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Hi I'm new here and still trying to find my way around the s - Carers UK Forum

Hi I'm new here and still trying to find my way around the s

Tell us a bit about yourself here.
Hi. My name is Harry I'm 79 years of age and my wife is 76. We both suffer with quite severe arthritis, but we still care full time for our severely disabled Daughter Julie who also has learning difficulties.
Until may of this year my daughter received Direct Payments which we used to pay for three days at the local Social Services day care centre and two days at a college for people with learning difficulties. Our problems began approx two years ago when the local taxi service told us they could no longer transport my daughter to these centres, as my daughter required a wheelchair accessible vehicle, so I had to then transport my daughter the 200 miles per week.
However this winter proved a little too much for both my wife and I resulting in a great deal of stress. At this point we asked Social Services for help in a morning, requesting a carer for two hours per weekday. The Practitioner 'Unqualified' who comes to see my daughter told us that "due to the severity of Julies condition two carers would be required, but funding is not available" The Practitioner then went on to say she would agree to one carer for one hour on two days a week. We told that this was unacceptable as we could not carry on getting my daughter dressed and prepared in time for the day centre's plus the 200 miles travelling and that Direct Payments were not working for us.
Since we stopped the Direct Payments life has become much better for all three of us, but now Direct payments are telling us we must repay some of the monies approx £1,000 we spent on Julies Social Inclusion, as an example for many years we have used Direct Payment to pay for a Premier Inn so my Daughter could visit her younger brother. Julies younger brother has a large house, but is totally unsuitable for someone who is severely disabled whereas we find we can manage in a family room at the Premier Inn. There are a couple of other instances where we have taken my daughter to such as a Zoo, Duxford Airshow and RAF Wadington Airshow, in the past these expenses have been acceptable, but now Direct Payments say payments for these outing must be repaid. Unfortunately we just have our retirement pension and my daughters benefits. If we repay this £1,000 this will severely restrict my daughters social inclusion, as we would not be able to take her on any outings to her favourite places .
Sorry for the long post. On the recommendation of the CAB I've been trying to phone the Help Line, but continually just get the recordings.
Hello Harry,

And welcome to the Forum, a great place for support and advice. Others will be along shortly to welcome you.

I am certainly no expert in the issues you face (I care for my mum with dementia) and would suggest that you email the Advice Line, advice@carersuk.org. They may not respond immediately due to the volume of calls / emails but they will get back to you.

Looking forward to "chatting" with you,
Welcome to the forum. I have a 35 year old son with SLD, I handle his direct payments too. I would write to Social Services, making a formal complaint. When it became apparent that your daughter needed a wheelchair suitable vehicle, there had clearly been a change in circumstances. They should have done an up to date needs assessment and then funded what she needed. There are some services which an LA has a duty to provide, lack of funding is no excuse. When did you and your wife last have a Carers Assessment? This should have been done when your daughter's assessment was reviewed. I suspect neither happened! Have you ever seen any written assessments for any of you?
Hi, and welcome. Mrs Scally and I are both in our 60's and care for our son with Downs, with the help of a direct payment.
Bowling Bun, as usual - hits it on the spot.
I would complain to your councillor, and threaten to go to the local paper. That usually does the trick. As long as you acted in good faith, they have no right to ask for the money back: it was their fault for not being more specific. I have bought air flights to New Zealand twice for my son and an unpaid supporter, using direct payments, so he can spend time with his sister and nephew and give them all quality time together. Its still a lot cheaper than using social services or private agency residential respite pwe week: and there is no point having a direct payment if you can't spend it sensibly on obtaining best value for money. Tell that to your social worker!!
By the way, have you made plans for the future?
Thanks to Anne001, bowlingbum & Scally for your comments.
Bowlingbum, yes my daughter has a review every 12 months, but this is done by a 'Practitioner Unqualified' who's only concern is with my daughters Direct Payment, although she did suggest trying a different taxi firm for transport, unfortunately the taxi firm she suggested was an hour's drive away, as I'm very conscious of spending this money I didn't even consider contacting them. As for Social Workers, what are they? my daughter has not seen one in many, many years.
Scally. Now you've really upset me, earlier this year I asked Social Services If I could use £1000 of my daughters money to help pay for an holiday in Australia so as to visit my wife's sister who is seriously ill and all of her family. Due to an airline pilot friend we could get concessionary fares to Oz flying business class. The first question Social Services asked was, Is your daughter up to travelling such a long way?. Rather stupid question as my daughter can only sit or lie down and has done the journey in the past albeit with her parents funding the total cost. When we told S.S. this would not be a problem they just refused our request.
We have asked many times in the past if we could use some of the payment to take Julie on holiday, but this has always been refused. As we have not been allowed to use this money we have not had an holiday for the over 8 years. My daughter would be heartbroken if we went away without her. Social Services have told us there would be no problem for Julie to go on holiday with a carer and even suggested certain holidays some of which were costing in the region of £4500 for 5 days. This was totally unacceptable to both my wife and I and Julie.
Just a word on respite care as I mentioned my daughter would be heartbroken if we went away without her but on checking out the cost of respite we were told that due to the severity of my daughter disability the cost would be £250 per night. When I informed S.S that we were considering putting my daughter into respite and the cost would be approx £8.000 for a month, they totally ignored us.
I don't know which authority you come under, but I'm pretty certain they aren't applying the rules properly. If it was recognised that your daughter needed a different taxi, then the DP should have been increased to cover this accordingly. Have you ever made a "Subject Access Request" to your local authority? They are obliged under the Data Protection Act to send you details of all records concerning you, held electronically on their files, within 40 working days. I made an application, it was a revelation - much of it was pure fiction. I suggest you do the same, and see if their files are accurate to start with. Scally has taught me loads about DP's, M and I have had two holidays this year using DP's.
Hi Harry,

Welcome to the forum.

Your situation sounds really complicated and stressful - I'm sorry you haven't been able to get through to the Carers UK Adviceline yet. Unfortunately we are in a position where we receive more calls than we're able to answer.

I would echo what Anne001 says and suggest you email the team at advice@carersuk.org as soon as you can. That way your query is in the system and the team will get back to you as quickly as they can. You could copy and paste the information from your forum post so you don't have to type it all out again.

Once you've sent the email you could still try to get in touch over the phone - the Adviceline is open Monday to Friday, 10am to 4pm - so anytime within these hours it's worth trying to get through if you're able to.

Do keep in touch with us through this thread and let us know how you get on.

All the best,

Many thanks for all the info, will certainly contact my local authority re. "Subject Access Request"

Kate yes I will do as you suggest and email the team advice@carersuk.org. In fact I will do it as soon as I log off.

Regards Harry
Hi Harry,

I've checked with the team and they have received your email and will get back to you as soon as they can.

All the best,

Many thanks Kate, I've tried phoning numerous times, but without any luck. Will keep trying to get through on the phone.