Social Services & Transport & School

keyser666

Hi wonder if you can help. Currently my nephew who has MECP2 (rare genetic disorder)

He is 5 years old. He has no motor skills, cannot walk or talk and is PEG fed. He has Hypotonia and is susceptible to infections which for his condition are life threatenbing. He has to be cared for 24 hours a day. He has seizures daily

He goes to a school that caters for his needs and others of similar disability nature. He is brought to and from school daily by us the family on the following days:

MON - AM/PM
TUE - AM
WED - PM
THU - AM/PM
FRI - AM/PM

On Tuesday evening he is brought back to a teacher at the school for an overnight respite, this is an official respite organised via Social Services department. A Taxi is paid for to bring my nephew accompanied by the teacher back to her abode and a taxi is paid for to bring him back to school the following day, the bill for this is picked up by Social Services. It is a taxi company that provides this service with a big enough people carrier to ferry them back and forth including his big wheelchair. The weekly cost for these two trips is £75 (If I got this people carrier taxi it would be £7 there and £7 back, what a disgrace of a markup!!).

The issue we have is that Social Services are having budget cuts and are saying this now has to stop and they cannot pay for it anymore. I have spoke to the local council SEN transport officer and as he is going to respite overnight they cannot pay for it, only for transport from his home to and from school and say this issue lays at Social Services door. We out of our own pockets because of his needs and lack of transport training bring him to school 4 days of the week which saves the council far more money and they want to take this one day a week from us. This day gives my sister and the rest of the family much needed rest and allows us to work the other days around him.

Question, can they withdraw this facility?
If they cannot what do we say? Any statutes?

Ms_Chocaholic

Which part are they refusing to pay for, the respite or the transport, or both.

Is your nephew's respite carer a teacher at his school?

Could you enter into a private arrangement for the respite with the teacher which your nephew's parents could pay out of your nephew's DLA (assuming he gets it).

converted

The 5yr old should be getting the high rate mobility component based on the information given, this amounts to £57.45pw - as you state it is costing the tax payer £75 per round trip, but would cost the family £14, I think this is where the expectation that the mobility component should be used as this is what it is for. I totally agree with you the mark-up these companies charge is disgusting and should not be allowed

keyser666

Yes he is on the higher rate DLA converted. I totally understand that this is what the mobility compenent comes into but we utilise that with the specially adapted people carrier she has with it. By going to collect him and dropping him off and picking them up the following morning hardly makes it respite, the extra windows either side where the taxi takes the strain give her and us an extra 12 hours out of a 24 hour period and makes all the difference

Ms Chocaholic, the issue is only the cost of the taxi not the respite.

FBaby

Can she give the money to the respite carer to arrange the taxi herself?

FBaby

Sorry, just realised that the money is used for the motability car. Any chance the carer be added to be able to drive the car? After all, it is for the benefit of the child so it would make sense it should be used by the carer on that day.

keyser666

FBaby wrote: »

Can she give the money to the respite carer to arrange the taxi herself?

I suppose she could but as a single mother and finds it a struggle as it is

Ms_Chocaholic

Are you saying your sister (or a family member) take your nephew to school each day and pick him up at the end of each day. I'm not quite sure why you do this and, if you do, the money saved on your petrol costs on the daily runs will help towards the taxi for the other day's respite.

Tigsteroonie

Could she insist that the LEA provide suitable school transport (which they should, or recompense the family for your costs if they cannot); then use the money saved on not making those journeys themselves (or what is paid in lieu) to finance the transport to and from respite?

Seems that £14 wouldn't be too hard to find. I accept that the DLA mobility goes towards the car (as does ours) but there is also the DLA care element and the disability premiums in CTC.

She could try approaching others for a grant to pay towards the respite transport costs - Family Fund, local charities, maybe Rotary / Lions / Variety Club ..

But no, I don't think there is a statute or precedent that says transport has to be provided to respite. No doubt the teacher is receiving payment for giving that respite - I'd imagine the rate is negotiated, so perhaps one hour's less respite equals provision of transport, or something.

Have they been offered direct payments under your nephew's EHCP? Then the family can decide how to spend the money themselves, and could prioritise the transport.

Ames

FBaby wrote: »

Sorry, just realised that the money is used for the motability car. Any chance the carer be added to be able to drive the car? After all, it is for the benefit of the child so it would make sense it should be used by the carer on that day.

Given the cost of the taxi fare and length of journey time it sounds like the carer lives more than five miles away, which means they can't be added to a motability insurance.

keyser666

Ms_Chocaholic wrote: »

Are you saying your sister (or a family member) take your nephew to school each day and pick him up at the end of each day. I'm not quite sure why you do this and, if you do, the money saved on your petrol costs on the daily runs will help towards the taxi for the other day's respite.

Yes we do, this is because the transport provided cannot adequately respond if an issue arises due to the numerous complications of his condition.

Ames wrote: »

Given the cost of the taxi fare and length of journey time it sounds like the carer lives more than five miles away, which means they can't be added to a motability insurance.

:money: