Quality statement 3: Future planning and review

Quality statement

People growing older with a learning disability are involved in developing a plan for the future and reviewing it at least annually.

Rationale

People with a learning disability often start to experience age-related health conditions earlier than the general population. Encouraging them to start planning for the future helps to establish what is important to them and what their preferences are before a crisis point or life-changing event is reached. These conversations should also involve the person's support network and recognise that the balance of caring relationships can change as carers (often parents) grow older and the person with a learning disability takes on a caring role. People growing older with a learning disability should have an opportunity to review these plans at least annually and every time their needs or circumstances change, to ensure that they continue to be supported according to their wishes and preferences.

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

Evidence of local arrangements to ensure that health and social care practitioners who have a good relationship with people growing older with a learning disability work with them and their support network to develop a plan for the future.

Data source: Local data collection, for example, service protocols.

Process

a) Proportion of people growing older with a learning disability who have a plan for the future.

Numerator – the number in the denominator who have a plan for the future.

Denominator – the number of people growing older with a learning disability.

Data source: Local data collection, for example, local audit of individual care plans.

b) Proportion of people growing older with a learning disability who were involved in developing their plan for the future.

Numerator – the number in the denominator who were involved in developing their plan for the future.

Denominator – the number of people growing older with a learning disability who have a plan for the future.

Data source: Local data collection, for example, surveys on the experience of care and support services among people growing older with a learning disability.

c) Proportion of people growing older with a learning disability who had their plan for the future reviewed in the past 12 months.

Numerator – the number in the denominator who had the plan for the future reviewed in the past 12 months.

Denominator – the number of people growing older with a learning disability who have a plan for the future.

Data source: Local data collection, for example, local audit of individual care plans.

Outcome

Proportion of people growing older with a learning disability who feel that their wishes are respected as their circumstances change.

Numerator – the number in the denominator who reported feeling that their wishes were respected as their circumstances changed.

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, such as surveys on the experience of support among people growing older with a learning disability.

What the quality statement means for different audiences

Service providers (such as community learning disability teams, adult social care services or GP practices) ensure that health and social care practitioners have the skills and knowledge to support people growing older with a learning disability and people in their support network to develop plans for the future that address changing needs and circumstances before a crisis point or life-changing event takes place. They also ensure that systems are in place for these plans to be reviewed at least annually and every time the person's needs or circumstances change.

Health and social care practitioners (such as learning disability nurses, social care workers or GPs) encourage people growing older with a learning disability and people in their support network to make plans for the future that can address their changing needs, wishes and capabilities, and promote their independence and wellbeing. The plans should consider possible changes to housing needs, financial and legal issues, any caring relationships (including mutual caring) as well as end of life care decisions, including where the person wants to be at the end of their life. Because people's needs and wishes change, they should work with the person growing older with a learning disability to review the plan at least annually and every time the person's needs or circumstances change.

Commissioners (such as clinical commissioning groups or local authorities) ensure that specifications for services for people growing older with a learning disability include having a person-centred plan for the future that is reviewed at least annually. They also ensure that facilities and services are in place to provide people growing older with a learning disability and people in their support network with the care and support they need as their circumstances change. This may include transport to help them get to services, appointments and activities, or housing adaptations.

People growing older with a learning disability are supported to consider how things may change for them in future. They can talk about things like where they want to live in the future and what to do if a family member can no longer support them. They think about changes to their life, health, and the care they will need if they get ill or near the end of their life. The plan is checked and updated at least every year and every time their situation or needs change.

People from the person's support network (family, friends, carers, advocates or others who provide emotional and practical help to the person) are involved in making plans for the future with the person growing older with a learning disability. This may cover who will help with money and decisions if they are no longer able to. Their caring responsibilities are recognised in these plans as well as the potential for those responsibilities and circumstances to change over time. They can also say how much longer they think they will be able to support the person with a learning disability.

Source guidance

Care and support of people growing older with learning disabilities (2018) NICE guideline NG96, recommendations 1.4.5 and 1.4.6

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]

Plan for the future

A proactive plan led by the person with a learning disability supported by family members and carers most involved in their care and involving a practitioner who has a good relationship with the person and communicates well with them. Key components of the plan for the future should include:

  • Housing needs and potential solutions.

  • Any home adaptations or technology that may address people's changing needs as they grow older.

  • Members of the person's support network (both paid and unpaid).

  • Any help the person gives to family members, whether this will continue as they age, and the impact this may have on their health and wellbeing.

  • Planning for what will happen if someone who the person relies on dies or is no longer able to provide care and support.

  • Financial and legal issues, for example whether someone has been appointed to have lasting power of attorney for the person.

  • The provision of information on wills, trusts and benefits.

  • Planning for unexpected changes or emergencies.

  • Planning for a time when the person may lack capacity to make decisions themselves, in line with the Mental Capacity Act 2005.

  • Consideration of deprivation of liberty safeguards, for instance if planned changes to care or the care environment are likely to increase restrictions on the person.

  • End of life care decisions – including where the person wants to be when they die. These decisions should be reviewed at least once a year.

[NICE's guideline on care and support of people growing older with learning disabilities, recommendations 1.4.5 and 1.4.7]

Equality and diversity considerations

People with a learning disability may have difficulties communicating because of disability or sensory impairment. Those with a severe or profound learning disability may have particularly complex needs. Practitioners working with people with a learning disability on plans for future may have to identify support necessary to engage with them in a meaningful way. This may include involving speech and language therapists or working with family members 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 to communicate well.