Care and support of people growing older with learning disabilities
NICE guideline [NG96] Published date: April 2018
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People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.
1.1 Overarching principles
Access to services and person-centred care
1.1.1 Ensure that people growing older with learning disabilities have the same access to care and support as everyone else. In line with the Equality Act 2010, this must be based on their needs and irrespective of:
marriage and civil partnership
pregnancy and maternity
race, religion and belief
sex and sexual orientation
other aspects of their identity.
[ This recommendation is adapted from the NICE guideline on service user experience in adult mental health.]
1.1.2 Ensure that care and support for people with learning disabilities is tailored to their needs, strengths and preferences and is not determined solely by their age or learning disability.
1.1.3 Service providers and commissioners must make reasonable adjustments to health, social care and housing services to ensure they are fully accessible to older people with learning disabilities and their family members and carers, in line with the Equality Act 2010.
1.1.4 Recognise that people with learning disabilities may be carers, but may not see themselves as such. Ask the person if they have caring responsibilities and, if so, offer them a carer’s assessment to meet their needs  .
Communicating and making information accessible
1.1.5 Support people’s communication and information needs in line with NHS England’s Accessible Information Standard. This could also include:
Seeking advice from, or referring people to, a speech and language therapist whenever needed.
Providing an independent interpreter (that is, someone who does not have a relationship with the person) so that people can communicate in their first language.
Finding out before an appointment how the person prefers to communicate and receive information.
Extending appointment times to give more time for discussion.
Giving people written information (such as appointment letters and reminders) in different languages or in an accessible format of their choice, for example Easy Read, audio books, films or by using online resources such as specialist learning disability websites.
Providing information on advocacy services and, if the person needs it and consents to it, providing an independent advocate who will attend appointments.
Using visual aids and short, clear sentences during consultations and conversations.
Talking to the person’s family members and carers if appropriate, and with the person’s consent.
1.1.6 Provide people with learning disabilities and their family members, carers and advocates with accessible, tailored information about:
the range and role of different health services (such as health checks and screening)
how to access health, social care and support services
the community and specialist services that are available, and their purpose
housing options that they could think about for the future
planning for end of life care
financial issues, including wills, trusts and benefits
how to raise a safeguarding concern if they have one.
1.1.7 Social care and primary care practitioners should regularly review the communication needs of people with learning disabilities as they grow older to find out if they have changed. This should usually be when:
other needs are being assessed, for example, during general health and dental checks
there is reason to believe their communication needs may have changed.
Decision-making, mental capacity and consent
1.1.8 Health and social care practitioners must understand and take into account the Mental Capacity Act 2005 when working with people with learning disabilities, including:
assuming the person has the mental capacity to take part in decision-making unless it is established that they lack capacity
supporting people to make decisions – finding out their views, encouraging them to take part in the decision-making process and ensuring all steps have been taken to help them express their views and make their own decisions
assessing their capacity to make decisions – this assessment should take place where and with whom the person wishes
undertaking best interests decision-making when it is established that a person does not have capacity to make a decision  .
Involving people, family members, carers and advocates
1.1.9 Health and social care practitioners should listen to, actively involve and value key members of the person’s support network in the planning and delivery of their current and future care and support, if the person agrees to this. Regularly check people’s willingness and ability to be involved in this way.
1.1.10 Ask people who they want to involve in planning and providing their support, regardless of whether they have close family. Be aware that some people do not have close family members, friends or carers.
1.1.11 Offer independent advocacy whenever it is wanted or needed by a person with a learning disability. As a minimum, it must be offered as described in the Care Act 2014, Mental Capacity Act 2005 and Mental Health Act 2007.
1.1.12 Find out and prioritise the needs and preferences of the person. Ensure these are not overshadowed by the decisions or preferences of others, including when the person lacks capacity.
1.1.13 Be aware that people with learning disabilities may need support to communicate their needs or retain information. With the person’s consent, share information with their family members, carers or advocate, for example about:
any changes that might be needed to their care and support
symptoms, management and prognosis of the person’s health conditions.
1.2 Organising and delivering care and support
Planning and commissioning local services
1.2.1 Health and social care commissioners should have an understanding of the needs of people growing older with learning disabilities in their area and know what mainstream and specialist services are available locally to support people as they grow older.
1.2.2 Commissioners should identify the number of adults in their area with a learning disability (and the number of families and carers), and use this information to identify gaps in provision, organise services and plan future provision. This could be done by encouraging GPs to develop and maintain registers of people with learning disabilities and getting information from other support services, including education and the Department for Work and Pensions.
1.2.3 Commissioners and service providers should ensure family members, carers and advocates of people with learning disabilities have access to age-appropriate community support services and resources such as:
short respite breaks (both at home and away from home)
support groups for family carers, including siblings, and for older people with learning disabilities who have caring responsibilities
a single point of contact for practical information, emotional support and signposting.
1.2.4 Commissioners and service providers should provide housing options that meet the changing needs of people with learning disabilities as they grow older. This includes:
making reasonable adjustments to support people to stay in their current housing as their physical and emotional needs change, for example providing equipment or housing adaptations
arranging housing for people with learning disabilities who are in unstable housing situations, for example those who are homeless or in temporary accommodation (including people seeking asylum)
residential and nursing care, which reflect gender, sexual orientation and cultural preferences.
1.2.5 Commissioners should make available locally a wide range of family and community support options to meet the needs of people with learning disabilities as they grow older, including the needs of people in later old age, and their family members and carers. These might include:
ensuring accessible transport links are available to help people access local facilities
access to advocacy services.
1.2.6 Consider the use of technologies such as telehealth and telecare to complement but not replace the support provided by people face to face.
1.2.7 Commissioners should identify where there are gaps in community optometry, audiology and dental services for people with learning disabilities and address those gaps.
1.2.8 Mental health commissioners should develop protocols to ensure that people with learning disabilities, including people in later old age, have access to mainstream mental health services for older people, including dementia support.
1.2.9 Commissioners and service providers should ensure that people with learning disabilities have equal access to a range of community services that reflect the cultural diversity of the local area and people’s hopes, preferences, choices and abilities as they grow older.
1.2.10 Commissioners and service providers should establish links between specialist learning disability services and mainstream older people’s services. This could be done by bringing them together to help identify gaps and inform service development, sharing information and learning, and linking into voluntary sector umbrella groups.
1.2.11 Commissioners and service providers should provide opportunities for people with learning disabilities to meet up and socialise, for instance through social clubs and support groups.
1.2.12 Commissioners and service providers should ensure there is a wide range of community-based physical activity programmes available and encourage people to take part to promote their health and wellbeing. Examples include dancing, swimming, bowls, using the gym, organised walks and chair-based exercise classes.
1.2.13 Commissioners and service providers should arrange accessible opportunities for people with learning disabilities to engage in education, employment and volunteering.
1.2.14 Local authorities should consider introducing schemes to make transport easier for older people with learning disabilities. For example:
providing free travel such as London’s ‘Freedom pass’
using minibuses as community transport
starting ‘buddy’ schemes to enable independent travel
developing transport especially for people living in rural locations
schemes such as ‘JAM’ cards (Just A Minute) – which can be used to alert transport staff that people have a learning disability
schemes to help people with a personal budget to travel to activities and self-advocacy groups.
Assessing people’s need for care and support
1.3.1 Ensure that all assessments of care and support needs are strengths based, person centred and conducted as early as possible. Follow the recommendations on care and support needs assessment in NICE’s guideline on people’s experience in adult social care services.
1.3.2 Practitioners carrying out assessments of care and support needs should have:
access to the person’s full history (medical, social, psychological and the nature of their learning disability) and
an understanding of their usual behaviour.
1.3.3 Practitioners carrying out assessments of care and support needs should be alert to any changes in the person’s usual behaviour. This could include how they are communicating or their activity levels, and symptoms (such as weight loss, changes in sleeping patterns or low mood) that could show something is wrong or they are unwell.
1.3.4 Be aware that people growing older with learning disabilities might have difficulty communicating their health needs. When their needs change, think about whether these changes could be age-related and do not assume they are due to the person’s learning disability or pre-existing condition (diagnostic overshadowing).
1.3.5 Practitioners carrying out assessments of care and support needs should help people to think about what they want from life as they age. This should include:
asking people how they would like to spend their time and with whom, and enabling them to explore personal and sexual relationships
encouraging them to develop support networks and to build and maintain links with friends and family and with community groups – these might include social, cultural and faith-based groups.
