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Booking rail assistance
  • dirtmother
    Posts: 897
    I'd like to know if others have experience of booking assistance for rail travel with PDA (or ASD) for someone travelling independently... what support you have requested and how successfully needs have been met.

    (This is going to be for regular journeys rather than a one off and it is the rail company who have suggested booking assistance)
  • Holly59
    Posts: 2,586

    dirtmother said:

    I'd like to know if others have experience of booking assistance for rail travel with PDA (or ASD) for someone travelling independently... what support you have requested and how successfully needs have been met.

    (This is going to be for regular journeys rather than a one off and it is the rail company who have suggested booking assistance)



    Hi,
    It depends on the individual child ,each ASD - PDA child is unique like a fingerprint , the staff on duty, time of day eg rush hour , there are all sorts of factors .

    Just a suggestion " Why don't you try a couple of trial runs and see how he copes " , that way you can discuss any issues that came up . I know by my two who are much older that journeys can be very very challenging . It's much easier for them if it's not rush hour , not too many unruly schoolchildren , most times the staff are spot on but we have had occasions where there has been no staff to assist them and they have had to " wing it " . It also depends on the size of the station .

    Unless you specify exactly the main issues ASD / extreme Demand Avoidance and that specific Stratagies must be used , will this information be passed down the chain ? What happens if the train eg breaks down between stations , would he cope alone , the staff on duty couldn't give you child 1 to 1care in a situation like that , could he use the loo without support different smells sounds , think of the worst scenario could he cope?

    Due to the erratic situation we have a present with liftshare with the youngest , plus the nightmare three hour taxi, bus and tram journey he has each way , it's horrendous due to the sleep issues at home , two hours is quite common , the limited diet , the pain in so many joints , potential dislocations , the list goes on and on plus a heavy musical instrument , College bag and laptop it's horrendous . We are now trying to get funding for a taxi from home to College and back since he is doing an undergraduate course through SASS funding . Funding does not depend on that you live in a rural backwater with a poor travel infrastructure , e.g. no buses leave the village until 08.30 and Finnish at 16.05 schooldays or there is no connections after a certain time from train to our house .The youngest told the assessor that his time management skills are non existent , how true .

    As you will have realised coping with uncertainty is a difficult stressful situation with a ASD -
    PDAer. I can see the difference in mine when he has liftshare than the wreck of a young man who has used public transport.Without his mobile phone and his friends he couldn't have done these journeys . My support is ongoing throughout the day . He sometimes uses the new Borders Railway for College with his College friend if Soutra Hill is bad or the snow gates are closed .

    Mine has his iPad and headphones and listens to his Classical Music which helps . Single seat may be so he does not have to chat to other passengers if he would find that difficult . That you might not be able to book the same seat all the time could that affect him .

    Would they fund a person to travel with him as a Carer ? There is no way as a parent I would let one of mine anywhere near a station without the assistance scheme . You also have the back up if anything does go wrong e.g. a train can't get past a particular station, e.g. a signal fault that your child is given priority service and not abandoned for hours while they try and make alternative arrangements .

    You also need a Plan B , what happens if he refuses to use the train for some reason , what works one day might not work the next .

    Mine starts full time on Monday , had a couple of induction days so far , he couldn't cope at this stage with Halls of Residence , that has been discussed at great length .

    Pat

    PS Webb the eldest made the journey we discussed , first time in three years . So proud of what he achieved with his friends . Might be another year but he did it .

    (*) (*) (*)

    Pxx
  • We have managed so far without tangling with the nightmare that is SEN travel (aside from him having a free off peak bus pass, the same as the OAP scheme) However, that's only so far...

    For most of the first year he'll have support from school to meet him at the station the other end and see him back on which should help (he's had lots of travel skills work through school, esp on the "what if's" but that's been buses). Done the journey with me a few times now but that's not been entirely helpful - doing the journey without the reason for the journey just rubs in the distance and the hassle for him, although it has flagged up some of the things he needs to be aware of, for real instead of just telling him.

