JSNA Vulnerable Groups

1.1 Introduction

“Young people and adults with Autistic Spectrum Conditions (ASCs) living in the London Borough of Wandsworth should be able to live fulfilling and rewarding lives within a society that accepts and understands them. People should be able to receive a diagnosis and any support required. People with ASCs can depend on mainstream public services to treat them fairly as individuals.” Wandsworth Market Position Statement

Autism is defined as a lifelong developmental disability that affects how people perceive the world and interact with others. Autism is characterised by impaired social interaction and communication, severely restricted interests and highly repetitive behaviours (see 1.2 diagnostic criteria for details). Autism can manifest in different ways meaning people need different levels of support. Some autistic people also have learning disabilities but autism itself is not a learning disability. There is also a greater prevalence of some mental health and physical health conditions amongst autistic people.

Terminology can vary and an autistic person might be described as having:

• Autistic Spectrum Condition (ASC)
• Autistic Spectrum Disorder (ASD)
• Atypical autism
• Classic autism
• Kanner autism
• Pervasive developmental disorder
• High-functioning autism
• Asperger syndrome
• Pathological demand avoidance.

In this JSNA we use autism as a term that covers all these diagnoses.

The evidence suggests that most self-advocates and groups of autistic people prefer the term “ autistic person” to “person with autism” and that is the wording that has been used in this chapter ¹.

National strategy is governed by the Autism Act 2009 and the 2018 Think Autism Strategy Governance Refresh. The strategy has 19 objectives under five headings:

• measuring, understanding and reporting the needs of autistic people
• workforce development
• health, care and well-being
• specific support
• participation in the local community.

Children and young people with autistic spectrum disorders are covered in the JSNA Start Well Chapter. There is an estimate of 1,530 adults with autism living in Wandsworth, nearly 1 in 100 of the adult population.

This section of the JSNA looks at the barriers faced by autistic adults in society and, where data is available, in Wandsworth in particular. Most services focus on autistic children and young people. However, autism is a lifelong condition and can have a significant impact on adults. In addition, a significant number of autism diagnoses take place in adulthood. Autistic adults with a diagnosis are entitled to a Care Act Assessment but may not necessarily be eligible for support. Wandsworth is in the process of developing a new local strategy for autism that will cover all age groups.

It is important to remember autism can affect people differently. The following sections are a generalisation and not all statements will apply to each autistic person.

Autism is unique in being the only condition that has its own Act, but there is no requirement to provide statutory social care services for autistic people.

Autistic people are more likely to be:

• unemployed or under-employed
• socially isolated
• at greater risk of some physical and mental health conditions
• vulnerable to suicide
• undiagnosed, particularly if they are women, BAME or older people
• communication impaired
• hypo or hyper-sensitive to sensory stimuli
• bullied, victims of hate crimes and exploitation
• in the Criminal Justice System.

1.2 Diagnostic Criteria

Diagnosis is the formal identification of autism, usually by a Multidisciplinary Diagnostic Team (MDT). Although autism is a lifelong condition and often diagnosed in childhood, there are significant numbers of adult diagnoses. Nationally, between April to December 2018, 5,255 adults were referred for assessment where their need was suspected autism ².

Although autism is different in every person, for a diagnosis to be made a person will usually have:

• Persistent difficulties with communication and social interaction
• Restricted and repetitive patterns of behaviours, activities or interests, that limit and impair everyday functioning.

Tools used for a formal diagnosis of autism vary and include:

• Diagnostic Interview for Social and Communication Disorders (DISCO)
• Autism Diagnostic Interview – Revised (ADI-R)
• Autism Diagnostic Observation Schedule (ADOS)
• Developmental, Dimensional and Diagnostic Interview (3Di).

1.3 Comorbidities

Some conditions are commonly diagnosed alongside autism. These include Attention Deficit Hyperactivity Disorder (ADHD) and Pathological Demand Avoidance (PDA). While these are starting to be seen as potential characteristics of autism, PDA is also seen as a diagnosis in neurotypical people.

A learning disability is defined as a reduced intellectual ability and difficulty with everyday activities ³ (for example, household tasks, socialising or managing money) which affects someone for their whole life. Research into the overlap between autism and learning disabilities varies in the estimation of the proportion of autistic people who also have a learning disability. Most studies show between 44% and 52% of autistic people may have a learning disability and between 31% and 36% of people with a learning disability may also be autistic ⁴.

