Research Realities: Self-directed care, personalisation and people with profound and multiple disabilites

There are 16,000 adults with profound intellectual and multiple disabilities in England. Melanie Henwood finds there is still a long way to go before their needs are fully met, although self-directed support points the way forward

The Research

Title: Raising our sights: services for adults with profound intellectual and multiple disabilities

Authors: Professor Jim Mansell

Institutions: Tizard Centre, University of Kent


This is the report of a review of services for adults with profound intellectual and multiple disabilities. It presents 33 detailed recommendations to the government on what needs to happen to ensure further progress with the agenda of Valuing People.


Valuing People Now, published in England in 2009, set out a three-year strategy for people with learning disabilities. It was clear that despite good progress with delivering the vision of Valuing People set out in 2001, less was being achieved for people with learning disabilities with more complex needs. Jim Mansell was asked by government to undertake a review of services.


Mansell’s work in the learning disabilities field will be well known to many readers; he brings a highly principled, value-based approach and a vision that has always been about changing expectations and raising the bar on what needs to be achieved.

This report explores the lived experiences of people and their families, draws on other published research in this area, and highlights poor practice alongside examples of what can be achieved. Hence the title of Raising our Sights, because as Professor Mansell observes: “I believe that we can achieve considerably more for this group of people than we have in the past.”

There are an estimated 16,000 adults with profound intellectual and multiple disabilities in England (out of a total population of 52 million). In an average population area of 250,000 this means there will be 78 adults with these complex needs and every year three young people with profound intellectual and multiple disabilities become adults (a figure that will rise to five by 2026).

As Mansell observes: “that this is a relatively small, easily identifiable group with undeniable needs for support should make improving services easier.”

Despite this, it is clear that often little is known at the local level about the needs (or even whereabouts) of people, and transition from children’s to adult services remains a difficult and typically poor experience for people with learning disabilities and complex needs.


Mansell argues that there is now an opportunity for a clear break with the low expectations of the past and for real improvement to be achieved, supported by two key principles: person-centred services and the potential of information technology.

Tailoring services to individual needs and preferences is the key to success; it is also very demanding to get right. Too often service models have meant that “adults with profound intellectual and multiple disabilities would be congregated together in larger groups in day centres or nursing homes”.

Person-centred support

Good practice examples of self-directed services all featured families taking a leading role and “often battling against the perceived indifference of public services to get what they needed for their disabled family member.” Not only do these services respond to the needs of the individual person, but they treat the whole family as expert: “recognition of the expertise and commitment of the family means that these services are not only person-centred, but they are also family-centred.”

Good support also revolves around personal assistance and the quality of one to one relationships with staff. Mansell comments that there is great potential to improve quality of life if staff build on the foundation of a good relationship with the person they support by using person-centred approaches.

Nonetheless, as Mansell observes, “these approaches are not yet widely understood or implemented”. Although families often emphasise the importance of personal assistants being – above all – people with the right values and attitudes, rather than people with specific experience or training, it is clear that personal assistance is far from being unskilled work, and Mansell recommends that local authorities should develop and train the social care workforce with the involvement of service users and their families.


Because of the intensity and complex nature of their needs, services for adults with profound intellectual and multiple disabilities will be more expensive. In particular, costs will be associated with providing personal assistance which is crucial to achieving a good quality of life. Mansell remarks that there appears to be no research on the cost-effectiveness of services for this client group. However, good services are more likely to demonstrate cost-effectiveness in terms of:

● Higher quality of life.

● Lower costs falling on families (including non-monetary costs).

● Lower needs in other areas (such as health).

● Lower future needs.

Barriers to progress

Despite the positive messages and the opportunity to bring about wide-ranging changes in support for people with profound and complex needs, Mansell acknowledges that there are real challenges to achievement. While the personalisation agenda creates opportunities, there are also risks to its roll-out that could compromise wider development.

Mansell highlights concerns that local authorities will only offer self-directed support where they can make savings in expenditure (and overlooking the wider dimensions of cost-effectiveness identified above). Moreover, the benefits of using self-directed support can be undermined by bureaucracy and paperwork to comply with rules and procedures, particularly if families are inadequately supported or are unaware of advocacy and brokerage services.

While there have been considerable achievements with the implementation of the personalisation agenda since its genesis in late 2007, Mansell cautions that “it is not so well understood or embedded in services that it will survive on its own. Continued leadership from government will be required to ensure that personalisation is not compromised.”

Assistive technology

Mansell argues there is enormous scope for developing the application of assistive technology in using microswitches to indicate preferences or to control aspects of the environment. It is notable that such developments are beginning to be apparent in schools and colleges, and some young people with profound intellectual and multiple disabilities will have experienced them.

Mansell comments that these innovations appear “to be almost unknown in services for adults with profound intellectual and multiple disabilities.”


A key part of the personalisation agenda is not only that people should have maximum control over their support, but that they should be able to participate fully in the community.

The barriers to such social inclusion can still be substantial and major improvements are needed to the built environment. In this and other areas there are opportunities for local authorities to tackle these barriers as part of their “place shaping” role. Other recommendations address health care, wheelchair services, further education, and day activity.

The last of these often raises particular concerns among families. The increased emphasis on participation in community-based activities in the community throughout the personalisation agenda has led to day centres closing, and many families are anxious about the adequacy of community-based alternatives.

Mansell comments that in re-designing day services it is important that “provision is made for a local base from which people can access different activities.” This might include, for example using supported accommodation as a base.


Mansell concludes that many of the recommendations he makes do not require large amounts of extra resources, so much as reasonable adjustments to policies, procedures, rules and priorities.

Moreover, because of the intensity of support from staff that people with profound intellectual and multiple disabilities require, “person-centred services are not likely to be significantly more expensive than the old congregate models of care.” Other recommendations will require new investment, and that message is challenging for any government in the current economic climate.

Mansell remarks that resource pressures “may influence the speed with which the recommendations of this report can be implemented but should not change the direction of policy and practice.”

Almost a decade on from the visionary approach of Valuing People it is clear that the direction of travel is right but that the journey has yet to begin for many people with the most intense and complex needs. Mansell’s review provides a concise and compelling analysis of current shortcomings and the way forward. It should provide a clear blueprint for the next administration.

Melanie Henwood is an independent health and social care consultant

Links and Resources

HM Government (2009), Valuing People Now: A three year strategy for people with learning disabilities

●Raising our sights download


Practice implications

Understanding local needs

Few authorities have good information about the number of adults with profound intellectual and multiple disabilities. Accurate information is essential for planning and should be part of the Joint Strategic Needs Assessment.


Better information is needed on the cost-effectiveness of services. However, it is important that this takes full account of wider factors (including costs and benefits for families) and does not focus solely on local authority expenditure.

Advocacy, advice & Brokerage

Too often families are deterred from personalisation and self-directed support because of the perceived burden of administration. User-led organisations (ULOs) have a central role to play in supporting service users and their families. Local authorities should stimulate ULOs and self-help groups, along with commissioning independent advocacy services.

Improving transition arrangements

The transition from children’s to adult services is often poor. Better transition arrangements are needed to ensure proper planning and continuity.

Training personal assistants

Local authorities have responsibilities in developing and training the social care workforce. Training must ensure person-centred approaches are developed and should involve families and adults with profound intellectual and multiple disabilities in delivery.

Day activities

Local authorities should ensure that adults with profound intellectual and multiple disabilities have access to a wide range of meaningful activities. As local day services are closed, local bases need to be developed from which people can access different activities.

This article is published in the 20 May issue of Community Care magazine under the heading Services for people with multiple learning disabilities






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