Quality statement 1: Person-centred needs assessment

Quality statement

People growing older with a learning disability are actively involved when their care and support needs are being assessed.

Rationale

Performing certain tasks, doing things that used to be easy or maintaining links with the community and other people may become more difficult as people with a learning disability grow older. Care and support needs assessment should be an ongoing process that captures these changes and influences the care and support people receive. People with a learning disability need to be actively involved in this process to ensure that the assessment builds on their strengths, aspirations and desires, and truly reflects what they want from their life as they age.

Quality measures

A specific age limit is not used to define older people with a learning disability in this quality standard (see the definitions section). For measurement purposes, commissioners may wish to define a specific age group or range of age groups based on their local population.

Structure

a) Evidence of local arrangements to ensure that people growing older with a learning disability are actively involved when their care and support needs are being assessed.

Data source: Local data collection, for example evidence of speech and language therapists or an advocacy service being used to support the assessment.

b) Evidence of local arrangements to ensure that practitioners carrying out assessments of the care and support needs of people growing older with a learning disability have access to the person's full history (medical, social, psychological and the nature of their learning disability).

Data source: Local data collection, for example, records from community learning disability teams or GP practices.

Outcome

Proportion of people growing older with a learning disability who feel actively involved in shaping the care and support they receive.

Numerator – the number in the denominator who feel actively involved in shaping the care and support they receive.

Denominator – the number of people growing older with a learning disability who receive care and support from health and social care services.

Data source: Local data collection, for example, surveys for people with a learning disability on their experiences of care and support they receive.

What the quality statement means for different audiences

Service providers (such as GP practices, community learning disability teams or adult social care services) ensure that care and support needs of people with a learning disability are continually reviewed as they grow older. They ensure that the practitioners have the skills and capacity to carry out person-centred care and support needs assessments that reflect what the person with a learning disability wants from their life as they age. They should also ensure that practitioners carrying out care and support needs assessments have access to comprehensive information about communication needs, full history (medical, social, psychological and the nature of their learning disability) and usual behaviour of the person with a learning disability.

Health and social care practitioners (such as GPs, learning disability nurses or social care workers) support the person growing older with a learning disability to lead on and be actively involved in their care and support needs assessments. They encourage the person to consider not only their basic health and care needs, but also how they would like to spend their time and with whom, enabling them to explore personal and sexual relationships. They also encourage the person growing older with a learning disability to develop and maintain links with friends, family and community groups. The health and social care practitioners involved in the assessment should know the person and understand their communication needs, their full history (medical, social, psychological and the nature of their learning disability) and their usual behaviour. They should also allow the person time to prepare for the assessment and ensure that this is an ongoing process that also involves the person's support network (family, friends, carers, advocates or others who provide emotional and practical help to the person).

Commissioners (such as clinical commissioning groups or local authorities) have a good understanding of the care and support needs of people growing older with a learning disability in their area and what services should be available to promote health and wellbeing in this group. They commission and monitor services providing person-centred care that focuses on care and support needs of people with a learning disability, which also recognises their strengths, aspirations and desires as they grow older. They also commission services that may be necessary to actively involve the person with a learning disability in the care and support needs assessment, such as speech and language therapy, interpreters or independent advocacy.

People growing older with a learning disability are encouraged to say what is important to them and are given time and support to prepare for discussions about their care and support needs. They can talk about what they are good at, what they like doing and what they want to do in future.

People from the person's support network (family, friends, carers, advocates or others who provide emotional and practical help to the person) support the person growing older with a learning disability to be actively involved in the care and support needs assessment. Their needs are also understood – they can have carer's assessment and get support when they need it. Mutual caring arrangements are recognised as part of this process.

Source guidance

Care and support of people growing older with learning disabilities (2018) NICE guideline NG96, recommendations 1.3.1, 1.3.4 and 1.3.5

Definitions of terms used in this quality statement

People growing older with a learning disability

A specific age limit is not used in this quality standard to define people growing older because adults with a learning disability typically experience age-related difficulties at different ages, and at a younger age than the general population.

[NICE's guideline on care and support of people growing older with learning disabilities, terms used in this guideline]

Actively involving people with a learning disability

People with a learning disability should lead the assessment and decide where and when they would like to meet, and who else should be involved. They should also have enough time to prepare for the assessment. The assessment should be carried out by someone they feel comfortable with, who understands their communication needs and can encourage them to be engaged. The practitioner may need help from someone in the person's support network to ensure that the person has a true opportunity to express their needs, aspirations and desires.

[Expert opinion]

Equality and diversity considerations

People growing older with a learning disability may have difficulties communicating because of disability or sensory impairment. Those with a severe or a profound learning disability may have particularly complex needs. Practitioners assessing the person's care and support needs may need additional support to engage with the person in a meaningful way. This may include involving speech and language therapists or working with people from the person's support network on finding solutions to allow for effective communication. They may also use augmentative and alternative communication approaches such as manual signs, pictures, objects and communication aids to help people communicate well.