Some physical health conditions are more prevalent amongst autistic adults than in neurotypical adults. These include ⁵:

• immune disorders such as allergies and asthma
• metabolic disorders such as diabetes
• heart disease
• motor disorders such as cerebral palsy.

Some autistic people may avoid going to a doctor due to stress, fear of change (especially with unfamiliar doctors) and worry about procedures such as colonoscopies. This means diagnosis and treatment of other conditions can be delayed which can have a long-term physical health impact.

Studies have also found that gastrointestinal disorders are more common amongst children with autism than the neurotypical population, and up to a third of autistic people may experience epileptic seizures compared to 1-2% of the neurotypical population ⁶.

Amongst autistic children, an estimated 30-60% are also diagnosed with attention deficit disorder (ADD) or attention deficit hyperactivity disorder (ADHD), compared to 6-7% of neurotypical children. Autism can disrupt sleep for children and adults ⁷.

Some Common Mental Disorders (CMD) can be prominent amongst autistic people. 40% of autistic people have symptoms of at least one anxiety disorder compared to 15% of the neurotypical population. This is often combined with depression. A combination of factors that lead to vulnerability to stress include:

• biological differences in brain structure
• history of social difficulties including decreased self-esteem and an overestimation of threats
• problems finding flexible responses to change and apparent threats.

Obsessive Compulsive Disorder (OCD) is also more common in autistic people. This is thought to be because of a combination of genetic factors and psychological predisposition. Diagnosis of OCD in autistic people is difficult because it may be mistaken for repetitive behaviour.

It is estimated 20% of the population will experience a period of depression in their lifetime, this is more common in autistic people. They can also find it harder to seek help for depression because change can be daunting and raise anxiety levels. It can be difficult for them to explain their feelings, symptoms, and concerns.

1.3 Prevalence and the Level of Need in the Population

There are around 700,000 people with autism in the UK, more than 1 in every 100 of the population.

The Adult Psychiatric Morbidity Survey (APMS) included a measure for autism for the first time in 2007. It showed 1% of the adult population had autism (decreasing by age from 1.1% aged 16-44 to 0.8% aged 75+). The Department of Health funded a project to build on this study and found that the actual prevalence was closer to 1.1% of the population. The APMS carried out in 2014 showed a prevalence of between 0.5% and 1.3% of the population – the large range is due to the low prevalence combined with the size of the sample.

There is no register of adults with autism. However, in Wandsworth there are 737 children with a diagnosis of autism known to schools, approximately 1.65% of the population. This is higher than the London average of 1.5%, and England average of 1.37%. The lower prevalence in adults found in the APMS is probably due to:

• an increase in diagnosis over time, either due to an increased prevalence of the condition or better diagnostic criteria now compared to the 1970s and 80s
• lower life expectancy for autistic people.

Using age-related national prevalence rates based on a total national population of 1%, it is estimated that the number of people in Wandsworth with autism in 2020 is approximately 2,700, 1.02% of Wandsworth’s population. The table below assumes that the percentage of the population with autism remains steady.

Estimated number of autistic people in Wandsworth

Source: GLA population estimates & Office of National Statistics (2016)

Most new diagnoses of autism occur in children. However, because of improved diagnostic criteria and an increase in awareness, more adults are being diagnosed. Nationally 17,975 ⁸ new referrals for suspected autism were made between April and December 2018. 70% of these were children and 5,255 were adults. If this rate is consistent it would suggest that nationally, approximately 7,000 adults will be referred for a new autism diagnosis. 64% of all referrals were men and boys. (The data does not show how many people received a diagnosis).

Autism is not regarded as a social care need. However, there are some people with a social care need who also have autism. In 2017-18, there were 87 new assessments in Wandsworth Adult Social Care for autistic people:

• 52 had a learning disability
• 15 had a mental health need.

1.4 Current Services

While providing a social care assessment is a statutory requirement, unless autistic people have other needs such as learning disabilities, it is unlikely that they will be eligible for statutory social care support. Most support services designed for autistic people are non-statutory. In Wandsworth, work is underway as part of the refresh of the Autism Strategy, to review services and develop actions to improve the experience of autistic people in accessing local autism services.

