motability

[allsetuk]

hello everyone, i have just been awarded high care and low mobility with dla and as a relative newbie to all of this, I am becoming like a "grumpy old woman" ranting to anyone that will listen. I dont know about you but as a mum to an aspergers son, who increasingly needs carrying about 70 percent of the time and has fear and flight response to many things but also needs an incredible amount of input ....from getting out and about in places that he feels safe, i.e enclosed pathways for those opposite moments where its full on running .....i need my car !! , i cant take him on public transport cos if anyone looks at him he hides under a chair or starts blurting out total inappropriate commments

 

.i think we should start a campain to get this motability support to apply to us too. I see the DLA people are making it so difficult for people to get the high rate mobilty as in the poll hardly anyone gets it but i am sure from the heartbreaking tales we read on here every day its something that we all need access too..ive written to the every child matters campaign and the NAS and motabilty to see if anything can be done..what do you guys think??

 

I had to get a car loan that i cant really afford to get my 2nd car and it costs me a fortune to run if this government are so set on "reducing child poverty in disabled familes " then maybe we can do something ... i probably sound like some raving eternal hopeful hippy here but im not ...i just read this site every day and my heart goes out to each and every one of us struggling just to keep smiling .

[dolly]

Hi

Have you asked for you claim to be reassessed? I keep meaning to do this but never get around to it. We get high rate mobilty , middle rate care which seems the wrong way around to me as kofi needs watching 24/7

[allsetuk]

Hi

Have you asked for you claim to be reassessed? I keep meaning to do this but never get around to it. We get high rate mobilty , middle rate care which seems the wrong way around to me as kofi needs watching 24/7

 

i havent yet , only got the award in past few weeks, i asked somewhere else on here what i shoud do as i thought that was wrong but havent had anser yet

 

d

[JsMum]

Whilst I agree that parents should get high mobility I think the whole transporting issue should be made more aware because like myself I have No Choice but to use public Transport because Number one I cant drive,

 

I am learning like mad and trying my best but with a disadvantage of learning difficulties myself its been a real challenge and in a big way I feel I am letting down my own child because I then forced to use transport, its nightmare waiting for a bus, he is in the road, been rude to other people, throwing stuff, and running around, on the bus he climbs around, fidgets with his legs, and gets terribly anxious with other people, he takes his PSP but sometimes we have to go without any plans for the bus journey and he finds it really hard, there is only one bus company that he likes to use, very minimal people with minimal stops, and the staff know J, they have let him drive the bus in the car park once, with the driver helping of course.

 

I have tried in vain to get J a free disability bus pass and still awaiting to hear from our council, he should be entitled but its been really hard to convince them.

 

With this pass he could get on buses and trains free, but I still havent heard from them.

 

Travelling is a difficulty for our children, with the sensory increasing it does make them anxious.

 

I hope that one day that there is a one port place to get everything your entitled because it not exactly advatised.

 

J gets low mobility and we use a lot of it on Taxi fares, because he is too upset sometimes to use the bus.

 

Like anything with buses they always take 40 mins waiting and then three arrive all at once!!!!

 

I think mobility does need a real shake up and awareness but all modes of transport, car, bus, train, airoplanes ect..

 

we cycle mostly, and have a Tandem, thats run and enviromentally friendly.

 

JsMum

Edited May 6, 2007 by JsMum

[Elly]

hello everyone, i have just been awarded high care and low mobility with dla and as a relative newbie to all of this, I am becoming like a "grumpy old woman" ranting to anyone that will listen. I dont know about you but as a mum to an aspergers son, who increasingly needs carrying about 70 percent of the time and has fear and flight response to many things but also needs an incredible amount of input ....from getting out and about in places that he feels safe, i.e enclosed pathways for those opposite moments where its full on running .....i need my car !! , i cant take him on public transport cos if anyone looks at him he hides under a chair or starts blurting out total inappropriate commments

 

.i think we should start a campain to get this motability support to apply to us too. I see the DLA people are making it so difficult for people to get the high rate mobilty as in the poll hardly anyone gets it but i am sure from the heartbreaking tales we read on here every day its something that we all need access too..ive written to the every child matters campaign and the NAS and motabilty to see if anything can be done..what do you guys think??

 

I had to get a car loan that i cant really afford to get my 2nd car and it costs me a fortune to run if this government are so set on "reducing child poverty in disabled familes " then maybe we can do something ... i probably sound like some raving eternal hopeful hippy here but im not ...i just read this site every day and my heart goes out to each and every one of us struggling just to keep smiling .

