For those that read the blog, you will know that dinky was referred to wheelchair services due to the problems created by her ASD-PDA.
We were having issues with refusals to walk due to the demands and anxiety, limited road safety awareness, and issues with running off public transport before the correct stop!
Dinky had an assessment with wheelchair services, where it took 3 of us to get her into the room to be measured, and the 30 minute appointment took 1 hour. Dinky struggled with the measuring and it was agreed that there was a clinical (not physical) need for a product from wheelchair services.
So we received an appointment to come back and be fitted for a chair. Apparently she was too old for the Maclaren major elite
This is due to the buggy being deemed inappropriate for children over 5.
So when we arrived at her second appointment she was prescribed an action 3 junior wheel chair
(But with pink not red) Again the appointment did not go smoothly, dinky refused to get in it with the lady there, she had a massive meltdown almost tipping over thousands of pounds worth of hoist, throwing chairs and hiding in the storage cupboard. Eventually it was fitted in a round about way and off we went.
Straight away her verbal stimming at the bus stop was looked on sympathetically and not as an annoyance!
There have been very few meltdowns out due to the reduction in demands of staying next to me, and waiting ect, she can play her iPad on the move with a play tray.
The only problem is… It is VERY medical looking. Firstly we have had people we know ask “what on earth happened to her?”. Which neither Dinky nor myself appreciated very much.
Also when Dinky has gotten out of her chair we have had some awful reactions from the ignorant masses.
So I have been trying to get something in between. On my search I found this…
There is a slightly more expensive version called the convaid, but I like the Trotter as a good half way house for only £299.
So I called the wheelchair services, the person on the phone basically said it was tough luck as the wheelchair we have meets her clinical needs.
So the social worker said there are charities to help.
I went to newlife foundation, who said they could help but I have to have exhausted local NHS avenues first.
I spoke to a lovely man from chariot (www.specialneedspushchair.co.uk) about the Trotter so I could see if it was suitable, he told me about the independent wheelchair voucher.
I was apprehensive as I didn’t want to make a fuss, that was until an incident at the post office where we had an awful experience which wouldn’t have happened if we had the trotter.
So I wrote a letter to the wheelchair services.
My main point was
If the perception that the Maclaren major is not age appropriate due to the ‘look’ of the product, then the action 3 junior, is also not appropriate due to the medical ‘look’. It is the ‘look’ of the chair which leads to the belief that a child sitting in the action 3 junior is physically disabled with severe mobility issues.
The range provided does not take into consideration the needs of children with complex neurological conditions who may need a chair to travel in.
I did say that other parents of autistic children have the convaid or the trotter.
So Monday I got a phonecall while dinky was out at the farm with her SN group, they are willing to issue a voucher but the stipulation is that they have to see Dinky in one before they would issue the voucher. She gave me a list of mobility shops using the voucher scheme, the value of the voucher would be £348.
Phone call after phone call and none stocked anything similar to the trotter. Most were put off by the stipulation that they would have to source one and possibly not be paid for it if the wheelchair therapist didn’t deem it suitable.
We had no answers by the time dinky got back at 3.30
Tuesday (yesterday) I was on the phone again to companies, trying to find suppliers myself. I talked to suppliers in the north, and the company that provides the LA hospital equipment… no luck… I had one shop willing to get it in and test in instore- but! Because they changed their name they are not on the voucher scheme list, and they could get the chair… For £525.
I phoned wheelchair services back and I must have got through to the same unhelpful person I had spoken to before who again said the chair we have meets the clinical need so the offer made is the best we are going to get.
Not happy at the ‘like it or lump it’ approach, I phoned PALs.
I explained the predicament, and was told to leave it with them.
Today I have had 4 calls from wheelchair services, and the last call was to say that the chair would be sent from chariot (specialneedspushchairs.co.uk) to trial early next week, but I would need to pay £110 for the rain cover and the canopy which is shaped to provide a feeling of a safe space, good for sensory issues. Which is fine by me definitely better than the shortfall of £200 before accessories from the local shop.
So PALS were definitely the way to go, and we shall see next week if Dinky can have the chair! This opens the door for other children in the area to ditch the action 3 and get a special needs pushchair for their autistic children!
A fight well worth it… But unnecessary as in the end the wheelchair therapist actually sorted it… After PALS were involved.