The Wandsworth Autism Advisory Service (WAAS) is a multi-professional team that supports schools, organisations and families in Wandsworth to achieve the best possible outcomes for autistic children and young people. The service supports education establishments to enable all children with autism and social communication disorders to achieve their full potential.

WAAS offers a service which is available to all Wandsworth residents with a child or young person with a diagnosis of autism, Wandsworth schools, early years settings, services and professionals. The service also provides a more specialist and targeted offer which is accessed through referral to the service.

The WAAS works closely with partners across Wandsworth to provide a planned and graduated support for parents and families who have a child with autism (and those on the specialist pathway). The service provides a point of contact for specialist advice and support. It aims to up-skill families through a bespoke parent / carer training programme. Parent support is available to all Wandsworth residents regardless of the child/ young person’s educational placement. Up to date details of the parent offer can be found on the Wandsworth Local Offer.

Choice Support is commissioned by the Council to provide employment support for autistic people, with or without a learning disability. The service includes support in obtaining and maintaining employment, working both with the individual and their employer.

The National Autistic Society provides support and guidance for adults and children with autism, and their families. Their “Autism at Work” service works with employers to support autistic people in the workplace ⁹.

1.5 Predictive Factors

Autism is a lifelong condition that affects 1.1% of the population ¹⁰. Despite this relatively high prevalence, the causes are still largely unknown. Factors that can increase the likelihood of a diagnosis of autism include:

• an autistic sibling
• older parents
• certain genetic conditions
• very low birth weight
• some maternal metabolic conditions.

It is probable there are genetic factors responsible for some forms of autism. It is more likely to have multiple genes and an interaction with environmental factors rather than a single genetic cause. Identifying a predisposition to autism through genetic testing is, therefore, not possible ¹¹.

1.6 Related Effects of Autism

Autism and communication Autistic people have difficulties with interpreting both verbal and non-verbal language. They may find it particularly difficult to understand:

• facial expressions
• tone of voice
• jokes and sarcasm.

Some autistic people may not speak or may have limited speech. They will often understand more of what is said to them than they are able to express and may struggle with abstract concepts. Some autistic people benefit from using sign language or visual symbols instead of speech. Others may have good language skills but struggle to understand the expectation of others within conversations. This can manifest itself in a number of ways including repeating what the other person has said or talking at length about their own interests ¹².

Sometimes a diagnosis of auditory processing disorder can occur alongside autism. This condition impairs the ability of the person to understand what they hear and convert it into meaning. This condition can also occur separately to autism, there is currently no definitive understanding of how the two conditions are linked ¹³.

Eye contact can be hard for some autistic people to the point of causing physical pain if forced. This can often make normal social interactions difficult ¹⁴.

Autistic people can find it hard to decode everyday speech, especially when the person talking is using sarcasm, “kind lies” or “half-truths”. This inability to see subtext in a conversation can make autistic people vulnerable to exploitation, especially when friendship is being offered ¹⁵.

Masking is a behaviour where autistic people will try to imitate neurotypical behaviour in order to avoid social stigma. However, this can cause autistic people intense strain which can make coping harder ¹⁶.

“Information overload” is a familiar term when talking about email communications and social media. However, autistic people will often experience this in everyday life. If there is too much information (including sensory information) some autistic people can be distressed and shut down, unable to interact further. Some autistic people can use “pre-intentional” communication, talking to themselves to help them keep calm and focussed, or as a reaction to an exciting or distressing situation ¹⁷.

These communication difficulties mean that many autistic people can:

• appear to be insensitive
• seek out time alone when overloaded
• fail to seek comfort, help or support from other people
• appear to behave strangely or inappropriately
• become physically or verbally aggressive towards themselves or others when overwhelmed
• retreat into themselves and be unresponsive.

Failure to recognise the communication needs of autistic people can exacerbate the communication barrier and lead to autistic people shutting down or being labelled as having challenging behaviour.

1.7 What are the limitations to the data/information?

The number of people receiving social care services is small. Analysis of trends and future needs is therefore subject to large margins of error. Much of the other data are extrapolated from national prevalence rates and are therefore estimates based on the age of Wandsworth’s population, not the specific socio-economic profile of the Borough ³⁴.

