Some advice on tribunals please

kingfisherblue

My friends have a child who has multiple disabilities. She is now eight years old and has, up to now, received middle rate care and high rate mobility. DLA has just been renewed and awarded at MRC and LRM. They have requested a statement of reasons as they wish to appeal.

A little more information - my friend has given me permission to post as I am asking for advice on her behalf and she doesn't have access to the internet. The child - let's call her Jenny to make life easier - has global developmental delay. She has a recent diagnosis of autism. She is epileptic and has both absences and grand mal seizures, altohugh they are controlled to some degree with medication.

Jenny has twice had 'spikers' - the plaster casts that hold the legs apart - as she has hip dysplasia. The latest was sixteen months ago, and part of her pelvic bone was shaved away and pins were put into place. They were removed a year later, but she still walks with a very wide gait. She loses her balance, uses a Major Buggy for any distances, and is being referred for a wheelchair as she is getting to tall for the buggy.

Jenny has very little communication. Upto two years ago, she didn't have any speech at all, despite weekly speech therapy (paid for privately by her parents) and a great deal of input at home. She now has some words, but not many. Clarity of speech is also a problem. Jenny uses some Makaton.

Jenny has some quite severe behavioural issues and when she gets frustrated, she bites, scratches, kicks and pinches. Her mum has scars from times when Jenny has had a meltdown. Sometimes she refuses to walk, and just drops to the ground like a deadweight.

Jenny is awake and up during the night, between two and four times. It can take upto an hour to re-settle her.

She has continence problems, and needs reminding frequently to go to the toilet. Her parents have a sort of child sized commode downstairs for her, as their only toilet is upstairs.She cannot wipe herself, and often has accidents. She doesn't recognise when she is wet or soiled. Her continence nurse has tried alarms and other ways to encourage her to become fully toileted, but nothing has worked so far.

Jenny uses several pieces of equipment to manage everyday life, including an Ipad for communication (provided by school) and Piedro boots. Most has been provided by OT, but some has been bought by her parents.

Jenny's parents are thinking of appealing the new award, as she has such a high level of care needs both day and night. Her mobility is poor, and again, her parents would like to appeal. They sent medical evidence of Jenny's care needs with her renewal form - it was over an inch thick.

Now, CAB say that she hasn't a chance of any higher awards. The form has changed and the CAB have told her parents that because she joins in PE at school, she will not get HRM. PE is compulsory, and it is adapted to the needs of the children (it is a special school). CAB also said that she will not get HRC as her parents cannot explain why Jenny is awake in the night - Jenny wanders around upstairs if given the chance, and drops things over the stair gate, so CAB told them to put a lock on her door.

So, what next? Her parents think that they will have to go to tribunal to receive the higher awards, which I would consider to be correct. they have asked me to represent them, as they think I am knowledgable about DLA as well as Jenny's behaviour, care needs, mobility needs, and her life in general. They also feel that I am of the right temperament, with the intelligence to understand everything that is happening and the ability to put their case forward calmly and accurately.

I have never had to appeal or go to tribunal for my son, who also has multiple disabilities. He has been in recceipt of an indefinite award since he was eight years old.

I know that Jenny's parents can request an appeal and that a reconsideration will be carried out before an appeal actually goes ahead. I'm not entirely sure what happens in an appeal, but I know that a tribunal has a panel of three professionals who ask questions about the child's needs.

Can anyone help me to help Jenny's parents please? I'm not confident that I am the right person to represent them at a tribunal, but I can help them to amass the correct information about procedures and about case law, if this is necessary. They both work, but arrange their hours so that one can put Jenny on the school bus and the other can collect her from it when she returns from school. Holiday childcare is a mix of using flexitime, using annual leave, and grandparents helping out. They are devoted parents who need a bit of support, accurate information, and a friend to talk to. I can provide the first and the last, and I'm hoping someone here can help to point me in the right direction for the middle point as well.

Thanks for reading this epic post, and for any help you can give me.

GlasweJen

Hi KFB, I used to represent people at DLA tribunals when I was a CAS volunteer. You know yourself that for kids DLA is different from adult DLA in that the child is compared to the average non-disabled child of the same age.

Strategically I would go for a reconsideration before appeal in this case - reason being is the resolution is swifter and you can still appeal if necessary after.

First up is the mobility - without more detail I think low mobility might be correct. Can Jenny walk for 100m unaided? Does walking 100m hurt Jenny or cause problems with her hips? Will the wheelchair be for distances only or will she be using it full time? Can Jenny run? You say she has a wide gait, is it abnormally wide and causing problems or is it high end of normal gait?

For care - there shouldn't be a need for a reason that Jenny wakes up so scrap that. When she gets up does she need care? I mean if there's a baby gate up can she get out and hurt herself on the stairs? Does she wet the bed and need changed, bedding changed and all the carry on that goes with it? Does she need settled back to bed or does she do that herself eventually?

kingfisherblue

Hi Jen, thanks for your reply. As you said, I am aware that child DLA and adult DLA are different and on the renewal, Jenny's mum compared her to other children of the same age. There is a massive gap in virtually everything.

