Counil Disability Services Compared

Nazely

Hi Everyone,

I would like some insights into your experiences with disability support in your region.

I have ataxic/spastic cerebral palsy and moved to Wales from Reading because I was led to believe that disability support was much better there. I sold my flat, and moved in with my mother while I looked for a place locally. I had also contacted an occupational therapist who I had hoped would be able to advise me about a suitable living situation - supported living, retirement home, or help in my own home. However, the OT was too overworked to support me (in fact, she ghosted me, as did 3 other OT's I contacted afterwards!) I think it was because I had also mentioned that I was thinking about buying a place in Swansea or Cardiff, which were out of their area, despite the fact that I would have been paying them privately!

I attended the CP Conference in Glasgow, where I knew there were some really good disability user led organisations, and also that the service charges were much lower. When I enquired about disability support there, they were very unhelpful, and told me I should speak with CP Wales. This I did, but they actually only help children! I gathered that I need to seek support from the pleace I live in.

So I contacted social services in Carmarthenshire, and was seen, firstly by an occupational therapist, then a physio, then a social worker. The social worker saw me with my mother, and was unable to assess me because of the support I was receiving from my mum. Additionally, because I had funds from the sale of my flat, I would not qualify for housing, shared lives or supported living - I had to find somewhere first, and then the support would kick in. I felt distinctly uncomfortable with this as I really struggle living on my own owing to fatigue, poor organisation skills and would be heavily reliant on take-aways. So I sought an advocate, who told me that there isn't really any support for physically disabled adults in the area - I had a look myself, and there didn't seem to be anything in Wales at all!

I did see several supported living organisations in England, particularly in Leeds and Sheffield. I am also very interested in 5rhythms dancing, and there are places there that I could go to dance there. However, I'm exhausted by the process, and feel only able to look in the town I'm currently in. However, there are no flats here, and the houses are old, stone built, and prone to damp. The good side is that there is a very strong sense of community here.

Sooner or later I feel I will want to move to a larger town, but I want assurances that the support that appears to be there would be available to me. I had also considered Manchester, but I was told that so many people call on their services that people have to wait a long time to be seen! I wondered what your experiences of different councils are - perhaps Sheffield and Leeds are not the best…? I just want to steer clear of the South East of England. My advocate also told me that I only need a permanent address to get the council's support - I wouldn't need to have lived there for x number of years - is that correct?

Rachel_Scope

Hi @Nazely. I don't have experience of this but I'm just going to tag our lovely CP Network team who can hopefully help. @Richard_Scope @Lucy_Scope @SaraC_Scope

SaraC_Scope

Hi @Nazely I understand your frustration. Connecting with the right organisations can be a challenge, especially when cerebral palsy is such a unique condition.

I'm wondering if this question could be a topic at our Welsh CP Network meeting on Tuesday 20 January. Some of the attendees might have had similar experiences.

I am aware of an organisation called the Disability Advice Project that offer support and advice to people with cerebral palsy. Maybe that's an area to explore.

DAP WALES

Best wishes.

Nazely

Thanks Sara,

I'm not ssure if they'd be able to tell me any more than I know already from my extensive searches over the past 5 years.

Following my meeting with the socia; worker I spoke with an Age Cymru advocate who I told about my experience of having a disability - how I had spent my early adult life denying I had a disability, but that it had been a real strain, and now I wanted more support. He felt that I needed to be in supported living, and put me in touch with someone at Carmarthenshire Connects. The organisation she suggested only dealt with people with mental health, acquired brain injuries etc, but not physical disabilities! I had a look for myself at possible providers in other parts of Wales, and found the same story - physically disabled people were excluded! I did find, however, there were numerous in England and Scotland.

The process has put a real strain on my mother too, who has a limited appreciation of my wish to be better supported, and being near to her I think could be very difficult - another reason I want to move away …