The Department of Health and Social Care is putting measures in place to improve diagnostic data collection and analysis. Access to autism diagnosis varies across the UK, local areas use different diagnostic tools meaning diagnostic criteria is inconsistent ³⁵.

The number of people diagnosed with autism has increased significantly in recent decades. A study showed that at least 60% of the increase in Denmark was due to the change in diagnostic criteria and the inclusion of outpatient contacts. An American study showed that the situation was more complex involving multiple potential biologic and environmental factors, as well as changes in diagnostic practices. The Centre for Disease Control has increased its estimate of autism prevalence amongst children in the USA to 1 in 59. Their evidence shows that previously there has been persistent undercounting. They suggest the significant increase is due to improved identification, particularly amongst girls and minority groups. While most new referrals for diagnoses in the UK are children, there are still adults receiving a new diagnosis ³⁶.

Prevalence rates are often based on diagnosed conditions and therefore may be an underestimate of the actual level within the population. The APMS developed their statistics using a self-completed test. This test is a tool used as part of the diagnosis process but not definitive. Evidence shows that the Autism-Spectrum Quotient Test, AQ questionnaire produces many false negatives. People who score as not having autism may receive a diagnosis following further investigations. In addition, the sample was comparatively small, and the results are therefore subject to a larger margin of error ³⁷.

1.8 Diagnosis and Identification

Estimated numbers of autistic people in the population are subject to a large margin of error. Studies to determine population prevalence give varied results dependent on the criteria used. Diagnostic criteria has evolved as a greater understanding of autism has been developed. While increasing numbers of people are diagnosed in childhood, there are still several autistic people who receive a diagnosis in adulthood or who have not been diagnosed and are unable to access appropriate support services. Current knowledge of older people and autism is limited ³⁸.

There are two suspected under diagnosed groups:

• Women and Girls: More men are diagnosed with autism than women and the condition can often manifest itself in different ways by gender. There are a number of theories to explain the gender split but there is no conclusive evidence the split is due to genetic factors (i.e., men more likely to be autistic), or social and diagnostic factors (i.e., women less likely to be diagnosed) ³⁹
  
• BAME Groups: Evidence suggests BAME children and adults can experience difficulties with obtaining a diagnosis of autism, and more likely to be diagnosed incorrectly with other conditions ⁴⁰.

1.9 Interventions/Approaches According to the Evidence Base

Several weaknesses that have been identified with the current evidence base for the support needs autistic adults. This is partly due to the lack of services specifically for adults as they are often not eligible for social care support. If they have another condition, such as a learning disability or mental health condition, care is focused on that condition.

The National Institute for Clinical Evidence guidelines recommend psychosocial interventions rather than medication. There has been no convincing evidence that medication is effective in managing autism ⁴².
Applied behaviour analysis, although a common treatment, has been heavily criticised because it seeks to impose neurotypical behaviours on autistic people. A strength-based approach has been shown to be more effective because it works with the positives autism brings to people’s lives, especially their individual strengths.

A good understanding of autism is required to design and deliver support services tailored to individual need. This can be a challenge because people have a variety of characteristics. Autism training for front-line staff has been found to have a positive impact on people’s experience of services and autism friendly environments.

Research has found social skills training may be effective for in the reduction of depression, anxiety and inappropriate social behaviour. However most existing training is aimed at young adults and it is unknown whether the value for adults aged 30+ would be the same ⁴³.

Services that provide general support for independent living have proven successful. Peer support groups are another valued service and provide autistic people opportunities for social interaction and sharing experiences.

A multidisciplinary approach can reduce service costs, increase diagnosis rates, reduce crisis interventions, and improve employment rates.

2.1 Introduction

Physical and sensory impairments affect people across all ages of the life course. Impairments can be caused by a condition, injury or the result of ageing. Some may present from birth or can be sustained after a life-changing event. These impairments can be a great challenge for those in a world designed for able-bodied people. Depending on the impairment, a person may have issues with transport, access, and communication. The government has prioritised all disabilities through the Equality Act 2010 ⁴⁴. However, further progress is required to improves the lives of disabled people:

“All people should have the opportunity to be active citizens; live a meaningful life and make positive contributions to the community they are part of. People with a Physical or Sensory Impairment have the same aspirations as everyone else. They would like to be independent, have a job, have their own home, make and keep friends, form relationships and choose what they do in their spare time. People with physical and sensory disabilities should be recognised as equal and enjoy the same life opportunities as others. We want services in our Borough that actively work with people to define their goals and achieve them; services that consider the whole of a person’s life and to work with providers that are aware of varied areas of provision and make links across the care landscape.”
Wandsworth Market Position Statement

Defining disability is complex and contentious. The ‘social model of disability’ states people with disabilities encounter barriers in society including the environment, people’s attitudes and organisations. The ‘medical model’ is based on a belief that disability is caused by an individual’s health condition or impairment ⁴⁵.

