Share Your Experience With Autism Care UK Please

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I'm 40 years old. I was diagnosed as Aspergers a couple of years ago.

The GP could offer no practical help at all, so my family and I sought private support.

Our area is very poorly served by AS and mental health organisations. We eventually came across:
autismcareuk . com

We made contact and a representative came out, spoke to us, and then came back, talked to me for about an hour and filed a report. She told us she felt we qualified for Autism Care UK services and to take this report to Social Services, in an attempt to get funding. She made no further follow-ups with us, despite promises of "being there for me now", "having my back" etc. All further contact has been at our instigation.

We had made it clear that we are sufficiently comfortable to be able to pay privately and asked what their organisation could offer, on that basis. No answer was forthcoming, other than we can discuss specifics when Social Services funds are involved.

The report interview was in March. It is now August. We are still waiting for Social Services to begin any action on our case. Personally, as I am superficially high-functioning I anticipate no help from that quarter, that I will not be deemed needy enough. Specifically, we are seeking some form of supported living, to allow me to have some sort of autonomous functional life after my parents are no longer around to help. We have no other family to take me on and no outside support.

In the meantime, Autism Care UK have offered us no precise information about their services. We have been given no leaflets, nothing at all, to show us what they as an organisation can specifically do for people on autism spectrum. So, whether private or state funded we don't actually know what we could spend our money on. Their website refers broadly to specialist accommodation they run, also to therapy services and outreach in-home support. All of which sounds potentially useful, but the website simply does not go into firm detail and our case worker could not or would not provide details of potential services that might suit me.

Their website refers to several accommodation bases, which vary in the level of support and supervision they apparently offer residents. Yet my ACUK contact spoke only about a premises close to our home. She made no reference to this apparent variety of care approaches, let alone discussing which level of care might be suitable for me. She also was quite insistent about any fees being paid by Social Services, even though I made it very clear we would be far more comfortable with the freedom paying privately would give us. She could not give me a straight answer when I asked her how many, if any, of the home's residents were there as self-funding cases.

We have approached the case worker who made the report for ACUK, saying we would like to access their support services (particularly psychology) whilst Social Services do their thing, paying privately. We were, essentially, fobbed off.

The organisation appears to be a business, they expect paying. We have been asking since March what they can offer us, without any useful answer. That is 5 months of potential business they could have had off of us, but we keep being told to come back when we have Social Services funding in place. In the meantime we cannot even obtain any specific literature on ACUK services, to help us decide if any money we have might be best spent with their organisation.

My main questions are this:
Have any of you had dealings with this Autism Care UK organisation and did you have similar or better outcomes?

ACUK seem reluctant to deal with us without Social Services funding in place. Where do a family with private means, who would prefer not to rely on SS, turn to obtain hands-on services to allow their family member to have their own home with specialist support from an organisation who would understand the difficulties I may have with day-to-day life, financial and property management etc and put a plan in place to support that?

We want this sorted out before my parents are too old and frail to give practical help in moving me into new accommodation, but we are hitting dead ends at every turn.

Autism Care UK is the only organisation that seems remotely useful, in our local area, so we are very much concerned about their lack of positive action and do not know where to turn next, for the best outcome.

hi and welcome to the forum elend.
the national autistic society runs a database of all services available for ASDs,its available here;
http://www.autism.org.uk/directory.aspx
may be able to find another one.

as for needing social services input,for supported living and any other of their supportive services they will want a community assessment of needs to have been carried out, so woud recommend contacting the SS [a suitable name for them sometimes ] and ask for a community assessment,are legaly entitled to one.
a community care assessment will find out what level of care will need and what will be entitled to if any.

Thanks, I appreciate the response.

We're already in the system with SS, I'm more concerned about Autism Care UK and their failure to be willing to set up personally funded services whilst we wait on the SS. I'm hoping to find other ACUK clients, who may have successfully bought services, to hopefully gain some info from their experience.

The other main hope in posting is to find services that do not insist on having SS funding in place, as we do not particularly need nor want it.

With or without SS funding, we're struggling to find anywhere at all in our region that offers anything. We're too far outside the main zones to fall under most catchment areas.