    I see lots of (potential) positives in this particular journey (it gets busy but is less busy at the points where he gets on and off) - I have to as our nearest FE college have behaved disgracefully so he couldn't go there (they can't even deal with a formal complaint...)
  • Holly59
    Posts: 2,586

    dirtmother said:

    We have managed so far without tangling with the nightmare that is SEN travel (aside from him having a free off peak bus pass, the same as the OAP scheme) However, that's only so far...

    For most of the first year he'll have support from school to meet him at the station the other end and see him back on which should help (he's had lots of travel skills work through school, esp on the "what if's" but that's been buses). Done the journey with me a few times now but that's not been entirely helpful - doing the journey without the reason for the journey just rubs in the distance and the hassle for him, although it has flagged up some of the things he needs to be aware of, for real instead of just telling him.

    I see lots of (potential) positives in this particular journey (it gets busy but is less busy at the points where he gets on and off) - I have to as our nearest FE college have behaved disgracefully so he couldn't go there (they can't even deal with a formal complaint...)



    Hi,
    Another issue we have is the Edinburgh Tram System you can't use your disabled travel pass on that unless you live in Edinburgh . It's so unfair . He once forgot to swipe his phone at the machine and ticket inspector put him off the tram at the next stop to zap his phone and refused to allow him back on that tram as punishment so he wouldn't do it again .

    Fortunatly he is a tall young man with a large distinctive musical instrument case so they could see what had happened on the CCTV system when I bitterly complained . They have reviewed their staff training since .

    There are some right clueless people in this world . Each child is unique . Getting them out the front door is exhausting enough .

    I am so lucky with the team of Tutors I have at Edinburgh College , they wanted to learn about ASD -PDA , they have a number of Aspergers Students but as we all know the Stratagies are completely different .

    I would certainly try for funding for Carer on train journey or funding to College by taxi . You know your own child's limitations and the ASD-PDA issues and how it affects him . Too many demands up front , the anxiety of a new environment , the new journey , new Tutors , new friends , extreme Demand Avoidance .

    I had to get from a retail outlet to Edinburgh College the other day . Friend said " you can't possibly get lost " . Laughs . With my dyslexia and other issues it was a nightmare . I was advised of the wrong bus number but fortunatly an absolute treasure of a bus driver helped me , made sure I was off at the correct stop and made all the other passengers waited till I was safely off the bus .

    Pat


  • Haha yes. I had promised mine a visit to a particular restaurant chain of his choice after enrolment and enrolment was a less positive experience than anticipated (fortunately don't need to deal with those people or places again) so definitely needed to do it. Took us ages to find it. No need for me to *act* helpless as a strategy to gain his cooperation!

    Taxi is Plan B. It's a really foul car journey. But if that's what it takes to enable him to access education...

    We've been very fortunate with our local bus company. They use small teams of drivers for the same route. Glad you complained about the tram experience. Not acceptable even without additional needs.

    Amen to getting out of the front door being enough of a challenge!
  • Holly59
    Posts: 2,586

    dirtmother said:

    Haha yes. I had promised mine a visit to a particular restaurant chain of his choice after enrolment and enrolment was a less positive experience than anticipated (fortunately don't need to deal with those people or places again) so definitely needed to do it. Took us ages to find it. No need for me to *act* helpless as a strategy to gain his cooperation!

    Taxi is Plan B. It's a really foul car journey. But if that's what it takes to enable him to access education...

    We've been very fortunate with our local bus company. They use small teams of drivers for the same route. Glad you complained about the tram experience. Not acceptable even without additional needs.

    Amen to getting out of the front door being enough of a challenge!



    Hi,
    We have lovely taxi drivers , amazing service from one in particular .

    One also had the added issues on the train of standing in queues , all the sensory issues , tannoy , balance co ordination .

    You need to get him to College relaxed and calm . If he is totally " mentally exhausted " and anxiety is full on it does not bode well for a calm learning environment . Then we have " masking " , oh he is fine at School/ College , the issues at home after a poor experience through the day .