Examples of definitions include:

• The Equality Act 2010 defines disability as having a physical or mental impairment that has a substantial and long-term negative effect on the ability to do normal daily activities. Long-term is defined in the guidance in terms of at least 12 months
• The World Health Organisation states that a disability “is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.”

For the purposes of this chapter, we are defining physical and sensory disabilities as “a physical, mobility or sensory condition that causes a person to face barriers in undertaking day to day tasks”. This fits with the national reporting model for social care which groups people by their primary support reason (PSR).

The social care Primary Support Reasons (PSRs) covered in this section are:

• physical support: mobility need
• physical support: personal care need
• sensory support: visual impairment
• sensory support: hearing impairment
• sensory support: dual impairment

Key UK legislation includes: * The Equality Act 2010 which is the UK’s legal framework designed to protect disabled people from discrimination ⁴⁶. * The Care Act 2014 which is the UK’s legal framework for Local Authority provision for adults with care and support needs under the principle of promoting wellbeing which includes ⁴⁷:

• personal dignity
• physical and mental health and emotional wellbeing
• protection from abuse and neglect
• control by the individual over day-to-day life
• participation in work, education, training or recreation
• social and economic wellbeing
• domestic, family and personal
• suitability of living accommodation
• contribution to society.

Physical and sensory disabilities become more prevalent with age, along with other long-term conditions, such as diabetes and may impact on mobility and personal care requirements. The average age of the adult disabled person in London is 43.7 years compared to average of 37.5 years for people without disabilities. Preventative support at a younger age may delay, reduce or entirely prevent the onset of further conditions or reduce deterioration ⁴⁸.

An estimated 30% of people with a long-term physical health condition also experience mental health problems, most commonly depression and anxiety, which can be exacerbated by social isolation. This can lead to significantly poorer health outcomes and a reduced quality of life. It is estimated that mental health problems increase the cost of NHS treatment of limiting long term physical health conditions by an additional £8,000 million to £13,000 million annually. The lowest estimate equates to £1 in every £8 spent on limiting long term physical health conditions ⁴⁹.

2.2 Prevalence and Level of Need in the Population

Using 2020 local prevalence rates, it is estimated there are over 46,300 people aged 18-64 (6.4%) whose ability to do day to day tasks is limited by long-term condition or illness including physical, sensory, learning disabilities and mental health conditions. Over 19,800 state they are significantly limited.

Applying national age-related prevalence rates to Wandsworth 18-64 population it is estimated:

• 4.1% (22,000) mobility impairments
• 0.8% (4,200) visual impairments
• 0.5% (2,800) severe hearing loss
• 7.8% (41,600) some hearing loss.

All these numbers are expected to increase over the next 30 years as presented in the table below.

Estimates of the number of people with disabilities in Wandsworth

Source: GLA population estimates; Deloitte Access Economics (2017) and Office for Disability Issues, (2011b)

However, these are based on national age-related prevalence rates and because of current and historical good services for hearing impaired people in Wandsworth, the actual numbers of this group may be higher, particularly in younger people with profound hearing impairments.

In 2018-19, there were a total of 451 adults aged 18-64 receiving social care services in Wandsworth for physical health and sensory needs, the table below.

People receiving social care services in Wandsworth with physical and sensory needs

Source: internal data

The proportion of people in this group receiving direct payments is 41%. While there is no specific benchmarking data for this group, the overall proportion of people aged 18-64 receiving their community-based services through direct payment is 28%, slightly lower than the England (31%) and London (29%) averages.

Out of the 451 people, 97% had a physical impairment. 21% needed mobility assistance only, and 75% required mobility and personal care support. An increase of 25% was used to estimate need by 2050. Due to the small numbers involved, the projections have a large margin of error. Within this group, an increase in social care need is anticipated and subject to change with unexpected external factors.

