Help getting HR motability - twins - Nonverbal GDD ASD

[towardsexperience]

Hey all,

We currently get HRC for my 5 yr old twin girls but honestly getting them on a bus in a double pushchair (that they far exceed the weight of now) is nigh impossible and getting them anywhere is an absolute feat.

No danger awareness. They wont walk more than 25 ft without either melt down or behavioural issues, bolting into traffic, or one tearing me one way and the other pulling me the other. I cannot carry them both, let alone one of them. Especially during behavioural issues.

We avoid the buses currently. My husband works a lot of hours and getting the girls to appointments and school means me and them waking at 5am every day, driving 30 min both ways to take him to work, then even having to pick him up in the evening. So 2 extra hours driving, they often only sleep 2-5 hours so thats my lot as well.

We are currently trying to get a charity to help us with a double wagon or buggy. Proving to be really difficult actually, but isnt everything???

They are 'non verbal/ non communicative', Global developmental delay (are almost 5 but act 18mo-2yr), and on the ASD pathway (due appointments in the next 4 months).

I need help in how I word the application for motability. Any advice is appreciated.

They also have hypermobility, and fall over all the time.

Do they get DLA already?

Yes I did mention that. Sorry I wasnt very clear. they get High rate for Care. No Motability yet. But they turn 5 april.

My understanding is motability and mobility are two different things.

DLA (disability living allowance) is split into two parts care and mobility. Motability is a car (or other transport option) hire scheme which is available to disabled people who receive high rate mobility in exchange for part or all of the mobility part of their DLA.

So if you are looking to try and get a motability vehicle through the scheme then you need to apply for DLA and be awarded HRM.

I spoke with DLA this morning, its called motability now. I have DLA. high rate. Now I need to apply for it AGAIN, and make sure I word the motability application appropriately for the 'hidden' diability/behavioural issue that keeps kids from walking like normal children.

Whoever has told you it is care and motability is incorrect. The two DLA components are still care and mobility. The motability scheme is separate and as pp described. But, yes, you will need to do a change of circumstances if you want to pursue HRM. Be aware the care component could decrease. If DTs turn 5 in April you will shortly be invited to apply for mobility component anyway because LRM can be awarded from 5.

With autism there are 2 waits to qualify for HRM - virtually unable to walk and severe mental impairment. The SMI and VUW criteria flowcharts are in this document. You need to prove every part of the test. Also look at Contact’s leaflet.

When you say getting a grant for a double SN buggy is proving difficult, do you mean finding a charity who will offer a grant is difficult or finding a suitable double SN buggy is difficult or just that it is taking a long time?

I don’t think that’s right, I think it’s mobility you are looking for but I’m going to bow out because I genuinely was trying to understand what you wanted to achieve rather than trying to upset you, and obviously like most people on this board I’m a carer and my time is limited and best used where it’s appreciated. I hope you get the answers you need.

Ahh okay. the woman on DLA line today said it was motability. Im originally from Canada so this is still all an enigma. I think what Im missing is that the mobility at high rate can be exchanged for a motability car if Im understanding that correctly. x

I wasnt being hostile. Im just going off what the DLA line told me this morning. I appreciate any help. Its just very confusing to me. Apologies.

Sorry Im new to using this thing. The charities I have spoke to all seem to only do individual buggies and used to do doubles. Thank you for sending me the documents. Im at a lost cause everything is individual basis not taking into our families issue with the double dose. Its all just very intense and confusing.

Yes, some or all of the high rate mobility component of DLA can be exchanged for a vehicle on the motability scheme. Although many vehicles also require an advanced payment on top.

Some of the double SN buggies and actually 2 singles attached together. For example, the Special Tomato EIO, Excel Elise, Maclaren, Axiom Endeavour are all like this. They are attached together with a specific connector.

There are others but you could try Florence Nightingale Aid in Sickness Trust, Boparan Trust, Newlife, CrackerJack and The Genie’s Wish.

Twins do throw up extra challenges and in my experience only you will really know what could help. Do they ride side by side safely or do you need separation? Do you need a buggy for all trips?

I found a bike easiest for a few years. We had a trikadoo which was brilliant but I seem to remember there was one which converted to a double pushchair with big wheels from a trike. NB weight is a real issue. You need to protect your knees and back now rather than wait till there’s a problem.

Yes okay thay makes sense. I know its like a 1000 down payment or something depending on the vehicle. But this makes more sense now.

They unfortunately need separation so one in front of the other is best but honestly Im ready to figure out anything, wven if I have to ride a jimmy rigged shield between them. Ill definitely have a look at the charities you mentioned. thank you so much. xxx

They need the separation so Ill maybe have to jimmy rig something if I have to do a side by side. But my biggest issue is needing to get them anywhere is a real problem. And my body is taking a real hammering managing it at the moment. xx

There are some tandem SN buggies if being next to each there is an issue. For example, the Activate Tandem for kids, Corgi Sprint Tandem, OTTOBOCK Kimba Inline double, Hoggi Custom made buggies (e.g. the Bingo Evolution Twin).

You ca get a Perspex divider fixed. Someone I met at a demonstration told me they’d got one for their ds. I think it was funded through OT. It really sounds like you need a thorough assessment which you could use as evidence for having your DLA assessed for the HRM.

Thank you so much for the names of them. I have really struggled to find something that would fit them and last a little while. The best Ive seen so far is the nipper wagon by out n about but going to look the ones you sent up. I was thinking perspex to be honest, so good to know Im not the only one. Ive called our OT and left a VM today, hopefully she gets back to me. She unfortunately has been very little help and when doing their reports for their EHCPs, copied and pasted into another report shed used previously so one twins info was on one anothers and a random third party child was on it also! So fingers crossed I can get her to assess them in person and write a proper report detailing the concerns we have. Thank you so much for your help. xx

Have you requested a referral to wheelchair services?

There are certainly options. Some double SN buggies can accommodate much older DC. There are even double options for adults, e.g. axiom phoenix and axiom endeavour - although they aren’t easy to manoeuvre!

Yes but the OT said the NHS will not provide for behavioural conditions. How that works I dont really understand... But Im hoping to speak to her today.

Reply, that is absolutely fine. DDs don’t have behavioural difficulties. They have GDD, hypermobility and suspected ASD.

Of course! She was supposed to ring me back today and didnt. Figures. Ill be hounding them until they help me with an answer. Thank you!!