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.

When I applied for my son I stated that I was applying on the grounds of severe mental impairment and evidenced each point of the criteria - I wasn't confident that he would be awarded the full mobility component but it came through!
It's worth appealing if you have the energy, try and get some help, I found the Cerebra guide very helpful. In my experience of DLA forms you have to spell it out in minute detail, assume the person reading the form has no understanding or common sense!

Do you not get at mobility at all? My son has ASD and gets low rate mobility. He has a history of walking out in front of cars to kill himself from the age of six and can have 50 minute screaming meltdowns on the pavement at the age of ten. He is also incredibly accident prone with poor spatial awareness. I second contacting Cerebra. We've had the lower rate mobility since he was 8 when I first applied. Keep on going for it.

We don't get any mobility. I described all of our issues in detail. I suppose I expected them to understand some of the phrases or such, I thought they had some sort of guide when doing these things? But when I received the rejection letter I couldn't believe that this person only looked at one thing that helped them refuse us. Will it be the same if we appeal?

You should get low rate from five my son is also severely autistic and has learning disabilities but he does have some danger awareness I, m told people struggle to get get it before five we got sent the forms automatically just before ds2 fifth birthday.

Get help from CAB or similar and appeal. His needs are significantly different to a NT child of his age. You should get the lower rate ( I'm more familiar with PIP).

A friend who has a son with Downs has recently been successful in achieving higher rate mobility for him as he needs supervision on all aspects of travel. She's got a Motability car which has dramatically improved their lives.

Keep going, it's a horrible long road unfortunately.

OP if you have a local CAB go there. Ours has massive success at winning appeals.

It seems that DLA/PIP automatically reject nearly everyone, regardless of disability. People who can hardly walk get rejected. You're son isn't alone in being rejected, the system is shit and it seems they like to put people off claiming what they desperately need, and are legally entitled to. Don't give up, it's part of the dehumanising process.

You might do better to reapply in a year or so. For DLA to be awarded, the child must need significantly more care/supervision than a child of the same age without those disabilities. That's why it's incredibly hard to get DLA for babies.

Most people wouldn't let a 4-year old go out alone, unless it was just a couple of doors along the road. But at 6, you might let them go to a nearby shop as long as they were sensible and had good traffic awareness. So, using the DWP approach, your son will be more eligible at 6 than he is now at nearly 5.

This is why DLA awards often increase as a child grows up, and why parents should consider seeking reviews more frequently than the DWP does.

Oops, posted before I'd finished!

You also need to make it very clear that he cannot walk safely, because of having no sense of danger, running off etc and has to use an SN buggy. If I was doing your form, I would set out the issues with danger and refusal to do stuff in both the behavioural section of the form and then repeat it in the mobility section, where you explain about the buggy. If the HRC was awarded because of the need for supervision arising from behavioural issues, allude to this in the additional information section, and stress that the behavioural problems that lead to the need for extra care also affect his ability to self-mobilise safely.

Evidence is critical. Is there a professional involved with the family who could write a supporting letter, ideally from whichever agency referred you for the buggy? And send them a photo of him in it - I've advised a few clients to send in photos, and it seems to work.

Child DLA applications were my favourite when I did full-time benefit work, instead of just a bit added on to my support role.

The point about age is really important (to them, obviously we can see that you are doing far, far more than the parent of an NT 4 yo would do). Their argument is that you would have to closely supervise any child under 5, so you aren't doing 'extra'.

But that aside, yes - definitely appeal but get some help and support. In my nearest city there are a number of advocate groups who will help filling out the form, making sure the right phrases are used and the right boxes are ticked. I have lower rate mobility for my son and he is able to walk to school independently now - so you definitely should get it. It's just about doing it the right way, unfortunately. And advocate will know exactly how to express the additional needs in the right way.

I'm from NI so I'm not sure if our CAB would work the same way as the rest of the U.K. Would they still help us? We were sent the forms on DS's third before but waited until he was 4 to apply.

You see I was going to get a report stating our OT's reasons for not being able to complete the forms to the best of her ability because of the references to an adult and not a child but she has told me she's going on leave and doesn't have enough time to write another report for him. I'm afraid to ask again in case I seem pushy or grabby.

We were originally going to wait until DS was 6+ but I can barely go outside now without distressing him. He's non verbal so the way he communicates is screaming, grunting. He has a learning disability as well and is developmentally delayed so there's no way for me to sit and explain to him in order to calm him down. I've had to leave shopping in the middle of check or leave our town center when we've just got there because I can't take what it does to him. All that combined I feel so tired. I feel like I'm failing him.

I wouldn't necessarily agree with statements like the "DWP reject nearly everybody". Our ASD son was given an indefinite award of HRC & HRM at age 3, with no reconsideration or appeal needed. I do know - having read the Decision Maker's guide, which is available online - that great weight is given to professional reports rather than parental descriptions; so in the OP's case, I'd say it is the OT report that has influenced the decision.

