'Access' needs to mean more than just wheelchair access

[donkeyderby]

As I am sure some of you know, when you have a child with severe learning disabilities, or severe autism, so many activities and places can be inaccessible, despite the presence of ramps, disabled loos and hearing loops etc.

I am struck by the difficulties my friends and fellow parent-carers have keeping their severely autistic children safe anywhere. We have recently been on a holiday in a centre especially adapted for disabled people. For wheelchair users, it was great - more hoists than you could shake a stick at - but it was a nightmare for some of the parents whose children are runners with no sense of danger - exits everywhere, straight onto a road and no way of locking the doors from the inside, unsafe light fittings, kitchens with no gates, no stair gates anywhere. I really felt for them because they couldn't relax for a single minute.

It's the same with parks, most holiday homes/caravan parks, leisure centres, cinemas and almost anywhere really, unless it is specifically designed for severely autistic people (where are these places?) or they have constant 1:1's round the clock. Why, for instance, are there more and more wheelchair accessible caravans, but apparently no fences allowed round caravans in most parks?

I would like the concept of 'access' to be officially extended to include this group of children and adults and for every area to have a centre that is truly accessible for them, i.e., completely safe with key pads on the doors, safe fittings, strong furniture etc.

Do the NAS do any work on this? Does anyone know of organisations who work on autism-friendly designs/features in buildings?

Completely agree. But it's a concept that so many have difficulty with. Ofsted for example fussed a bit because the respite centre my son goes to has locked doors (keypad). er there are 6 children there at a time- ALL with SLD's, what's the alternative that the children get run over? So if they don't get it I don't really know what hope there is.

The challenging behaviour foundation might do something along these lines. Or Mencap?

I agree. We were offered a free holiday by Mothers' Union, and our first thoughts were "Where are the stairs, because there will be no stairgates? How open plan is it? How easy will it be to contain DD1?" It was exhausting just thinking about it.

As it happens, we can't go anyway now, because DH can't get the time off as another colleague has already booked that week

You know, even though my uncle and one of my mates both use wheelchairs, I agree with you!

It's a similar situation for me with visual impairment. Plenty of Braille everywhere, but, things written in pink text on white backgrounds, in tiny font, in curly writing, etc etc.

Example: Those wall mounted menus in fast food places. Very rarely have I been able to find a copy on the wall or somewhere I can read.

I don't know anyone who has a child with ASD, so I can't see the world from your POV, but I agree with you all.

Even the milder end of ASD can be a nightmare. Went on day out to Cheddar Gorge with both DDs last year. There are a series of attractions along a very busy, road running through the gorge. We went into the main attraction, the caves. They had those commentary things on handheld units, and they had a separate commentary for children. We started off together, DD2 doing childrens version. After about number 3 she had finished and I was still listening and she asked if she could go on to the next one. By the time I got to it she was nowhere to be seen. To cut it short, I ended up running around the entire cave system several times looking for her with growing horror, terror etc. when couldn't find her. Then thought to listen to the childrens commentary. Got to number 3 and it said remember to check with your parents before continuing - well she did didn't she, it didn't say to do it after each one! Then at the end it directed them all the way out of the attraction to the street (and the very busy main road etc.). So went haring outside and thankfully found her sitting on a bench at the roadside, rather worried as there were no further instructions! Then had massive argument with gate staff (they had staff and gates to stop you getting in but not out!) trying to get back in as had left DD1 in there with strict instructions not to move while I looked for DD2. I know as parents we have to be vigilant and assess whether somewhere is suitable, but would be good to more awareness of this type of issue. If they had asked someone with knowledge, a few changes in wording would have helped a lot. Always meant to write and point out the issues, but life was a bit stressful and I never got around to it - this post has reminded me, and will follow it up.

I suppose it is impossible to make all places autism accessible but there has to be somewhere in every region - for God's sake - that a severely autistic/SLD runner/escape artist, can go to without fear of their sudden death on a road outside when they escape. What is more, it surely must be a human right not to have to be watched every single second of the day and to have a bit of freedom.

Saintly, if it's any consolation, Ofsted are a bunch of arseholes on many issues, not just this one. Interesting to hear your different access issues lollipop.

Agree.

Would like some special cinema viewings as well - none available here I know there are some elsewhere- because ds1's noises mean I cannot take him to a normal show and I'm sure he would love it.

Our local ASD cinema showings (just started up a few months ago) are organised partly by the NAS. Contact them and ask them to organise something in your area. You never know.

I agree, we took the dd's to Moors Valley last week, the place was lovely but we spent most of the time trying to keep up with dd2, we lost her a few times as the play areas were not secure (no fencing), although the dd's loved the open spaces it was very hard work for dh and i.

Our cinema does not do ASD viewings (they do free passes).

The NAS has folded in our area. I did try to find out about organising a screening myself but didn't get very far.

The respite centre I used to work in has a 'basic' room for the children who wreck things in the night or those who can't cope with too much in the room etc.To pass OFSTED they had to put posterson the wall and Tv/music system in as OFSTED said that the room wasn't fit for a child to stay in

Our local respite centre (along with its sister house) are sheduled for closure because they are not 'fit for purpose'. They have poor accessability and equipment for severe physical disabilities (only downstair bedrooms are suitable) but are very ASD/SLD friendly (well fenced garden, sensory room, locked doors, safe windows, simple rooms upstairs, understanding staff, etc).
Disabled children have different needs - equipment essential to one childs needs may be a hazard to another.

