Low amount of social services support

Dear Forum peeps, how would PIP interpret my situation?

Currently I get enhanced care and standard mobility. I was awarded mainly for depression and anxiety and hearing-loss. Since my award I've been diagnosed as autistic. Makes no material difference to my needs, I just have a better explanation for them. I also have since been diagnosed with hypermobile Ehlers-Danlos syndrome which means my mobility has tanked and I get tired easily.

I asked for a social services assessment last year and they royally messed up. A year of the complaints procedure and they upheld every aspect of my complaint and arranged a reassessment with a worker who knew more about autism. I am asking for help to go shopping, to appointments, organising appointments, some help finding some kind of social activity so i can connect with the local community even once a month as I'm very isolated, and some help keeping my house tidy as my executive functioning is appalling. I'm also now a fall risk, which is pertinent to the state of my house. All of which is covered by the Care Act. I've been assessed as needing 2 hours a week. So much for the Care Act looking at overall wellbeing... For contrast, my ex-partner, in a different authority, with a similar level of disability and who can drive himself to where he needs to go, gets about 10 hours a week to enable him to go to concerts and engage with local support meetings and medical appointments. I'm not asking for opinions on the postcode lottery of support (unless you want to - I know it affects people across the whole country and I am interested in hearing other people's experiences).

My concern is that being assessed for such a low rate of support in the postcode lottery of social services will put my PIP at risk. I think PIP will interpret it as me not needing the enhanced rate, because if I was 'properly' disabled I'd be assessed as needing a higher number of hours. I'm wondering if I would be able to employ the support worker myself for extra hours once social services have found a suitable agency. If I ditched social services (and their appalling financial assessment which I have been struggling for weeks to complete only to be told to go to my local library and ask for help with it!), would PIP look askance at that? Would I be better off just struggling on without such a low level of support if it's going to put my PIP at risk? Please help me straighten my thinking out on this!

I wish I'd not bothered approaching Social Services. It's caused me such distress but I do need whatever help I can get. I just don't want to risk losing my lifeline PIP (any more than we all are at risk of losing it in this terrible system).

Ok. Thank you. Yes, I would welcome others' experience if they want to share.

Hi Tracy - I'm Appointee for my adult son who has autism. In the past he used to get some help from a social worker, but since about five years ago this has completely changed. Social Services even wrote in a report that my son needs "no support" which is not true at all ! GP, who knows my son very well, wrote a report to Social Services saying my son needed a lot of support. I made a formal complaint to Social Services because social worker had written he didn't need support and my complaint was upheld. Social Services were supposed to do another assessment on my son but never did....social worker said they can only give "social care support" and that they can't give support for my son with his autistic problems which is what he needs. GP has referred my son to mental health services on several occasions but each time mental health refuse to see him because he has autism.

It appears to be a known problem, that people with autism fall into a gap...which is not the case in some local authorities but certainly is in Surrey. The only autistic adults who get support from Social Services are those with severe learning disabilities.

In all the reports I write for my son for PIP and WCA I stress the support my son needs because of his autism, I list all the support he needs from carers (me and dh are his carers) and that he's unable to get support from Social Services for the reasons they give, and that he's unable to get help from mental health services. GP writes report too.

This is all really stressful.

Hello Tracy and Anneb,

Thank you both for sharing your experiences on the forum - I can't help with any advice, I'm afraid, but your posts have reassured me that I am not alone in failing to find any support for my adult autistic son. In truth, we haven't sought any help from Social Services since he was a child, when he was referred by his paediatric consultant, because it was a waste of time (and quite a lot of time!) then and I've a feeling things might only have grown worse in the meantime. I was surprised at how much time they were willing to spend doing an assessment, only to say they had nothing to offer, as they must have known at the outset that their resources were limited. (However, this was over twenty years ago, so not exactly an up-to-date experience.) I'm afraid I don't know anybody with autism as their primary condition who receives any help from Social Services. All my son's help is provided by me, his father and his brother, but I do worry about what will happen to him when we are no longer around to provide that help, in the absence of any support from other agencies. He did receive a limited amount of support from NAS Cymru while he was at university in Wales, so you might try approaching the National Autistic Society, but even this seems to depend on where you live. Sorry not to be more helpful, but I really appreciate you taking the time to post about your experiences.

Best wishes,

Wendy

Hi Wendy,

The whole thing regarding support for autistic adults who do not have severe learning disabilities but who, nonetheless, have ongoing severe problems managing everyday life, is very worrying. When I and DH pass on there will be no one for my son to help him.

I've been investigating an Appointee bank account but that has thrown up an issue connected with that - that there will be no Appointee when I and DH pass on !

I have a mind now to make sure at some point that I will let UC, New Style ESA and PIP know that when I and DH pass on(both in our 70s now), son will be in an extremely vulnerable situation and will not be able to manage his life or his benefits.

bw's
Anne