Meet Sandra

Sandra O’Donovan is originally from Donegal and moved to Liverpool in 2001. At first Sandra had planned to stay to do a one year course in college, however during that year she applied to do a Performing Arts degree for the following year.

Moving to England

In 2005 she moved from Liverpool to Leeds where she currently lives and works. Sandra had to ‘learn’ what people living with a disability are entitled to in the UK and also not to be afraid to ask for her needs. She found that as she already had Personal Assistants, Direct Payments was considered the ‘normal way of doing things’ in England. Sandra prefers to choose and train her own PAs, so Direct Payments was the logical choice and the most similar ‘to just running your own PA service’.

Making the right decision

In England her first contact was with a Social Worker who met with her to decide on her care package. There are many care packages but she chose the Direct Payments route. Sandra found this experience a very positive one as she was given a choice of how her  PA service was to be organised. She found this came from the government’s attitude towards people with a disability. It would appear in the UK that ‘…there is more of a legal responsibility to disabled people…. you are legally entitled to a package of care so they have to take responsibility for you.’

Support services

Sandra receives the support of ASIST (Actively Seeking Independence Support Team), a support team that provides practical materials and advice, such as time sheets, contracts, health and safety advice and training. ‘At the start I needed them a lot and now I just do my paperwork myself and send it to my accountant.’

Importance of Peer support

What struck Sandra was the lack of available peer support networks.

Sandra feels that as there is an ‘entitlement to services’ the fighting as a group has been done, ‘so I
think that is why there hasn’t been that much support set up to guide each other’. She is actively involved in a local peer support group (Free to Live Leeds) and has been a member of various local committees. This peer support group was jointly set up by Leeds CIL and the Leeds City Council.

They meet regularly dividing their meetings in half; the first half to work on local matters and the second to discuss personal issues that they require advice on. For some of the members this second half of the meetings is invaluable as ‘… you might have to fight individually for your type of care package’ and need advice on how to go about that. She herself learned of her entitlements to various equipment by talking to her peers in the group.

Peer support was important ‘to advise or talk to about managing your PAs’ and to help make social workers and professionals aware of how serious it is when there are no supports available to an individual. ‘Social workers don’t actually know how to do it because they never have to do it and advisers can give advice but at the same time they still don’t have to do it’, so peer support gives the guidance that professionals just cannot provide.

Sandra O Donavan in conversation with Aisling Jones

Free to Live Leeds website can be visited at: http://www.freetoliveleeds.org/