes of what happens if you try (normal parenting) can really help, and emphasising that he cannot walk from A to B 'safely or reliably'. How many times has he ended up staging a sit-in? How long does he scream for how often? It's horribly depressing but they need to know.
Happy to read a draft if you want (have done 4 PIP and 2 DLA claims so far, 5 successful and 1 pending)

My son has been receiving HRM from when he was 5. Initially he was awarded LRM, and the reason given was that any 5 yr old would need supervision when out - so I asked for a reconsideration, and asked a couple of friends with neurotypical 5 year olds to write a description of a typical day out for them. Contrasted their accounts with mine! Luckily did the trick, really brought it home in a tangible way how different our lives were.

We received HRM again at renewal last year - this time we were applying under the SMI criteria and again were successful. We had a report from an EP, an OT report and a letter from school - nothing from any other professionals.

I would definitely try again once your son turns 5.

I can agree that it's hugely hugely stressful tho. The renews dominated my life for at least 6 months. Really not how it should be.

We got lrm from 5 and hrm from 10. With lrm we used a letter from his school stating his level of learning difficulties and difficulties with his behaviour in school. We also explained all the difficulties we encountered trying to get him to walk anywhere, what we had to do to try to overcome these difficulties and how it compared to a typical child of that age.
When applying for hrm we used the decision makers guidance and made it absolutely clear how he fitted each criteria. We gave lots of examples where he had needed restraining including when with other people and included incident sheets from his school.

I agree, Lonny. I just feel really grabby (sorry!) when I'm trying to explain to health professionals that they need to write about these points and these points only because of they don't then the DLA will pick it apart. I feel like they'll think I'm trying to get them to embellish. I know I'm not but I can't help but feel that's what they think of you push too much.

DJ, any tips on what I should say to my local law center? Never been through the process with one so I'm unsure!

Lakie, this was my issue when applying though. I described each thing and whoever made the choice decided that because our one OT report didn't mention his refusal episodes or refusal to walk that he wasn't entitled to anything. Our OT says she's too busy to write out a different report to combat these comments which is why it feels like like we're stuck because they don't care about my option just the one bit of information that allowed them to refuse.

Ah Qui, you've described exactly how I feel in this situation ! It makes me feel like a liar or a drama queen. It's so fecking hard because we need this. We need some sort of help with mobility.

Would anyone have any links to these guides or case laws? I have t read the guide but I'm familiar with the criteria we have applied under.

Waiting isn't becoming an option because we can't use public transport anymore. It's taxi or nothing because DS can't cope with buses anymore. He can barely cope being outside as it is. It hurts and is stressful when he melts down and gets violent but I'm more worried about him as he bites himself, pulls his hair, scratches eyes. I can't wait and keep putting him through it but I also can not go out.

My issue is yes age is a prime factor but a NT 4 year old doesn't react the way my child does. Doesn't hurt themselves the way he does, doesn't react the same way. But because our OT report didn't parrot exactly what we said that's where the rejection has comes from. I'm between a rock and a hard place.

I have an 8 year old with dyspraxia and we get hrm. I used the cerebra dla guide and used the appendix about applying for children with neurological conditions and using the argument that my son is "virtually unable to walk" due to his frequent refusals and lack of safety awareness, impulse control, likelihood of him injuring himself or melting down. The guide is very clear and easy to use.

w3.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/ Download the guide here

Look at page 49 in particular

We did have to ask our son's physio to fill out the accompanying statement to concur with us. Even though my son is able to walk, she was happy to concur.

We went through the form with her and read everything out that we'd written, explained how it effected his life and explained what a difference being able to afford taxis and having a blue badge would make. She totally agreed and modelled her statement on our answers . But yes it was a nerve wracking emotional conversation. Just remember that you need to fill out the form thinking about what it is like on the WORST day.

Hi OP. Try Autism Initiatives to help you appeal or point you in the right direction. Ring the head office in Belfast, not the local support group in your area.