Can I ask what level of disability allowance you get for SN child?

[IceCreamSummer20]

Just that really, it appears to be quite hard to get the right level. My child is severe ASD - no sense of danger etc - I think he’s on too low a level (low rates). He needs constant care and only just out of nappies, age 8.

When was it last updated? I think that can make a difference as younger dc all need a high level of care even with no SNs.

Low rate care for Ds with ASD, nephew with more severe ASD has middle rate care and low mobility.
Agree that it's harder to get for younger children as there's less obvious difference in care needs compared to other children. Anecdotes about meltdowns help on the form.

My son who has a genetic condition plus moderate asd gets high rate care and low rate mobility. We had to appeal to get both. He goes to a special school, has limited language, severe sensory issues and no sense of danger. We had to prove he needed support during the night to get high rate care. He has been toilet trained since 4 but still has accidents occasionally.

Thanks for this it helps. DS has moderate motor skill difficulties (can’t play football or use cutlery), Significant language impairment and behaviour difficulties, in special school. I’d say the behaviour is the most impaired - we can’t do anything without careful planning.

@weepingwillow22 how did you prove he needed night care just out of interest?

Middle rate care and lower rate mobility here for severe asd.
Im not really if it will be renewed. We had very good evidence from school and behavior experts about how he cant be left alone at all. It seemed to be all about compared to other children of his age.

Have you looked at the Cerebra guide? Also, have a look at the rules for the SMI criteria here.

DS1 (multiple dx, including complex MH problems and a medical condition) gets HRC/HRM. HRM was surprising, and I think we will lose it on renewal. DS2 (medical condition) gets MRC/LRM. We did get HRC until the last renewal. DS3 (multiple dx, including ASD and a medical condition) gets HRC/LRM. We sent evidence from HCPs, school and DS1&3's EHCPs.

[quote IceCreamSummer20]@weepingwillow22 how did you prove he needed night care just out of interest?[/quote]
We used a letter from his pediatrician, a report from the society that supports his genetic condition and a diary I wrote of when he wakes and the support needed to get back to sleep. I get the impression from others who have been through the process that the vast majority of claims are turned down initially but then win on appeal.

Thanks @weepingwillow22 DS has sleeping issues - I read the guidance it says to assist physical needs / safety at night. I’m glad you got it in the end, it is exhausting not being able to switch off completely at night! So it’s good that you get assistance.

@10brokengreenbottles haven’t looked at the guide - think I must thank you!

@wagtailred yes I think I just didn’t push it enough about how different it was. I tend to try and ‘be positive’ about DS but slowly realizing this is not helping me in terms of support!

Eventually, we got HRC for DD1 for care and mobility - with help from a welfare adviser, who threatened tribunal.

As pp have suggested, I would keep a diary of what you have to do for DC day and night!

My 10 year old is higher rate care and lower mobility. He is autistic and has ADHD but also has problems with his lungs and is tube fed including over night

My son got MRC at three and LRM added on at five awarded untill he was 16 he has severe autism and learning disabilities non verbal at a special school ,however I took it to tribunal and he now gets HRC and HRM under SMI rules

Dc1- high functioning asd - lower rate care
Dc2 - ehlers danlos syndrome type 3, sensory processing disorder, autistic traits - gets nothing
Dc4 - ehlers danlos syndrome type 3, cleft lip/palate, gdd, hydrocephalus, various minor brain abnormalities - gets nothing
Dc5 - gdd and being assessed for autism - middle rate care

DS is 8 and has ADHD. He is very impulsive and though he does have good road sense he would try and find his way somewhere he felt like going. He needs help with out of school activities and we can't use a regular babysitter. He needs more supervision for most things at home and he has regular meds and OT (when they bother to send us any exercises).
He gets mid rate care and (new this year) low rate mobility.

@elliejjtiny - how does your dc4 get nothing?

@drspouse the dwp assessor said it was because the school said he was helpful and likes to tidy up. I did offer to send dc4 round to the assessor's house to demonstrate how he tidies up by turning on the hoover and sucking up anything that gets in his way and putting anything that doesn't go up the hoover in the dishwasher but strangely enough the assessor declined . He is being assessed for an ehcp this year hopefully so I will reapply then.

DD1 (14) - Initially GDD, then MLD (although school profile now says SLD), with brain malformation and historic epilepsy: HRC, LRM.

DD2 (13) - ASD. Initially denied DLA, then awarded MRC, LRM on mandatory reconsideration.

Ds aged 8 gets high rate care and low rate mobility. He has asd, dyspraxia, learning disabilities and hypermobility. He also has a diagnosed sleep disorder and takes melatonin- which I’m sure helps satisfy the night time care needs in order to get the high rate element (the night time care is what makes the difference between mid and high rate). We used the cerebra guide. He attends complex needs school and has an ehcp. We initially applied for him at 2.5 prior to his diagnosis and were given high rate then. It was renewed at 4 until he is 16.

Ds has had HRC and HRM since he was five he has autism. Dd has HRC and LRM since she was three. Before they qualified for mobility they got HRC. Now on PIP they have the same awards.

Should add dd has autism as well and Ds got HRM on the grounds of arrested development rather than severe mental impairment because he has no learning difficulties and no physical difficulties, in fact he runs like the wind.