    Jolly steep learning curve !

    I dread those words " What's ASD - PDA never have heard of it before " . The time you explain the issues and then add the co Morbid .Then someone states " can't he do that by himself " , " that will put him at an advantage to other students is another " . " College promotes individual learning " . Try that with ASD - PDA . Sighs .

    Hope our experiences have helped you . If you have a good student support team in place that's half the battle .

    Pat


  • My ASD, dyslexic, dyspraxia oldest daughter attends university 100 miles from home. The only way she is able to continue her studies so far from home is because of the assisted travel offered by the rail companies. This was a service suggested to us by the rail company after my daughter ended up stranded in a train station, 100 miles from home having a huge panic attack. She phoned my during the episode to get help then passed the phone to the attendant. I explained the situation to him. He stayed with my daughter, put her back on the train to return to her uni station so I could have her met. My daughter buys her ticket on line for the train she wants to travel on then I telephone the rail company and arrange the assisted travel. If you agree to share the information then different rail companies can pass information to each other. This is important as sometimes the journey uses different providers therefore ensuring that each company picks up where the other leaves off. In the last 6 months we have only had one problem and that came about due to the lack of understanding to hidden disabilities. When I telephoned the rail company following the incident they were very keen to ensure all staff were trained accordingly. This is an excellent service than has been a godsend to us.
  • Holly59
    Posts: 2,586
    Hi,

    Welcome to the Forum Timeakin ,

    I have also had a situation where the youngest forgot his disabled rail card , he left it on his computer desk , I was dealing with the other having a seizure when the taxi arrived . It's never boring in our house that's for sure !

    The train inspector charged him the full price journey , fortunatly he had enough money in his bank account to pay . Even a photo on his iPad was rejected , you must have it on you .


    The eldest has just made a long journey through Virgin Trains , staff were lovely most helpful but it was very hit and miss if they asked to see the card .

    I rang up and explained the situation but got no help whatsoever , I could not get through to the Station direct only call centres . Wrote a blunt letter to Virgin and received a £50 voucher and an apology , not our usual customer service cut and paste response .

    I posted recorded delivery the railcard down to him and not one inspector asked to see it on the way home .

    I agree these services are a Godsend , mine couldn't cope with independent living in Halls of Residence even with one to one Support at this stage , it's the PDA part of the ASD - PDA which causes major issues .

    When something like that happens it's a learning curve for next time . It's the sheer Demand Avoidance of asking them to do something , the normal answer , " I will do it shortly " , as most of us confirm that means not a cat in hells chance .

    Why Ticket Inspectors can't access a data base of Disabled Rail Cards beggars belief , it must be possible .

    I am pleased you have had positive experience of assisted travel .

    Pat

  • Mislaying the rail card is one of my concerns too.

    Was that journey where your son was charged for not having it one where assistance was booked?
  • Holly59
    Posts: 2,586

    dirtmother said:

    Mislaying the rail card is one of my concerns too.

    Was that journey where your son was charged for not having it one where assistance was booked?



    Hi,
    Yes !

    He had a diagnosis of Aspergers at that stage .

    This particular guy was most unhelpful . Staff training needs to be consistent . We all have our off days .

    It states in the small print you must have the actual Railcard with you for the Ticket Inspector to view .

    We had another incident last week where his disabled bus pass didn't work and he was charged £7.40 full adult fare to Edinburgh . Driver told son it had be " Red flagged by the Council " .

    Found out later there are two alternatives . One is to issue a 7 day emergency ticket , no Carer attachment , and remove the card . Two is to pay the full fare and let the customer keep the card .

    He tried the card on the return journey , still didn't work so a replacement was ordered . Again it's the worry and stress . Driver could have handled it better . The teatime driver was lovely . Suggested to bus company a wee bit of staff training . The bus ticket had to be sent to Berwick to be forwarded to Glasgow for reimbursement which we have received promptly .

    May be a question to ask in advance to the train company if this is a possibility?

    May be it's just us , if it can go wrong it does !!!!!!!

    Pat

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