This chapter should be read in conjunction with the following chapters: Children and Young People with Complex Needs; Physical Disability; Adult Unpaid Carers; Sensory Loss and Impairment
Recommendations
Third sector, Cardiff and Vale University Health Board and Cardiff and the Vale of Glamorgan Local Authorities to:
- Continue to base services on co-production; individual care and support plans should
also be co-produced - Focus services towards what is important for the individual, such as encouraging an
active independent lifestyle, and promotion of friendships - Build on existing provision to provide opportunities for work and activities, as per
the Cardiff and Vale of Glamorgan Joint Commissioning Strategy (84) - Ensure information provided is accessible and jargon free to improve service access
and maximise their impact - Identify and mitigate against inequities amongst people with learning disability
Cardiff and the Vale of Glamorgan Local Authorities to: - Continue to promote the “community first” approach when planning placements
and accommodation
Cardiff and Vale University Health Board to: - Continue to improve uptake of annual health checks and screening
Overview
A learning disability is identified when an individual has a significantly reduced ability to understand new or complex information, to learn new skills with difficulties coping independently, which started before adulthood (92). Welsh Government has adopted the social model of disability, and it should be noted that although the term “people with learning disabilities” does not align with this model, this is currently the preferred term amongst members of All Wales People First (79). This chapter focusses on adults; children
with learning disability are discussed in chapter 6.
The Cardiff and Vale of Glamorgan Joint Commissioning Strategy for Adults with Learning Disability 2019-2024 states that, in 2017, there were 7,081 adults in Cardiff estimated to have a learning disability, of whom 1,175 received support from the Learning Disability Services (equal to 78% of people with a moderate or severe learning disability). For the Vale of Glamorgan, 2,400 adults were estimated to have a learning disability, of whom 448 received support from Learning Disability Services. This represents 90% of those with a moderate or severe learning disability (84).
There is a voluntary register held within each local authority which has more up to date data, but this underestimates the number of people with learning disability: in Cardiff, there were 1,389 people with learning disability on the register in 2018/19; in the Vale of Glamorgan there were 496 people with learning disability on the register during this time period (203). In 2019/20, the GP register for Cardiff and Vale had 2,220 people registered with learning disability (1605 from Cardiff, and 615 from the Vale of Glamorgan), of 15,448 people registered across Wales (204).
Engagement was conducted with 20 participants who attended one of three focus groups. In addition, 27 respondents to the public survey stated they had a learning disability or autism; and 61 respondents to the provider survey provided services for people with learning disability or autism. Their views are not representative of the population of people with learning disability in Cardiff and the Vale of Glamorgan, but provide depth of insight to complement other data sources.
What has changed since 2017?
Prior to COVID-19
The following changes have taken place since the previous Population Needs Assessment.
Nationally:
- Learning Disability Improving Lives Programme (2018), which promotes community support to reduce admissions, and promote early discharge (205).
- Improving Care, Improving Lives report by the National Collaborative Commissioning Unit in 2020, which highlights the care received by inpatients in learning disability hospitals (96).
- Reducing Restrictive Practice Framework in 2021 which applies to health and social care, education, and childcare settings (206).
Regionally: - Cardiff and Vale Learning Disability Needs Assessment was published in 2018 (92).
- Publication of the Cardiff and Vale Joint Commissioning Strategy for Adults with Learning Disability in 2019 (84).
- Cardiff and Vale UHB service improvements including implementation in 2018 of 120 Learning Disability Champions in the University Health Board; two new UHB Acute Liaison Nurses in 2020; a daily report notifying of all inpatients with a learning disability; Easy Read feedback questionnaires; and launch of the “1000 Lives” care bundle (43).
- In Cardiff, a transition day service was developed for young people with complex needs, and a further education college course for young people with complex needs is being piloted. Child to adult services transition were improved through social services systems and staffing; and a support planner service that through person centred planning, supported people to access a wide range of inclusive community opportunities prior to COVID-19. The Vale of Glamorgan has a complex needs day service and young people are accessing community opportunities and college courses at Cardiff and Vale Barry college site.
COVID-19
Health impacts of COVID-19 on people with learning disability in Wales, COVID-19 has disproportionately affected people with learning disability, resulting in a higher mortality rate not due directly to the learning disability, but due to other factors (79). Analysis of mortality data from March to November 2020 demonstrated, at a Waleswide level, a higher rate in the people with a learning disability as compared to the general population (207). Further analysis of data is needed to understand the direct and wider
impacts of COVID-19 on mortality and morbidity at the health board level. Professional leads have identified that people, their families, and service providers have worked hard to support people to remain safe.