I'm working with the British Standards Institute on buildings and open spaces accessibility for many disabilities currently not covered by BSI8300 (which is about 200 pages of information on how to cater for wheelchair users, plus a minor mention of a couple of other disabilities).

If that happens (funding issues...), that work will inform the Government, charities, builders, planners and everyone else.

It's a start.
The access issues around disability are HUGE and most service providers do almost nothing.

Read and enjoy the Equality Act that is due to come into effect in Oct 2010 too - it gives very strong powers to courts etc to force service providers to cater for ALL disabilities, not just the ones they fancy or think are important. That includes websites, accessible readable materials, proper thought for every disability, no just ignoring people until they go away. Maximum fines for dual disability discrimination and associated factors is likely to now be anything up to £1 million in some circumstances, say lawyer acquaintances of ours. That should focus a few minds.

I was prevented from converting a chapel into a nursery as I couldn't afford to make the upstairs wheelchair accessible

The rest of the building was really friendly to lots of different sorts of disabilities but this upstairs being wheelchair accessible was a deal beaker - I do think it was short-sighted of the planners

It's ironic that I hate having to take DS1 into a disabled toilet, where the nappy changing facilities often are, since he can NOT leave the red emergency cord alone.

Recent case, Nov 2009, forced Royal Bank of Scotland to pay for £200k in works to get a wheelchair user to the cashiers, even though there were other means for him to access the service. They're getting very tough with access things now, at long last. First ever case involving a service provider being forced to adapt even if they thought they were being reasonable. The word 'reasonable' is now no longer applicable.

From October (we understand) the only reason to exclude someone from reasonable enjoyment of all/part of a service will be 'proportionality', after a proper audit and planning and consultation and sensible thought. E.g. 'if we do that, we'll be bankrupt' or 'if we do that, there will be a severe risk to other service users' or 'if we do that, a large proportion of our other service users will no longer have a service and there isn't a way round it'.

This is all informal thoughts from me, by the way, since I'm not here in any official capacity and there isn't a single word of official guidance available from anywhere at all until June. Watch out for government bulletins thereafter.

I hate using the disabled toilets to change dd2, we all bundle in (me, dd1, dd2 in a buggy), change dd2 and then one of us turns around and sets the hand dryer of causing both dd's to scream, we then make a quick get away .

Hand dryers should be banned .

Life is so much easier now both of mine have grown out of their fear of hand dryers. I even got DS2 to try out a dyson one, last week. He wasn't impressed, but didn't do anything drastic like scream or jump into my arms and fall asleep!

Amberlight - all very interesting stuff. I hope that the Health and Safety excuses won't rule out positive change.

For instance, Aiming High in our locality put a fair bit of cash into making parks 'accessible', along with a pot of other funding. Not only do there not seem to be any additions to play equipment for physically disabled children, they seem to be making it worse for escape artists by removing fences. I fed back to them that what we needed was just one measly park with one measly area with a high fence and one exit, to have the odd measly picnic in safety. I was told it contravened Health and Safety because people could become trapped in said area by an aggressor. We will simply have to go back to our idea of having a picnic on a tennis court.

saintly I don't think it's our local Autistic Society who are putting on the cinema shows as it refers to the NAS. I will email the lady and see what can be done in other areas

donkeyderby, you and I must be as confused as each other! Tennis courts etc are always designed to have fences all the way round and lockable exits...so what on earth is their 'elf and safety problem with the general principle of that? Almost any ordinary room in any building in the world only has one exit! What are going to do - ban then all?! Make us live in the fresh air? Totally bizarre!

Our LA has purchased a woodland lodge, its a big cabin type thing. I was really pleasantly surprised to see that it was geared up towards people with LD.
All the windows & doors were lockable, all the heaters had covers on them, the kitchen area had a stretcy sort of pull out gate, not particularly robust but enough to delay an eager child.
The decking also has gates at either end, agian climbable but at least they are trying.

So with just a bit of thought & not a huge expense it is possible to have somewhere to accommodate all.

anonandlikeit, yup. With a bit of thought most places can be made escape-proof and safe. It's not as if it's just children with a disability....most children go through a phase of escaping, and it's a relief to know that they are safe.

Mine was Mr Escapo. If there had been gold medals for escapes, daring, dangerous or otherwise, he would have won one. How he lived to be a teenager is anyone's guess.

And now he's nearly beside himself from having to work or access places where the rest of autism access is naff, leading to stress, migraines, unable to concentrate, etc etc. Same for me.

What a shame our LA has purchased a caravan (not free, and at around £350 per week, not a complete cheapie) which has ramps, low kitchen etc., but no fence around it and lakes and a beach nearby. ASD nightmare once again.

I did a site survey of one of those 'lifestyle second homes developments' a while back. 350 homes being built around lakes - and not one of them allowed fencing.

Er, Lakes! Children? Dogs? Hello?

The lodge is near a lake, but they've picked a pitch far enough away to give you half a chance of catching a runner & it is heavily subsidised, about £20 for a weekend & it sleeps 8 so you can take family/carers.