Learning disability and autism

Please note: The data in “demographics and trends” has been recently updated in preparation for the population assessment update taking place over the next year. The remainder of this page will be updated when the population assessment is published on 1 April 2022.

In response to new requirements under the forthcoming Autism Code of Practice, a separate and dedicated section for autism is under development and will be available shortly.

Overview and key messages

There are several ways in which the term ‘learning disability’ can be defined, however for the purposes of this assessment, Learning Disability is defined as:

• A significantly reduced ability to understand new or complex information and to learn new skills (impaired intelligence)
• A reduced ability to cope independently (impaired social functioning); or
• These are in evidence before adulthood and have a lasting effect on development.

The way in which the needs of people with a Learning Disability are met has changed over the last twenty years. People who would historically have been placed in institutional care are increasingly being supported to live in their communities. Health and social care services along with the third sector collaborate to maximise the independence and potential of those who use our services.

Although Autism is not a learning disability it has been included in this section as services for people on the spectrum are generally provided from within learning disability teams or community mental health teams and NICE guidance (2008, 2012) provides standards for provision of services.

Demographics and trends

• In 2020 there were an estimated 1,206 people aged 0-17 with a moderate learning difficulty in Carmarthenshire, 770 in Pembrokeshire, and 395 in Ceredigion.
• In 2020 it was estimated that there were 68 people aged 0-17 with a profound and multiple learning difficulty in Carmarthenshire, 43 in Pembrokeshire, and 22 in Ceredigion.
• In 2020 it was estimated that there were 241 people aged 0-17 with a severe learning difficulty in Carmarthenshire, 154 in Pembrokeshire, and 79 in Ceredigion.
• In 2018 there were an estimated 2,006 people on the learning disabilities Quality and Outcomes Framework (QOF) register in the West Wales region.

Autistic Spectrum Disorder is thought to affect 1 in 100 people in the population (Baird et al, 2006). The research shows that there is a high rate of co-morbidity between Neuro-developmental disorders (ND) e.g. Autistic Spectrum Disorders (ASD)/Attention Deficit Hyperactivity Disorder (ADHD), and also of other mental health conditions. The National Autistic Society reports that males are three times more likely than females to be diagnosed as autistic.

Current and future care and support needs

Across the region, numerous mechanisms are in place for engagement with users and carers to obtain their perspective on the care and support they would like to receive. Examples include:

• Engagement events facilitated by Carmarthenshire People First in October 2015 to inform the development of Carmarthenshire County Council and Ceredigion County Council’s Equality Strategies, focusing specifically on the needs of people with a learning disability
• Consultation in support of the development of Pembrokeshire County Council’s Strategy for People with Learning Disabilities in May 2016
• Ongoing dialogue between service commissioners, providers and users and carers through local stakeholder groups in each county area.

Current care and support provision

A range of care and support services are in place across the region to support adults with a learning disability to live fulfilled lives within the community. Whilst specific care and support options vary across counties, current provision includes:

• Universal services For example leisure centres, community centres, libraries, adult education opportunities although it is recognised that these services do not yet provide consistent equal access to people with LD
• Preventative services Council grant funding supports the growth of alternative community services that are co-produced with members of communities enabling people to build upon their own individual strengths and resources. These include good neighbour schemes, luncheon clubs, community enterprises, community/ voluntary services
• Specialist Health interventions Consultant psychiatry, psychology, community nursing, Speech and Language Therapy, Occupational Therapy and Physiotherapy provide specialist interventions to adults with a diagnosed learning disability both within in-patient and community setting
• Specialist Health Autistic Spectrum Disorder Diagnostic and Pre/post Counselling Service The current service consists of allocated sessions from a locum consultant and a specialist practitioner
• Day Opportunities Providing social contact and stimulation, reducing isolation and loneliness, maintaining and / or restoring independence, offering activities which provide mental and physical stimulation, providing care services, offering low-level support for people at risk
• Pathways to employment A range of local initiatives including FRAME, Workways Plus, Stackpole Estate and ESTEAM in Pembrokeshire and Opportunities Team and ‘Steps’ in Carmarthenshire. In addition national programmes such as ‘Work choice’, run by the Department for Work and Pensions, support those with lower level LD
• Respite provision Short breaks/respites is a key commitment in recognition that planned breaks are an essential part of supporting families
• Commissioned Services Individually commissioned supported living arrangements which enable people with learning disabilities to live in their own tenancies with support at varying levels, and residential services which include both the provision of accommodation and care on site, with care being available 24 hours per day. These include a regional Shared Lives service, managed for the region by Carmarthenshire County Council and providing a route for people to return to their communities and is an example of an alternative to traditional residential services. Advocacy services are commissioned across the region; and
• Direct Payments These provide another way for individuals to access a range of opportunities by being able to choose who provides the services they need

 

Assessment and care planning for people with a learning disability is managed through multi-disciplinary Community Teams for Learning Disability (CTLDs), in place across the region and staffed by health and social care professionals. The teams also work jointly with Disabled Children’s Teams and Transition Teams with occasional involvement from age 14 upwards and undertaking assessment when a young person in receipt of services reaches 17. Transition teams play a key role in supporting the transfer of care needs between one service and another, and typically between adult and children’s services. Data held by Data Cymru indicates that the reliance on residential care in each of the three counties is above the Welsh average. Pembrokeshire currently ranks third, Ceredigion sixth and Carmarthenshire eighth in Wales in relation to the proportion of people with a learning disability receiving care and support that are supported in this way.

Gaps and areas for improvement

• Improving the recognition, diagnosis and the treatment and management of people with neurodevelopmental disorders including ASD and ADHS
• Empowering people with a learning disability to decide who provides their support and what form that support takes
• Strengthening pathways back to local communities following education, and developing local education, volunteering and work opportunities in communities, making the necessary adjustments for people with a learning disability
• Increasing access and availability of appropriate local housing and accommodation to enable people with a learning disability to live as independently as possible, in a place of their choice
• Developing consistent, integrated commissioning and procurement processes that are based on co-production principles, which involve user-led community-based groups and fora in the design and delivery of services
• ‘Right-sizing’ existing packages of care to ensure they meet current needs, facilitate personal development, increase independence and deliver cost-effective services that ensure best outcomes for service users
• Developing a consistent, outcomes-based performance framework for service delivery across the region, utilising data to support future planning and commissioning