People with learning disability are in a priority group for COVID-19 vaccination. However, getting the vaccination for COVID-19 has been challenging for some as learning disability was not recorded in their primary care medical records in Wales. The immunisation experience was reported to be better in the presence of a family member or carer; a healthcare professional who took additional time to explain the process; and personalised approaches to the vaccination such as administration at home or in the car (208).
The three Easy Read survey respondents reported neutral or good well-being before COVID19 and currently. They felt their health is the same or better now than before COVID-19. One focus group participant was concerned about their weight: “put on too much weight lately” and praised interactions with the dietitian. Carers of people with learning disability in Wales report fatigue and stress (208). A minority of carers in a Learning Disability Wales report had received respite (208).
Impact of COVID-19 restrictions
Focus group participants (n=20) identified COVID-19 restrictions as a barrier to doing what matters to them through the closure of community organisations, and the impact of physical distancing, limiting social interactions. Learning Disability Wales report that some school students who were unable to understand the restrictions, blamed school staff for limitations on socialisation, which had a negative impact on relationships between staff and students (208).
Welsh Government reported that those shielding have experienced loneliness and depression (79). Restrictions have negatively impacted relationships and people’s sense of independence (79). Differing restrictions at different periods of time in different areas have contributed to stress and anxiety – in particular for individuals living in shared households (79). The lack of face to face services is challenging for many service users, professionals, and carers. However, some people with learning disability have seen the reduction in services or virtual services as beneficial; and have identified new ways of connecting with others using digital platforms (79). Professional leads reported that some individuals preferred virtual
communications, and increased access to services especially for those in the Vale of Glamorgan, where transport may be difficult. In planning COVID-19 recovery, individuals’communication preferences should be taken into account. A Learning Disability Wales report has identified a positive impact of COVID-19; stating “new opportunities to learn skills previously not available to [people with learning disabilities]
have emerged, which it was previously wrongly assumed would be beyond their capabilities” (79).
Impact of COVID-19 on service delivery
Providers of care and support for people with learning disability and autistic people responding to the PNA survey identified that service users were: increasingly reliant on family members; had difficulties with isolation, mental health, financial hardship, an increasing challenging behaviours; and a lack of respite for carers.
Professional leads reported that staffing of services was challenging, with difficulties in recruitment and retention including of agency staff. In Cardiff and the Vale of Glamorgan, staff teams have transitioned to working at home. Services have worked hard to support staff wellbeing and develop new ways of working to meet local needs and outcomes. Many mainstream and specialist day opportunities temporarily closed during the pandemic. The local authorities were able to maintain complex day services albeit at reduced capacity. Third sector and private providers worked hard to maintain contact with individuals known
to them and services reopened when government guidance allowed and worked to increase capacity as it becomes safe. Respite services continued but at a much reduced capacity during this period.
What are the care and support needs?
Many of the needs identified in the 2017 Population Needs Assessment remain valid.
Individual
Health
People with learning disability are more likely to have or develop other comorbidities; and face additional barriers to investigation and diagnosis. For example, 40% will develop moderate/severe hearing loss but are less likely to receive a diagnosis than the general population; 25-40% will develop mental health problems but these may not be diagnosed as they may be attributed to the learning disability. Dementia, vision loss, epilepsy and other conditions are much higher in people with learning disability than the general population (84) (92) (96). Dementia often presents at a younger age in people with learning disability, and is more prevalent: 22% amongst people with learning disability, and 5% in the general
population aged 65+ (92).
The Royal National Institute of Blind People (RNIB) estimate that 10% of people with learning disability are blind or partially sighted and those living on their own are less likely to have received a recent eye examination than those living with support staff (92) (209). In Cardiff and the Vale of Glamorgan, an estimated 3,792 adults have learning disability and moderate/severe hearing loss (92). Behaviours of concern can be prevalent in children with learning disability and often persist without intervention; this increases the risk of substance misuse, mental health issues, and interaction with the criminal justice system (92).
