Equipment you have for your needs (C.P)

jmabnc

Hi

I would like to ask what equipment you have at home to help, I have a child who is 9 y.o,she has Cerebral Palsy,we have an O.T coming out next week to see about a shower,but I would like to ask for some other things also,eg step to be taken away,any advice would really help as she has not been seen for two years.

If you could help,Many Thanks.
(ps,we live in Northern Ireland)

kingfisherblue

My son has Down's syndrome and several other conditions.

We had a downstairs walk in shower, toilet and washbasin in an extension paid for by a disabled facilities grant. We had to pay a proportion, but I think the rules have changed if it for a child.

My son also has a non-slip step for the bath, a wheelchair and a matress raiser (to keep his head higher than the rest of his body while he is in bed, because of reflux). We were offered hand rails for the steps or a zigzag ramp (which would have taken away our small front garden, due to gradient rules), but didn't have either put in. My son is older, now, though, and I am thinking of having the handrails installed. He used to be small enough to hold onto the walls at the side of the steps, but is too tall for that now. We also have a large foam wedge for his physiotherapy.

You could consider appropriate seating. Does she need a higher toilet seat to make it easier for her to use the loo? A shower seat? Specialist cutlery? An extra bannister fitting so that she can use both hands when on the stairs? A ramp instead of the step you mention?

mrscb

Similar things really, Our son is 10 and has CP.In ours we have,
Downstairs bedroom(or a lift can be provided but they do take a lot of room) with hoist over bed,special adjustable bed with clear plastic door panels around( so he can still watch tv and wont fall out of bed)
Light swiches etc at a suitable height for him.
Bathroom,(wet room) level access shower,shower seat,toilet seat,pull cords for light etc low enough,special taps.A word of advice...dont get the bobbly flooring its a nightmare to clean.
Outside,Ramp built and front door with low thresh to allow wheelchair over.
HTH
Good luck.
We always work on the opinion everything we need takes about a year to put in place so think well in advance!!!!

jmabnc

Thank you for your replys,I just dont know what things she needs,sounds silly I know,she is not in a wheelchair,but has problems with walking,she has vision problems also.Any other help would be really helpful, Thanks again.

amilotte

Hi

It may be better for you to compile a list of the difficulties your daughter has so that you are prepared when the OT visits. Its the OT's role to assess your daughter and suggest any equipment/ adaptations that would meet her needs, they have the knowledge of lots of equipment to meet different needs and so should be able to guide you. Don't be panicking about coming up with a list of equipment for them as what works for one will not be suitable for another and given the difficulties your daughter has may be able to suggest solutions that you may not have even thought of!

HTH

Penny-Pincher!!

I've had through my OT:

Stairlift, Wet Room, Front step put in (too high for me to get in), Sink in toilet, Sofa raiser, Pillow Lift, Over bed table, Stool x 2, Bath Lift (before shower put in), Toilet surround, Handles, Grabber (cant bend down), Special Cutlery (cant grip well), Special Taps, Bath Board (before shower).

My GP has also supplied me with a manual wheelchair which has special cushions for my spine and hips.

I have a great OT and have annual assessments.

HTH

PP
xx

bitsandpieces

Also worth thinking whether anything school-related would be useful. Any kind of reading/writing aids, or computer/ergonomic stuff?

snoopy58

Hi

For school:
1. - special grips for pens/pensils - triangle shaped - can be purchased from ELC or WHSmith (I think)
2. - ergonomically shaped pens
3. - ruler with raised lip along the centre (for gripping)
4. - compass - can't remember the make, but you can get really good one with good grip and easier to see - should be in the school ESPO catalogue
5. - sloping desk top - moveable item that can be moved from desk to desk
6. - desk top magnifier - again from the school ESPO catalogue or from Visual Impairment Service - not too expensive (maybe £20 ish) and should be bought by the school.
7. - look at the possibility of using a laptop or AlphaSmart (light weight keyboard).
8. - keep all documentation for future use for a) future DLA claims and b) exam arrangements as your daughter moves up the key stages.

HTH

Trix

My 11 year old daughter has CP (!!!!!! diplegia). Apart from the wheelchair, this is the equipment we currently have for her:

Stairlift (THIS one)
Shower chair
Electric bath seat (THIS one)
Transfer board to use from bath seat to shower chair
Wall bars either side of toilet (one fixed to wall - the other side folds up to the wall)
Step to use when getting her to take some of her own weight when transferring from chair to toilet etc
Rotating board (put it on step/floor & she puts her feet on it and we can turn her around to help with transfers...does that make sense? )
Chair/toilet thing :rolleyes: (sort of like a commode - but can be used as a chair with a tray on)
Standing frame
Leg gaiters
AFOs
Non-slip placemat
Small postural support armchair (THIS one)
Electric adjustable bed
Over-bed table
Sleep system
small wooden stool & ladderback thingy (she does conductive education & that's some of the equipment they use in school)
Coloured stickers for her laptop keyboard

There may be more 'bits' that I'm forgetting about though :think:

We actually need a lot more things such as ramp to front door (but can't because no front garden) and through floor lift (but no reasonable place to put it) and hoists etc, but we're managing for now because we're sorting this house out to sell then looking for another one that will be more suitable

The OTs are 'supposed' to be able to assess your child's needs and find the best equipment for you - but that has rarely been true for us :rolleyes: A combination of advice and joint visits from my daughter's school OT & physio with the community OT, plus advice and suggestions from other parents at my daughter's school and my own research has been the way we have managed to find the most suitable things for our needs.

Do try and have a think about your/your daughter's day to day activities and what is 'different' or more difficult than it would be with a child of that age without a disability. E.g. - getting up/going to bed, dressing, toiletting, bathing, going outside in the garden or whatever, going out to places, getting around the house, eating, drinking, writing/drawing, playing and that sort of thing before the visit.This will make it easier to think about what help is needed (because sometimes it's hard to just think on the spot!) and will make it easier for your OT to let you know what is available

Js_Other_Half

http://www.direct.gov.uk/en/DisabledPeople/HomeAndHousingOptions/YourHome/DG_4000642

http://www.nihe.gov.uk/index/hig_home/grants_available/disabled_facilities_grant.htm

jmabnc

Thanks to everyone who helped,it went really well,she was lovely and very helpful,she is arranging a shower,getting the driveway fixed,hand rails,and a wheelchair,and other things for eating and doing homeworks,thanks again.