Assessing the needs of family members and carers
1.3.6 Practitioners carrying out assessments of care and support needs should take into account the needs, capabilities and wishes of families and carers. Also take into account that there may be mutual caring between people with learning disabilities, and their family members and carers, who are likely to be older themselves and have their own support needs.
1.3.7 Practitioners must offer people who are caring for a person with a learning disability their own carer’s assessment, in line with the Care Act 2014.
1.3.8 Based on assessment, provide families and carers with support that meets their needs as carers.
1.3.9 Review the needs and circumstances of carers at least once a year and if something significant changes.
1.3.10 Actively encourage carers to register themselves as a carer, for example, with their GP.
1.4 Planning and reviewing care and support
Person-centred planning and review
1.4.1 Practitioners should carry out regular person-centred planning with people growing older with learning disabilities to address their changing needs, wishes and capabilities and promote their independence. This should include planning for the future (see recommendations 1.4.5 to 1.4.13). Involve their family members, carers and advocates as appropriate.
1.4.2 Include transport needs in people’s care and support plans, to help them get to services, appointments and activities.
1.4.3 Local authorities should plan people’s care and support in a way that meets the needs of all family members, as well as the person themselves. This might include combining the personal budgets of different family members.
1.4.4 Give help and information to families and carers, including siblings, as part of planning and providing support for people growing older with learning disabilities. For example, tell them about sources of support for people after a family bereavement.
Planning for the future
1.4.5 Health and social care practitioners should work with the person and those most involved in their support to agree a plan for the future. Help them to make decisions before a crisis point or life-changing event is reached (for example, the death of a parent or a move to new housing).
1.4.6 Planning for the future should:
be led by the person themselves with input from family members, carers or advocates as appropriate (regardless of whether they provide care and support themselves)
involve a practitioner who has a good relationship with the person and communicates well with them
involve practitioners who have good knowledge of local resources
take into account the whole of the person’s life, including their hopes and dreams as well as the things they do not want to happen
include considering the needs of family members and carers
seek to maintain the person’s current support and housing arrangements, if this is their preference
be reviewed every year and whenever the person’s needs or circumstances change.
1.4.7 Include as key components of a future plan:
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.
1.4.8 When helping the person plan where they will live in the future and who they will live with, take into account whether other family members rely on them for support.
1.4.9 Encourage and support people to be active and independent at home regardless of their age or learning disability. This might include doing household tasks, making their own decisions and plans or leading group activities.
1.4.10 Make reasonable adjustments to people’s homes as they grow older to make it possible for them to stay in their current home if they want to. For example, consider a support phone line, daily living equipment, telehealth monitoring and home adaptations, such as shower room conversion, wider doorways or a lift between floors.
1.4.11 Review at least once a year the housing needs of people who are being supported by social care staff at home.
1.4.12 Ensure that the person is centrally involved in any decisions about moving from where they currently live. Also include an advocate or, if appropriate, a family member or carer.
1.4.13 If a move is agreed with the person, practitioners should work with them and their support network to start planning for this straightaway. Planning could include:
arranging for the person to visit the new setting
discussing how they will maintain their existing support networks and develop new ones.
1.5 > 1.5.1 Healthcare practitioners should encourage people growing older with learning disabilities to choose a family member, carer or advocate to bring with them to medical examinations and appointments if they would like this support.
1.5.2 Explain clearly to people with learning disabilities what will happen during any medical appointments as well as their likely follow‑up care. In line with the Mental Capacity Act 2005, healthcare practitioners must take all reasonable steps to help the person understand this explanation.
1.5.3 As well as explaining to people beforehand what will happen, continue to explain what is happening throughout the appointment and ensure there is enough time set aside to do this. If the person agrees, also explain to their family member, carer or advocate what will happen.
1.5.4 If the person needs a medical examination, give them a choice, wherever possible, about where it takes place. Aim to do it in a place that is familiar to them, which is welcoming and appropriate to their needs.
1.5.5 Support family members and carers, for example by providing information, so that they can help people with learning disabilities to access health services.
1.5.6 Consider commissioning training for people and their family members and carers in recognising changes and managing age-related conditions such as:
blood pressure and cholesterol
changes to skin condition such as itchy or fragile skin