 

Getting High Rate Mobility is extremely hard and the chances of getting it for the reasons you have stated are slim

Please stop before shouting at me, I am on your side and know how you feel. I have a daughter that used a major buggy until she was 10yrs old and could not get it. I also have 2 children with ASD and know how hard getting about with them is . I have been in a wheelchair now for 5 yrs and had to fight tooth and nail to get High rate mobility. It was finally awarded 2 years ago. Since then we have fought to get the care component raised (I was on low rate) and only won that battle early this year The system is useless and forgets that no disorder or illness fits into the same hole, every sufferer is different. It also does not take into account the serious difficulties parents have when trying to take out a child with emotional/behavioural/sensory issues. If only we could let the pen pushers look after our children for a couple of days

Keep smilin

Elly

[dolly]

Im also a non driver and even if i could the thought or driving with kofi as a passenger fills me with fear!

Im lucky was able to get a free bus pass for kofi plus one companion without any fuss. This was after one of the bus drives told me about it until then didnt even existed. One of the councils well kept secrets

[Shnoing]

I don't know if you can trigger it but public transport is no problem with our son (3) because trains, buses etc. are his special interest. His favourite game on the tube is to predict the 'colour' of the next station. He just doesn't realize if anyone is looking at him because he's 'absorbed' by technical details.

Btw <'> >< <'> to you both.

[elun1]

Hi I get higher rate care and mobility for ds2. Always had higher rate care but when we applied for care when he was 5 we only got lower rate. I appealed and got it 2nd time around. I think what swung it was O's Paediatrician wrote a letter stating that as well as severe autism he has Severe Learning difficulties so therefore met the criteria of 'severely mentally impaired'. Without Paed's letter I don't think we'd have got it

Elun xxx

[allsetuk]

interesting reading all your thoughts, yes good points about the transport and difficulty everyone is in ...and how it affects everyone in different ways, i need my car, but at times it can be really difficult to restrain my son or afford to keep the car going with bills petrol repairs etc ..i would prefer to be eco concious and motabilty lets those who are entitled get bio fuel cars and allsorts .........also those of you that dont drive im sure i read somewhere on here you could get family fund help for driving lessons ....i wasnt actually saying i want high rate mobility but i would like to get some attention drawn to the factors affecting everyone here that make public transport /or access to cars difficult thats what i meant.....and maybe some concessions or considerations for low rate mobility recievers ....rather than just no help at all unless u are on high rate.

 

i agree with your sentiments the system is useless...if even in a wheelchair you cannot get what u need ....what is the government thinking

[allsetuk]

i sent a query to the everychild matters campaign i thought you may like to read the reply as it features some helpful points for all of us and something of interest

 

Dear Dionne,

 

Many thanks for your email. You set out exactly why our campaign is needed - to get a better deal for families with disabled children. Please do ask all the parents you are in touch with to sign up to the campaign at http://www.edcm.org.uk - together we can really begin to change things.

 

The focus of the campaign so far has been on issues like short breaks, childcare and other services that families tell us they need. We have been working on a major government review of services for disabled children which is due to report later this month, and we are hoping there will be substantial new funding announced. Watch this space!

 

We have also highlighted benefits issues like Disability Living Allowance, and are lobbying Ministers and officials in the Department for Work and Pensions to increase the payments at all rate for both Care and Mobility component. We have also supported parents who have been lobbying on the Blue Badge issue - see

http://www.edcm.org.uk/Page.asp?originx_96...0k_20072275342a

 

Once the government review has reported, we will be looking again at our campaign priorities in September, and we will be asking our supporters what they think we should prioritise - I'm sure benefits, mobility and transport issues will be high on the agenda. If you and all the parents you know sign up as supporters, and tick the box allowing us to email you, we'll be in touch about this in the next couple of months.

 

In the meantime, the Contact a Family helpline has a range of information sheets that tells parents what they are entitled to - because in fact, families should be getting support from a range of sources, not just the Family Fund. The Helpline contact details and factsheets are at http://www.cafamily.org.uk/helpline.html - do spread the word. Contact a Family Helpline can also put you in touch with parent groups who are campaigning to improve services locally.

 

Thanks again for your email and your interest in our campaign.

 

All best wishes,

 

Steve

 

Steve Broach

Campaign Manager - Every Disabled Child Matters

Council for Disabled Children

National Children's Bureau

Edited May 8, 2007 by allsetuk