The proportion of the 18-64 year olds with mobility, visual and hearing impairments is expected to increase by 2050. It is unknown how the impact of the COVID-19 pandemic will have in terms of increasing the number of people with long-term ill health or receiving social care services. The projections and analysis of future trends is therefore subject to significant margins of error. Much of the other data are extrapolated from national prevalence rates. The estimates are based on the age of Wandsworth’s population but not the specific socio-economic profile of the Borough. Some people are reluctant to identify themselves as disabled due to the potential stigma or prejudice. Others may be deterred from formal services due to access difficulties (e.g., booking appointments via a telephone system).

2.3 Current Services on Offer

Within the legislative framework Wandsworth has a duty to promote wellbeing and ensure equality of opportunity for people with disabilities. People with physical and sensory disabilities often face barriers to undertaking day to day tasks which may require equipment, adaptation and support, or social and cultural change within communities. The national agenda for personalisation means putting individuals strengths and preferences at the centre of their care. Wandsworth follows a strength-based approach focussing on the abilities of the individual rather than their disabilities in order to overcome barriers and find solutions.

The Council continues to promote Direct Payment uptake to support choice and control and expects providers to continue to offer and develop a wider range of personalised and bespoke services. Currently 14% of this cohort are choosing to use this option to direct their own care.

Where a person with eligible social care needs chooses not to manage their own care through a Direct Payment, Wandsworth organises appropriate community-based services such as homecare and day care.

Housing and Accommodation

There are no accommodation-based services that specifically cater for this group in Wandsworth. However, there are four residential and three nursing homes that will take working age adults with physical and sensory disabilities. While recent admission figures are low for this group, evidence is that Out of Borough Placements are used to ensure people are placed in appropriate accommodation for their specific needs. There are five Extra Care Housing Schemes that accept people from age 55+ (the figure below). Three of these schemes are commissioned by Wandsworth Council and the other two are privately run.

A recent analysis of accommodation-based care needs suggested ⁵³ that there may be a need for some locally based supported living accommodation such as extra care provision for younger adults. This was due to all current placements being out of Borough. However, the conclusion was there was insufficient evidence for this need and further work is to be to be undertaken to inform decisions.

There is a Sensory Impairment Service in Wandsworth which provides services to visually impaired people including advice, equipment and training. Facilities at Liden Lodge School include Wandsworth Hearing Support and Vision Support Services. Voiceability Wandsworth is commissioned by the Council to support sensory disabilities, and Blind Aid provides support for reading and responding to mail.

Location of accommodation-based care services in Wandsworth

Source: internal data

2.3 Disability Prejudice, Social Isolation and Loneliness

Some of the barriers disabled people face involve lack of opportunities to make and sustain social contacts, leading to isolation and loneliness. This includes people with diverse impairments and personal circumstances. The barriers that people face include ⁵⁴:

• physical barriers such as limited access to social and community groups for someone with mobility issues or visual impairment
• communication barriers such as those faced by people with hearing impairments
• a national survey of people without disabilities 49% stated that they did not have anything in common with disabled people, 26% admitting that they have avoided engaging in conversation with a disabled person
  
• one in three disabled people in a national survey feel that there is a lot of prejudice against people with disabilities, another half feel there is some prejudice. When the same question was asked of people without disabilities, only one in five stated there was a lot of prejudice

These barriers have a tremendous impact on the welfare and quality of life of disabled people ⁵⁵.

• 53% from a national survey reported feeling lonely regularly, 23% saying they will feel lonely on any typical day
• 14% of people with a visual impairment say they never or rarely have as much social contact as they like, and feel very or completely cut off from people
• 30% of people with mobility issues say they are always or often lonely
• 74% of people with an Acquired Brain Injury (ABI) say their social life has been affected as a result of their impairment
• 22% of people living with cancer are affected by loneliness.

Loneliness and social isolation are known to negatively impact both on emotional, mental and physical. Weak social connections can be as harmful to physical health as smoking 15 cigarettes a day. Lonely individuals are at a higher risk of increasing disability.

2.4 Employment/ Income and Cost of Living

The Care Act 2014 demands that Local Authorities provide support and services in a way that promotes individual choice and improved wellbeing. For disabled people, improving access to mainstream services, education and employment, will lead to better health, social and economic outcomes as the person is able to live a more connected and meaningful life.