Language and communication
Data from 2017 identified only 13 adults with learning disabilities in Cardiff who were Welsh speakers. This is anticipated to increase as more children and young people receive Welsh
medium education (84). Survey respondents with a learning disability or autism wanted better support and wider understanding of non-verbal communication, and increased access to Makaton. Easy Read
survey respondents wanted people to speak calmly, plainly, and without jargon. The small number of respondents to both surveys is acknowledged, and is not representative of the wider population of people with learning disability.
Friendships and relationships
Friendships, family, and partners are important to people with learning disability: “Going on holiday with my mum, going on holiday with our group”. The Cardiff and Vale of Glamorgan Joint Commissioning Strategy consultation identified the need for an active, fun social life for adults with learning disability (84). Prior to COVID-19, 13/24 survey respondents said they felt lonely some or all of the time, whereas now 18/24 feel lonely. Easy Read survey respondents stated they spend some or lots of time with other people; as they did before COVID-19. All three respondents received help from family, a friend or a neighbour.
Community
Supported Autonomy and Co-Production
Professional leads observed that routine involvement of people with learning disabilities in consultations had improved, however, true co-production should be the aim. The Cardiff and Vale of Glamorgan Joint Commissioning Strategy includes co-production, collaboration, choice and control through listening and jointly finding solutions (84).
Focus group participants had strong opinions about their rights to independence and decision making, and believed that they exercise those rights: “I speak for myself and contribute to the decisions that affect my life, or have someone who can do it for me”; “Nobody tells me what to do”. Some did acknowledge that this was within a framework of boundaries set by others: “It’s right for other people to advise, if they think it’s the wrong decision they have to step in”.
However one person demonstrated increased reliance: “I rely on other people to steer me and tell me what to do”. Future independence was linked to moving into their own place with friends or a partner, but participants were aware that their learning disabilities may make this challenging: “I have dyscalculia, how am I ever going to move out and pay my bills?” Survey respondents with learning disability or autism mostly reported having adequate or full control over their lives (16/24); whereas 7 stated they had no or low control. All three Easy Read survey respondents reported they feel they are treated with respect, and that their voice was heard in decisions regarding their care and support.
Health care
Difficulties accessing healthcare was commented on in the focus group. A Wales-wide report on health care for people with learning disabilities
identified concerns that not all people with learning disability had an up to date care plan with input from the full multi-professional
team, however, many were positive regarding their care (96).
The review noted that a community-first approach to care should be taken to avoid inappropriate or
lengthy hospital admissions, and transitions should be carefully planned with all agencies involved (96). Restrictive interventions should be kept as a last resort (96) and a holistic approach should be employed to managing or preventing such use. Previous engagement identified the need for accessible and understandable information provision, the right support at the right time (including early, crisis, respite, and specialist support), and smooth transitions between children’s and adult services (84).
Professional leads identified the importance of providing reasonable adjustments to improve access to healthcare. The Cardiff and Vale of Glamorgan Joint Commissioning Strategy will work towards this through co-production with the Learning Disabilities Partnership Group; and recruiting a Learning Disability Liaison Nurse to work in Cardiff and Vale UHB (84).
Transport
Affordable, accessible transport and access to assets were identified in focus groups. Professional leads observed that this is especially important in the Vale of Glamorgan due to its rurality. Focus group participants wanted to feel safe in their local community, for example, when walking the dog.
Wider determinants of health
Deprivation
There are no local data available on deprivation and learning disability; however, it is recognised more widely that social determinants of health including material deprivation measure of poverty; the extent to which people can afford essential items such as heating and food (184)), contribute to the inequalities in health experienced by people with learning disability (92).
Focus group participants discussed their desire for
good, secure, paid work – and emphasised the
importance of work for their mental health.
Financial worries impact on other decisions:
“Worried about financial things if I move, where
do you start with all the bills?” In both Cardiff and
the Vale of Glamorgan, a Support Planning Service
helps people identify vocational and leisure
activities, such as voluntary work and community
groups (84).
Easy Read survey respondents reported that they had a small amount of money to spend on themselves each week, and that they were able to pay bills and debts on time.
Education and employment
Focus group participants expressed their desire for a job, and were positive about getting support at work to help them do what matters to them. Small numbers of people with learning disabilities are undertaking foundation apprenticeships or traineeships (40 in Cardiff; 15 in the Vale of Glamorgan) (210). Professional leads identified establishment of roles with local colleges (such as Cardiff and Vale College) so that those who are unable to undertake a full course can still gain experience and life skills. Curriculum pillars on the
Personalised Learning Pathway at Cardiff and Vale College include health and well-being,
employability, community, and independence (211). Complex day opportunities have improved in both Cardiff and the Vale of Glamorgan. Professional leads identified that Cardiff is skilled in positive behavioural support whereas the Vale of Glamorgan is skilled in dealing with complex health needs. Further development aims to provide holistic services in both areas. A pilot has been undertaken in Cardiff and Vale to meet local need and wishes and develop local day opportunities and further
education for those transitioning from school, through partnerships working with education
colleagues. It also includes the development of an adult plan, which looks at local opportunities for people who wish to stay locally. This has been positively received by people with learning disabilities, their families, and school staff; enabling people to maintain friendships and support networks (84).
Survey respondents with learning disability or autism were mostly in work or education prior to COVID-19 (15/24), and currently 14/24 remain in work or education. Four did not work due to illness or disability; and three were caring for a family member. Note that these are small numbers that are not representative of the wider community of people with learning disabilities.
Housing
Community placements for people with learning disability are offered in the person’s own home, with parents/family, in foster home, or in lodgings/supported living, and should be considered the default for most people. For people in crisis, specialised community care should be the first port of call, with inpatient care reserved for those who cannot be safely managed in the community (96). A 2018 needs assessment for Cardiff and the Vale UHB identified that approximately 50% of people with learning disability were living in their own homes (92).
Of the 390 people open to the Vale of Glamorgan learning disability team in 2021, 71 were in supported accommodation and 46 in residential placements (including residential homes for older people, residential college and in and out of county placements). In addition, there were 23 households supporting 32 individuals in long-term adult placement (29). Seventeen people are in residential placements funded by Cardiff and Vale UHB (212). In 2021, in Cardiff, there were 310 people living in local supported living accommodation, 26 people in adult placement, 109 people live in residential provision funded or part funded by Cardiff Council, and 38 people living in residential care funded by Cardiff and Vale UHB (30). The Closer to Home Project within the Cardiff Housing Strategy aims to provide local
placements for people with complex needs (89). In the Vale of Glamorgan, the Supporting People Programme has prioritised the provision of additional adult placements for people with learning difficulties or mental health issues (213). The Cardiff and Vale of Glamorgan Joint Commissioning Strategy prioritises “having my own home”; which will support people’s independence, for example, developing the Adult Placement Service to enable friends to live together, as well as reducing the number of people placed out of area (84).
Both Cardiff and the Vale of Glamorgan provide support for independent living that enables people and their families to have confidence in paying bills and dealing with safety at home. Needs identified by focus group participants included addressing the long waiting list to move house; living more independently for example with a partner or friends; and being provided with more details on the property before moving in. Participants understood “home” to be a way of living and the people you live with rather than the physical building, therefore no responses were given around housing conditions; although it was felt that mental health needs needed to be taken into account by housing support services. Participants who lived on their own linked it to their independence: “I’m quite happy and
carefree”. These responses are in line with other engagement work in Cardiff and Vale of Glamorgan (84).
Unmet needs
Engagement work and professional leads have identified the following areas of unmet need:
- Independence: a need for support for independent living that enables people (and
their families) to have confidence in activities such as paying bills and dealing with
safety at home - Healthcare services: difficulties making an appointment; a need for more specialised
mental health services; lack of forensic services for people with learning disability - Employment: a need for more good quality secure jobs with support
The following gaps in knowledge were identified: - Estimated numbers of people with learning disability are known, but comprehensive
confirmed figures are not available - Deprivation levels in populations of people with learning disability
- Sexual health needs amongst people with learning disability
What are the range and level of services needed?
Prevention and assets
Prevention of comorbidities is crucial; especially given the increased prevalence of additional medical diagnoses amongst people with learning disability. Based on a regional needs assessment, people with learning disability are more likely to be under- or overweight (79); weight management is therefore important and dietitians were respected in focus group discussions. However, other lifestyle risk factors such as smoking and drinking are at a lower prevalence amongst people with learning disability (79), and so may not require focussed attention to the same extent. Wider social determinants of health including having supportive communities are also preventative and key to well-being.
