Disabled people's experiences of social care - Executive summary

This is an accesible executive summary of the report 'Disabled people's experience's of social care'

Key findings

Met and unmet support needs

Experiences of support services

Flexible support

Choice and control

Relationships with care planning staff 

Joined up support

Future expectations of care and support services


Scope carried out research into disabled people’s experiences as social care users in England as part of a Disability Partnership with the National Autistic Society, Mencap and Sense. This collaboration is part of the Health and Social Care Voluntary Sector Strategic Partnership Programme, funded by the Department of Health, NHS England and Public Health England. 

While many recent social care research projects have focused on older people’s services and experiences as care users, this report shares findings on the views of disabled people aged 18 to 64 who are using social care services in non-residential settings. 

Scope’s research paints a detailed picture of disabled people’s recent experiences with the social care system. It offers new insights into the state of care for working age disabled people. This is a crucial turning point with the new Care Act introduced on 1 April 2015 and debate ongoing about how best to support the role of health and social care services.

We asked disabled people how far services support them to live, work and participate in their communities. We also asked how services can become better at supporting disabled people to live independently in their communities.

The research focused on disabled people’s experiences with and views of the care planning process. We asked disabled people about the impact of assessments and reviews of their support on their ability to live independently and achieve the outcomes that are important to them. 

Key findings

Just 18 per cent of social care users say services consistently support them to live as independently as possible. 55 per cent say social care never supports their independence. 

Support is central to the way most disabled people define what independence means to them, and how choice and self-determination are achieved. Many disabled social care users see support as necessary in order to achieve the things that are important to them, fulfil their roles as parents, daughters, sons and friends, and be part of social and economic life.

27 per cent feel services consistently support their day to day living needs, with 38 per cent saying this never happens.

Met and unmet support needs

Day to day living needs are more likely to be met through support services than needs around independent living. Support to live as independently as possible also appears to build on support for more basic needs. Social care users whose services always meet their day to day living needs are 11 times more likely to say they are also supported to live as independently as possible, compared to social care users who say their needs are only sometimes or never supported. 

Some disabled social care users feel excluded from or not accepted by society. Most social care users want and expect to work, volunteer, be part of their local communities, fulfil caring responsibilities and be active in their society. Some social care users feel constrained in their ability to do this, emphasising the important role of care and support services in enabling active citizenship and independent living.

52 per cent of social care users want more help to be active in their communities, while 30 per cent receive help towards this from social care services. 

27 per cent of social care users need more support in their roles as informal carers, compared to 5 per cent who get this help now.

79 per cent of social care users say services are important for enabling them to work, seek work, volunteer and study. 

More than half of social care users under 35 want help with working or looking for work, but only 15 per cent are currently getting support with working and only 13 per cent are getting support looking for work.

Disabled social care users emphasise the importance of formal support to complete daily living tasks and live independently, and the value of formal support as an alternative to support from parents, other family and friends. This is particularly important for younger social care users.

Experiences of support services

36 per cent of disabled social care users say support has become worse since 2010. 19 per cent say support has improved.

29 per cent of social care users say their hours of support have been cut, while 24 per cent say their hours have been increased. 

83 per cent of those whose hours of support have been cut say they now do not get enough support through their care package.

Social care users who feel that services have become less effective at supporting them since 2010 are most likely to mention reductions in the hours and scope of their care packages when asked why. Those whose hours of support have been reduced since 2010 are more likely to have negative views of how social care supports them overall, and are more likely to lack support for day to day living needs and for living independently. 

Social care users whose hours of support have been increased are more likely to have positive views and experiences, but this relationship is much weaker. Disabled people with positive experiences as social care users are much more likely to emphasise the role of flexible, personalised support and good relationships with planning and support staff as drivers of improvement.

aving sufficient hours in your care package may be an important pre-condition for feeling that services effectively meet needs, but this appears to be a first step towards getting the right support.

55 per cent of disabled social care users do not have enough hours in their care package. 

Many more social care users do not have enough hours in their packages than have received a cut in the last five years. These results suggest longer-term, more entrenched unmet support needs amongst social care users. 53 per cent of social care users whose support hours have stayed the same since 2010 do not have enough hours. Some disabled people’s care packages have not increased to meet evolving support needs and their conditions and aspirations have changed.

