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Beware Autistic societies new welfare officer. - Carers UK Forum

Beware Autistic societies new welfare officer.

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I recently had a charge drop on my mat from the local authority asking my daughter of 24 with severe autism to pay £25.99 per week towards her services it was on the back of what i considered a ridiculously unfair assessment of income and expenditure. done i hasten to add a year ago. In this assessment they were allowing £2.50 a week for clothing and £2.50 per week for any social activities refusing to include glasses we have to pay for and gas/electric that is just a brief example of how the assessment read. As my daughter lives at home she only receives Incapacity allowance for her keep. I rang MENCAP for advice on challenging this assessment a man came out to see me at home he said i think you will have to pay it. I rang the National Autistic society for advice they told me they had just employed a welfare officer for this very purpose as they were getting a lot of calls like mine. I waited a week for the telephone interview with this welfare officer when she rang i told her the story how it was by any bodies standards a very unfair assessment and all she could bleat was " well the local authority are at liberty to charge i think you will have to pay it" I told her she was as good as useless and hung up. Thank goodness some one told me about SHELTER they dont only deal with homeless people but have a welfare officer that knew about social service law. When i rang her she told me not to pay it was illegal for the local authority to stop any service she told me to make a complaint she came to the meeting we had with the head of finance and the complaints officer from our local authority the out come was Nil contribution for my daughters service. She also printed off for me a page from the chronically sick and disabled persons act which states the local authority have a duty to provide our daughter with a television radio anything in-fact she needs for her leisure time.
Had i listened to either MENCAP or the National Autistic Society we would be struggling to pay for services my daughter should not be paying for.
It never fails to amaze me how many legal rights LAs ignore. We had to tackle our LA over payments for our sons services. Apparently because he is on higher rate DLA and doesnt receive nightcare from LA that should have been deducted. No one from the LA (apparently) knew this and we had a rebate for 3 years of payments
My son has to hand over £155 a week for his respite care. It is only Pembrokeshire that charge such a high rate,and then they wonder why parents are not wanting respite!And for weekly day care charges, he is supposed to give up £38 for two days service a week!This is for ILF, and though I appealed, they said they could do nothing about it.
hello Lazydaisy,

These Local authorities are getting away with murder. Has your son had a a full fair and transparent assessment of all that you spend on him and i mean everything. If you cant afford it don't pay. The local authority told me in the first instance i could not do anything about it. You need advice and dont be afraid to challenge this ridiculous abuse of power it is illegal for them to stop a service. if there is a Shelter near you ask if they have a welfare officer and speak to them but if your son has not had a full and fair assessment ask for your local Authorities complaints procedure and take it as far as you can if you get to level 3 of a complaint it goes to and independent panel and if you are still not satisfied take up a level and it goes to the ombudsman he has far ranging powers to order the council to refund if necessary any money you have paid so far. It is my bet the local authority wont want it to go that far. You have nothing to loose it wont cost anything but for goodness sake challenge it.
Iv'e never found the NAS to be any use at all, they have never told me anything I don't know already.
I have only ever phoned them for education advice, usually results in me calling IPSEA instead.
Their campaigns have had no impact whatsoever locally and anytime I have asked about things such as I Exist no one knows what I'm talking about.
My boys are 14 and 11yrs old many times we have needed an organization that could advocate for them, this obviously isn't the role of the NAS, still scratching my head 10 yrs down the road as to what they do at ground level.
Maybe more 10yr plans that we all give up and forget about.
I have to agree with you Vicky.
My son was let down by the NAS last year. He attended a day service and we had to remove him because he was "too challenging" They just left us totally in the lurch with no care for him. We complained to the cheif executive and mentioned the 'I Exist' campaign and the sheer hypocrisy of the NAS. We recieved a standard letter reply which referred to another young man, not my son. I have no faith in them whatsoever.
While I can understand people's concerns about another organisation - in this case the National Autistic Society - I do feel that any such concerns need to be taken up with that organisation wherever possible, in the same way that I would hope that if anyone has any concerns about CUK they would take those concerns up directly with CUK.

Poor quality service is unacceptable and needs to be addressed - but it can be difficult for people "at the top" to know things are broken, especially in larger organisations. It's as important to tell a charity where it's going wrong as it is to tell your social services department.
I have e mailed the NAS 3 times to three different departments with my complaint. To-date no reply not even an acknowledgment. I have found along the years most big charitable organizations want your money to pay their wages but do precious little for it at grass roots.
The Downs Association is another one that to my mind has been totally useless to me and my family anyway.
Snap, Linda, with the Downs Association. They helped me once, and I have contacted them several times again since, with no success. their financial advisor had no idea what Independent Living Funds were all about and whether my son could have any help to appeal against a decision that was made by the ILF.

I also tried to get some support when my son was sexually assaulted in social services respite care, and there was no help forthcoming. My family had support eventually through a local advocacy service.

Same with Diabetes UK. We have even cancelled our membership with both of these now. They have NO advice on caring for a person with a learning disability plus insulin dependent diabetes,which is appalling. The only place I could get helpful advice was online, through a New Zealand Charity!(Mind you, it is an excellent site, and our learning Disability nurse now uses it too, to access info for my son).
Hi Charles,
I actually thought complaining to the Chief Executive was as high as I could go. My MP took up my complaint for me but nothing came of it.