Professionals offer advice on a case in which a woman with learning disabilities can no longer afford her choice of carers
Sybil*, 67, lives alone in a housing association flat. She has mild learning disabilities and her usual manner is often mistakenly perceived as being rude and aggressive. She also has arthritis.
The day centre that she attended for over 30 years closed six months ago under the personalisation agenda.
Sybil was supported to try alternative social groups run by the voluntary sector. She did not feel happy with any of them.
Until two months ago, Sybil was supported to live independently by local authority home carers. Sybil felt proud of her independent living skills and close to many of her carers.
She was then re-assessed using a resource allocation system. Her personal budget was too low for her to be able to afford the local authority home carers.
Sybil did not want direct payments, and reluctantly chose care from an independent domiciliary agency.
Sybil feels lonely, depressed and rejected. She has limited contact with people who know and care about her.
Sybil misses the routine of the day centre and the care from her old home helps. She has put on a lot of weight and lost the motivation to wash and dress each day.
Her new carers frequently complain about her behaviour and the agency is threatening to withdraw their services.
Sybil has refused to pay her financial contribution towards her home care. Consequently, her social worker has been instructed to reduce her care package to the minimum necessary to meet their duty of care.
*Name has been changed
THE PRACTITIONER VIEW
Carl O’Riordan, social worker, Derbyshire Council
The personalisation agenda has enabled disabled people to smash some of the oppressive barriers that prevent their access to mainstream services.
Consequently, many people’s expectations exceed the meagre choices available within some traditional day centres. These centres are often perceived as insipid and expensive ghettos.
However, barriers to integration remain and many people, such as Sybil, desperately miss segregated day services. They provided friendship and community; sanctuary from prejudice and ignorance.
Sybil has lost the people and routines that she most values. She is in a self-destructive spiral, risking her health and independence.
Her new home carers do not understand her behaviour and their services are not meeting her needs. I would argue that Sybil’s local authority is not fulfilling its duty of care: a responsibility that cannot be fettered following her comprehensible refusal to contribute towards the cost of her services.
I would strive to support Sybil to redesign the support that she receives, together with an advocate, ideally from a user-led organisation. Despite increasing budgetary pressures, I would try to negotiate an increase in her personal budget, even if only temporarily. This may enable Sybil to regain some support from her local authority home carers. Hopefully, Sybil would then feel happier and more motivated to care for herself.
Sybil’s agency home carers may learn from the council workers how to respectfully work with her. In time, Sybil may also benefit from direct payments, enabling her to choose all the people who support her.
I would also strive to assist Sybil to find social activities with friends from her old day centre. With time and imagination, it may be possible for her to share transport and personal assistants, to find truly fulfilling activities and enjoy life with old friends.
THE MANAGER VIEW
Bev Capel, adult disability service manager, Derbyshire Council
raditional separatist day services are becoming a thing of the past. The disabled people’s movement has fought long and hard for inclusion in local communities and access to mainstream social activities, in accordance with the social model of disability.
However, while the personalisation agenda is steaming ahead, there is a long way to go before some service users agree that they now have greater choice and control about how their support is planned and delivered.
Pulling out of day care services has enabled local authorities to invest in alternatives, such as direct payments, that provide far greater flexibility for social activities.
Moreover, personal budgets should enable people to develop support plans that are truly tailored to each individual. However, Sybil doesn’t see it that way. She misses the traditional home care and day service that formed the hub of her daily living routines for many years.
Ironically, Sybil has become entrenched in a service model that was probably thrust upon her.
She inevitably had little choice about how her care was provided or how she spent her social time. She has now been given an opportunity to take the reins, yet she feels unable to exercise her choices as she just wanted to keep things as they were.
It is clear that Sybil needs more support to mange this transition so she can re-explore her desired outcomes. An advocate may enable her to feel better supported and heard. Maybe, with a bit of help, she can rekindle some of the lost friendships from the old day centre.
Sybil could explore extra care housing, where she could maintain her independence in a safe and secure environment and develop new friendships, enjoying social activities that may be similar to what she is used to.
THE USER VIEW
Nick Danagher, disability equality consultant
No local authority can afford a resource allocation system (RAS) that causes packages that are working well to break down.
The clue is in the name – a “personal” budget needs to be set at a level that enables that individual to achieve outcomes personal to them.
If the RAS has produced a figure that prevents Sybil from using her independent living skills, then that needs reviewing.
Like most disabled people who live independently, Sybil should benefit from continuity of staff who can get to know her and accept her for who she is.
For Sybil to feel confident enough to choose direct payments, she needs to explore this option on a peer support basis so that she can learn from other disabled people what direct payments can really do.
A user-led organisation could provide Sybil with an individual budgets support service (IBSS) to facilitate her self-assessment and produce a support plan based on her desired outcomes.
Access to peer support groups may lead to Sybil being able to pool her personal budget with other users for activities that will rebuild social networks.
An effective IBSS would arrange brokerage and advocacy for Sybil to present her case to the local authority, challenging the resource allocation and the fact that the ongoing level of support provided to a service user should be kept entirely separate to the issue of recouping unpaid charges for services.
If all this can be achieved then things should start to look very different for Sybil.
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