Flexible support

Half (51 per cent) of social care users with fluctuating needs say support does not fit in around their changing needs.

For many social care users, independence is not just about ‘what’ they do and are supported to do, but also the ‘when’, ‘how’ and ‘who’. Flexible, personalised services are identified as key to adapting support to changing needs, getting the most out of social care services and feeling in control of your own life. When describing how they feel social care services have become better at supporting them, many disabled people emphasise the role of more flexible support, and the value of this for their independence and quality of life.

Half (50 per cent) of social care users feel the services they receive generally or always match what is written in their care plans. A third (32 per cent) of social care users are not getting the standard of care agreed in their care plans.

For many disabled people, the reliability of formal help is as significant as flexibility in producing services which support people to achieve the outcomes that are important to them. Disabled social care users frequently mention inconsistency in support staff as a key driver for support services not meeting the expectations set out in care plans.

Choice and control

28 per cent of disabled social care users have ‘complete’ or ‘a lot’ of choice and control in planning their care. 41 per cent have ‘very little’ or ‘none’.

Choice, self-determination and autonomy are central to the way many disabled social care users define independence, and to the ways people describe achieving and maintaining flexible, personalised services which support independent living.

63 per cent of social care users who have choice and control say using a Direct Payment or Personal Budget has helped. 41 per cent of those who do not feel they have choice or control say using a Direct Payment or Personal Budget could help them in the future.

Many social care users highly value Direct Payments and Personal Budgets. Disabled people told Scope about improvements to their ability to live independently and to have choice and control over the support they use. Some described limitations on the impact of self-directed support as a result of insufficient funding, and the need for additional advice and support to get the most out of services. 

56 per cent say they need care planners to be more understanding and respectful of what’s important to them in order to have choice and control.

Relationships with care planning staff 

Many disabled people describe the importance of trust and accountability, as well as respect and understanding, in their relationships with care planning staff. Some disabled social care users feel that the care system limits choice and autonomy, because of planning staff maintaining too much control, and because of inflexibility in the system. In some cases, disabled people are so concerned about losing support that they do not feel able to make criticisms of or suggestions about the services they use.

Half (49 per cent) of social care users say planning their care with the same people each time would give them more choice and control. 30 per cent of those who have choice and control say that planning care with the same people each time has helped.

Disabled social care users value consistency in planning staff, while others identify a lack of consistency and join-up within social services as a barrier to having choice and control. Disabled social care users who feel that the different staff involved in their social care work well together describe positive outcomes for their ability to achieve the things that are important to them. 

Joined up support

Disabled social care users also emphasise the need for more join-up and better co-ordination between social care and other forms of support. Some people found giving similar information to a number of different agencies, all controlling different forms of support, challenging and time-consuming. Some social care users want more join-up in assessments for support in order to simplify the process, while others see more joined up assessments as a mechanism for improving disabled people’s access to the support they need, and creating more personalised and more effective services

Half (51 per cent) of social care users who currently lack choice and control say having an advocate at future meetings to plan and review care would help. 12 per cent of those who have choice and control have benefited from this help.

Some disabled people feel unable to effectively argue their own case at care planning meetings, and describe feeling anxious about assessments and disempowered at meetings. Many disabled people draw on support from a wide range of sources to navigate the care planning process and get the most out of their care and support services. This includes advocacy, legal advice, support from family, friends and charities. Other social care users do not have the advice and support they need to get the most out of their care and support services.

Future expectations of care and support services

A third (33 per cent) of social care users expect services to get worse at supporting them over the course of the next Parliament. Another 10 per cent think they will lose access to support entirely.

Future expectations of care and support services lag behind past experiences. Fewer social care users expect services to improve (11 per cent) than say things have become better over the last five years (19 per cent). A greater proportion expect their support to get worse or to be withdrawn (43 per cent) than say that services have actually become worse (36 per cent).

This raises further questions around how low expectations of support services might be affecting disabled people’s future aspirations and ability to plan for a more independent future through the care planning process.