I think you can submit further documents in a Appeal, so I would seek a better report from the OT first and then go ahead. Perhaps share the Cerebra guide with the OT where it explains about how a "severe mental impairment" impacts a child's ability to walk, not physically, but mentally; and ask them to write a new report taking the behavioural aspects into consideration. (They are, after all, an occupational- and not just a physio-therapist.)

As for other support and resources, there are some good FB groups, for example I'd recommend "Autism Parents Chat".

Just read your update - I'm guessing the forms in NI are slightly different, and there are possibly different decision criteria. None the less, I think you should pursue the OT for a revised report; respond to her to let her know that it can wait until after her holiday, but that you are expecting her to support you rather than put obstacles in the way.

Eggsy, the forms aren't too different here and criteria is basically the same but I do agree with you that the OT report has played a part in this. Do you think our OT would take us as grabby if I pushed for a report? I told her a few times that it was her report that influenced them and its word from her that would really help. She recommended we get a report from the head of child development as she's not really supposed to do this.

We gave up. My 6 year old is a danger and is severely mentally impaired he should get hrm but gets lrm.

Our council have allowed him to have a blue badge but dla say hes not that bad when its the same criteria for both.

He gets hrc and lrm at 6.

Under 5 they only allow mobility for children who cannot walk at all.

Sodor, does that mean we can't use the mental impairment argument in my son's case? Would it be useless?

In the nicest possible way, words like 'pushy' and 'grabby' have to be banished from your vocabulary. You are your son's only and best advocate, all you are doing is seeking the right support for him.

Every time you find yourself even thinking the word pushy or grabby, stop and substitute assertive and determined.

Google for your nearest Law Centre and see if they can help you. You are not being grabby, the system is broken.
www.lawcentreni.org/

Appeal, appeal, appeal. Keep going.

Try again after he's 5. If he then gets LRM 'update' it in a couple of years. The older they get the easier it is to get the mobility component because the differences between them/their needs becomes much more obvious as they get older

🌺 🌺🌺 for you! Keep going... even though the process is hell! Have you had a carer's assessment for yourself? You need support too. Best of luck!

It seems that DLA/PIP automatically reject nearly everyone, regardless of disability.

They don't, actually. They make some unbelievably harsh decisions, which are usually overturned on appeal, but they also often make exactly the award I have predicted. (Over 2 years, of doing at least 3 applications a week, just over 90% of my predictions were correct. And I have never lost an appeal I expected to win).

I'd advise anyone applying to get advice from "Benefits and Work" on how to complete the forms. You have to be really specific, and on each criterion that applies, spell out how the conditions you have affect your ability to carry out the activity repeatedly/safely/in a reasonable timescale etc and whether you need supervision, prompting or assistance.

I think the decision making in PIP/DLA is far better than in ESA work capability decisions, which are just bizarre.

Sodor, does that mean we can't use the mental impairment argument in my son's case? Would it be useless?

Not Sodor, but you definitely can. If he has to be in a buggy because his "mental impairment" (I hate that phrase!) makes it unsafe because he runs off and has no sense of danger, then it is entirely relevant. Not being able to do something safely is the same as not being able to do it at all in DLA/PIP terms.

If he is under 5 you can only get the higher rate mobility and as others have said that is very hard to get unless they have very little mobility.

The age norm thing is also key here because a lot of it comes down to the supervison side so at 4 as any child would need constant supervision it becomes harder to get.

Ds is 7 and gets LRM and has done for about 18 months so since he was 6.5 ish. It was turned down before then but we asked for a review and got it. We have a renewal in at the moment and I am hoping for HRC but I'm certainly not hopeful even though due to his autism and other problems now we rarely have a trip of more than a few minutes where he doesn't need to use his SN buggy.

I agree with Sirzy I think it's an age thing. My DD has fairly significant night wakenings (which I am not 100% convinced aren't due to discomfort caused by some issues) but are they aren't seen as medical it's considered normal for her age so we get MRC - which is fine, I am happy with that and feel it's fair. I think if she doesn't improve as she gets older, she will get HRC as it's not considered the norm for older children to waken so frequently (However, I am praying it doesn't come to this!).

I think the same is applicable for mobility. Once he is 5, I think you would get LRM without an issue but until he is older, I think HRM under the SMI rules is very strict and not easily awarded. Good Luck and you have my sincere sympathies - life is difficult enough without these obstacles like the dreaded DLA application!

Dont give up.

Ive been there done that and STILL fighting for help, 15 years long. Its never ending.

and its disgusting the rejection and assumptions that these so called agencies and 'proffessionals' make about our kids.

What helped me last time was getting the PIP form filled in by a charity support group for disabilities.

Look up on your local area website and see if there are any.

paerents are nevber taken seriously, Im no liar, nor do i exaggerate DCs disabilities, but it took an ''official'' person to convince them to fuina;lly get DC the help she needed.

it will happen again when shes 16, then 18, etc etc.

you just want to give up but carry on cos you know youhave to.

'they' think youve got all the time in the world to dfill in forms/.go for assessments/ etc etc, all the while looking full time after your kid, it bloody pisses me off, but you just have to soldier on.

please dont give up. good luck.