Mobility - Jenny's gait is very wide. Her hip sort of swings her leg outwards. It's hard to describe, but hopefully that will give a better idea. She can run, but again with a wide gait, and quite wobbly. She loses her balance and falls frequently. She cannot hop or jump. As Jenny cannot communicate well, she cannot tell anyone if she has pain, but she does not seem to feel pain normally - things that would hurt most people don't seem to register with Jenny.

Walking 100 yards is debatable, as she does not walk it without stopping. She often stops without any apparant reason, and will sometimes just collapse to the floor and refuse to move. The wheelchair will be used as her buggy is at the moment - outdoors, not indoors, and for all but the shortest of journeys. There are times when she walks using the buggy as support.

I agree that there shouldn't need to be a reason for Jenny to wake up, but CAB disagree (the CAB woman is the DLA expert there). jenny does have a baby gate across the stairs, but doesn't have the dextrerity to open it (it's the sort where you sqeeze the handle and lift the gate a couple of centimetres). She wears nappies in bed, but there are occasions when she needs to be changed - not often enough for HRC on its own though. She doesn't go back to bed herself and she takes a longg time to be settled. last night jenny was awake twice. The first time (about 1am) it took 30 minutes to settle her down, and the second time (about 3.30am) was almost an hour. Her mum is keeping a diary on my recommendation. Jenny can be awkward when she gets up - she's up, so her parents should be! She can be disruptive and when her parents have left her to settle on her own, she throws things, empties her drawers, and has emptied a bottle of shampoo in the bath when the lid wasn't properly secured on one occasion. She is also quite noisy and wakes both parents. There are no siblings.

During the day, Jenny is constantly flitting from one activity to another. Her parents are constantly on the go. She's not much different overnight, except that she does sleep in between her bouts of activity.

From my point of view, Jenny should receive HRC. This, along with her behavioural issues and mobility problems, should mean HRM. Technically I know that HRM is awarded for either mobility problems or HRC plus challenging behaviour, but she seems to qualify on both counts (or would, if she received HRC, which I consider to be the correct award).

Feel free to ask more, or to advise me further. I'm fairly sure of my facts, but the CAB advisor has said that Jenny doesn't have a chance of her award increasing, as she does PE at school and as there is no clear reason for her being awake and needing attention overnight. She said that the forms are new, and the rules have changed, but I have told my friends that I am not aware of any chnage in child's DLA, only adults, which is moving over to PIP and taking on a different format (ie, a tick box and points system).

GlasweJen

Ok I'm seeing a HRM case coming on, I think you should choose to either argue the mobility on the gait or on behaviour grounds, at tribunal you run the risk of sounding like you're trying to shoehorn the award if you're pushing both angles.

In terms of the gait I'm seeing things a bit clearer now, what you're saying is even with prescription footwear Jenny's gait is wide and by the sounds of it she would struggle to walk in a straight line? Jenny doesn't walk for many steps at a time and she can't communicate why not so you can argue that she is unable to do so.
Ideally you should back this up, letter from an OT would be perfect, one from her surgeon or whoever is currently seeing her for her hip problems and, if you can wangle it, one from her school - this one outlining the techniques they use in PE (quite frankly I'm appalled at CAB for not recognising that PE in a SN school is unlikely to be cross country running) and how much support Jenny needs to participate.

I think the HRC is going to be tougher - I would go down the "constant supervision" route with it as you don't think she needs enough toileting support to qualify, as a result of this she shouldn't need bathed or dressed much either so in terms of care needs there aren't many despite her being up all night (and waking the house).

The DWP do expect for accidents to be mitigated so you'd need to outline that Jenny wakes at night for reasons unknown because she doesn't have the level of communication required to tell her parents, describe how she is when she wakes - is she anxious, energetic, upset, hungry - does she indicate that she wants reassurance, food, water etc?

The risk of her falling downstairs is mitigated by fitting a stair gate, if the parents could move this gate to prevent Jenny from leaving her room at night what risks does she face? Is she a chewer? Does she ever eat something that could cause damage (i have a friend whos boy eats pillows!) You mention that she is unsteady on her feet - do her falls put her at risk of falling out of the bed? Hurting herself on corners of furniture or trapping herself in bed bumpers or anything else she has upstairs. Would it be fair to say that if Jenny was restricted to her bedroom she could injure herself and not realise she needed help so would not be able to summon her parents? Could you get a report/ set of reports that you could use to outline this or any other night care need scenarios to send to the DWP

If you factor in the above then total up the supervision needed to prevent injury along with the occasions where she needs changing does Jenny need help for at least 30 minutes twice per night for most of the week?

stiltwalker

Sory, nothing more conclusive to add but I agree with you from what you've posted I would certainly be looking for a HRC award.

As far CAB woman says - the forms have changed (notced when I filled DS's in) there are more tick boxes and less space to fill in details together with less open ened questions now that there were when I filled in DD's forms just over a years ago but as far as I am aware they hav not changed any of the essential criteria.

As for PE - how supportive is school? Would they be prepared to detail exactly what PE entails - ie levels of support given and levels of actual mobility required. DD gets HRM as she doesn't walk independently just with a walker and even then needs support. She mainly crawls - however her upper body strength is massive and she will quite happily spend hours crawling and clambering round a playbarn so am fully expecting her to do indoor PE - apparatus and things when she starts school in September even if she can't run round playing football.