In 2016/17, 45% of people who were on the learning disabilities register in Cardiff and Vale had a health check with their GP (84). In 2019/20, of the 2158 patients on the GP learning disability register, 854 (36%) had received an annual health check (41). Focus groups and survey respondents identified many assets as supportive to their wellbeing. At a personal level, family, friends, partners, and pets were supportive: “Walking my dog, he makes me happy”. However, some people were anxious about encountering things
they were scared of, such as fireworks, and people on bicycles. Family were seen to facilitate access to services. People within the local community made focus group participants feel welcome, for example “they know who I am, when I moved here my mental health got better”; “out in the street I feel independent, people make me feel like I am
treated OK and not judged”.
The following organisations working within the local community were identified:
- Third sector organisations such as Cardiff People First, Vale People First, and
Newport People First were identified as supporting people to make their own
choices: “[it] makes me happy”. Voluntary work within local charities was
appreciated
- Groups that provided a sense of
purpose and social interaction were
especially valued. These included local
community assets such as church, cafes,
local shops, green places for walking,
exercise classes, and adult education - Local Authority services such as social
workers, and NHS services, for example
dietitians
Professional leads identified Dewis Cymru as a helpful resource.
Community services
Healthcare services
Healthcare services need to be aware of the high prevalence of comorbidities in people with learning disability. The higher mortality experienced by people with learning disability needs to be addressed as a priority in planning future services. Services need to provide early intervention, specialist intervention, and adopt a community-first approach (92). People with learning disability wanted to access healthcare themselves, for example over the telephone rather than booking an appointment online; services should consider the preferred method of communication by service users.
Work, volunteering and day opportunities
The Cardiff and Vale of Glamorgan Joint Commissioning Strategy promotes work, volunteering and day opportunities; people remarked on the positive impact in terms of confidence and independence. Existing services include day services, support planners (who work with people to understand their wishes in the development of care packages), and links with a number of third sector organisations and community groups. Future plans include focusing on people transitioning from child to adult services and building further links to develop more opportunities (84). Professional leads state that Cardiff Council have the Into Work scheme, providing specialist employment support for people with learning disabilities. The Vale of Glamorgan Council has Vale Communities for Work, a free programme that, through specialist support, helps job seekers in the Vale to access employment and volunteering opportunities.
“After college, ‘T’ was very isolated at home with few friends. A support planner helped them identify what they wanted to do and learn. This included confidence with travelling, making friends, doing an IT course, learning a sport and working towards employment. They were supported to find a full week of opportunities including IT courses, interest based social clubs, tennis lessons, and a referral to ‘into work’ which will support training, confidence building, and seeking employment” – case study, role of the support planner
(30)
Partnership approach
Co-production is a keystone in current service provision The Cardiff and Vale Joint Commissioning Strategy plans to expand on this, for example, through including service users in contract monitoring and review meetings (84). Focus groups organisers reported that participants “were very pleased to do this focus group and would like to do more, it made them feel more independent and like their opinions matter”. Provider survey respondents recommend availability of clear information free of jargon, and provision of documents in Easy Read including clock times.
What is likely to happen in the future?
The Cardiff and Vale Joint Commissioning Strategy estimates that the number of adults with learning disabilities in Cardiff will increase by 125 between 2017 and 2025; and will stay stable in the Vale of Glamorgan (84). In line with wider demographic changes, the population of people with learning disability is aging. In addition, people with learning disability have increased likelihood of development of other comorbidities such as dementia (84) (96), which will increase demand for and change the nature of care and support needs (93).
The Liberty Protection Safeguards are planned to apply from April 2022 onwards, and protect people aged 16 and above who need treatment through deprivation of liberty but are unable to consent (214).
Recommendations
Third sector, Cardiff and Vale University Health Board and Cardiff and the Vale of Glamorgan Local Authorities to:
- Continue to base services on co-production; individual care and support plans should
also be co-produced - Focus services towards what is important for the individual, such as encouraging an
active independent lifestyle, and promotion of friendships - Build on existing provision to provide opportunities for work and activities, as per
the Cardiff and Vale of Glamorgan Joint Commissioning Strategy (84) - Ensure information provided is accessible and jargon free to improve service access
and maximise their impact - Identify and mitigate against inequities amongst people with learning disability
Cardiff and the Vale of Glamorgan Local Authorities to:- Continue to promote the “community first” approach when planning placements
and accommodation
Cardiff and Vale University Health Board to: - Continue to improve uptake of annual health checks and screening
- Continue to promote the “community first” approach when planning placements