How providers can boost support for people with learning disabilities as they grow older

By Christine Towers, Research and Service Development Manager at the Foundation for People with Learning Disabilities

Like the population in general, people with learning disabilities are living longer. It has been estimated that the number of people over the age of 60 with a learning disability will have increased by nearly 40% between 2001 and 2021 and that by 2030, the number of adults aged over 70 using services for people with learning disabilities is likely to have doubled.

While it is good news that people’s life expectancy is increasing, it raises questions over how commissioners and support providers ensure that the right support is available. A concern for the Foundation for People with Learning Disabilities is whether support providers have the knowledge, skills and values to respond to people’s changing needs as they grow older so that their lives are as happy, healthy and fulfilling as possible.

This means people receiving person-centred support that encourages self-determination and participation while making sure people receive the health care and housing and support arrangements they need. While there are some examples of good practice, this is not consistently available to everyone and some people’s changing needs are not being met.

The Foundation responded to these concerns by developing an evaluation toolkit specifically for support providers to improve the quality of life for people with learning disabilities as they grow older. The toolkit uses eight person-centred outcomes (based on research by the Association for real change), such as ‘I feel safe and secure in my own home’, ‘I am still doing the activities that are important to me, and trying new things if I want to’ and ‘I am well supported when the people who are important to me move away or die’.

In the toolkit, each of these outcomes has approximately six indicators of best practice against which a whole organisation, a specific service or even 1:1 support can be assessed. It is structured so that this assessment leads to the development and delivery of an action plan to improve the support that is provided. For each outcome there are also suggested resources to help organisations achieve best practice.

The Foundation is suggesting that people with learning disabilities, their families and friends should be involved throughout this process of self-assessment and action planning. They should also be able to contribute to making necessary changes, for example, through delivering training to managers and staff.

The toolkit was piloted with a few provider organisations, including Vibrance, who trialled it in a residential care home in Essex and a day opportunities service in Tower Hamlets. Sue Warren, Vibrance’s quality manager, said that the outcomes provided a comprehensive measure of how services are responding to individuals’ needs as they age.

Sue and I met with staff teams to discuss how well they were achieving the outcomes; this experience showed how the process encouraged critical reflection and shared problem-solving. As Sue commented: “It encouraged staff to be open and honest about how well their service was supporting people as they got older. It provided opportunities to identify good practice within the services and, as a result, staff seemed comfortable in being honest about areas where they were experiencing difficulties”.

We are keen to hear from support providers about changes they have identified and/or delivered as a result of using the toolkit as well as examples of existing good practice that have been identified. We would also love to hear about examples of how support providers have involved people with learning disabilities and their families and friends in the process and the changes that have resulted. We are looking at how the good practice indicators could be adapted to be used by peer quality checking groups.

For further information about the toolkit contact Christine Towers at ctowers@fpld.org.uk