There is a significant difference in economic activity and employment rates between people with and without disabilities ⁵⁶. The national estimates have been applied to the Wandsworth figures in the table below.

Comparison of estimated economic activity of people with and without disabilities in Wandsworth

Source: House of Commons Library, 2020.

When people with disabilities are in employment, they are more likely (34% compared to 23%) to be working part time ⁵⁷.

Median pay is significantly lower for people with disabilities, earning an average of 12.2% less per hour than people without disabilities. The disability pay gap is wider in London than any other area of the country, at 15.3% less being paid to people with disabilities. Nationally, the pay gap for people with disabilities employed as managers, directors or senior officials is the largest, at 13.1%. In addition the pay gap was largest for people aged 30-49 ⁵⁸.

Life costs more for people with disabilities and their families who have to spend, on average, an estimated 47% more than people without disabilities (equivalent to a national average £585 extra per month). One in five disabled people face extra costs of over £1,000 a month ⁵⁹.

3.1 Introduction

The focus of the commissioning model for learning disability services is to reduce reliance on residential care. Service users are provided with supported living and greater independence where possible, with fewer out of Borough placements. In addition, the Council encourages the provision of meaningful daytime activities and life skill development opportunities with stronger pathways towards a measurable outcome. There is a drive to develop and increase employment and supported employment opportunities, increasing the number of people with learning disabilities who are in paid (full or part time) employment, or voluntary roles. The Council wishes to see services that cater for both the younger learning disability population with more complex needs that are transitioning and ageing cohort of people with learning disabilities. Wandsworth Market Position Statement

A learning disability is a reduced intellectual ability and difficulty with everyday activities such as household tasks, socialising or managing money. The NHS defines a learning disability as “the way a person learns new things throughout their lifetime, which means they can have difficulty understanding new or complex information, learning new skills and coping independently”. The severity of learning disabilities exists on a spectrum from mild to profound. At its greatest severity, a profound learning disability leaves a person with multiple disabilities, including learning, sensory and physical impairment ⁶⁰.

Although the two terms are occasionally used interchangeably, a learning difficulty differs from a learning disability. A learning disability is a condition that affects all aspects of life where “a learning difficulty is an obstacle to a specific form of learning but does not affect other aspects of life”.

Learning disabilities are now taking a more prominent position within both national and local agendas. The Care Act 2014 ⁶¹ requires Local Authorities to meet a person’s needs holistically. This encompasses an acknowledgement of the wider determinants of wellbeing, such as employment or socialisation. The Care Act legislation is strengthened by the Mental Capacity Act 2005 ⁶² which protects the right of individuals and their families to make their own decisions.

All people should have the opportunity to be active citizens, live a meaningful life, and make contributions to the community.

To ensure that Wandsworth Council is providing the best outcomes to residents, a Learning Disability Clinical Reference Group ensures that services are the needs of local people. Importantly, the Group includes representation of people with a learning disability and their families. Service implementation is guided by key principles of the Wandsworth Learning Disability Commissioning Strategy 2021-26 that focusses on:

• My Voice is Heard – Coproduction
• Where I Live – Housing and Care Support
• What I Do – Employment and Day Opportunities
• Becoming an Adult – Transition
• I am Fit and Healthy – Improving Health Services
• I have Choice and Control in my Life.

A learning disability occurs when the brain is still developing (before, during or soon after birth) and there are several causal factors including:

• genetic factors
• illness or accident while the mother is pregnant
• lack of oxygen or trauma during birth
• premature births
• early childhood illnesses, accidents or seizures.

Diagnosis of learning disabilities generally occurs in childhood. Mild learning disabilities are mostly commonly diagnosed during school age when issues with reading, writing and numeracy are highlighted. Other issues with socialising may also present. These are often known as ‘hidden’ learning disabilities.

3.2 Prevalence and Level of Need

While the analysis in this section is pre-COVID, it is undeniable that COVID-19 is going to have an impact on the needs of people with learning disabilities in Wandsworth. National evidence shows that 30% of the deaths of people with a learning disability between March and September 2020 were from COVID-19. When the full impact of the pandemic is known, including the potential long-term impacts of the virus, the analysis will be revisited.

National prevalence rates applied to the age-related population in Wandsworth show a predicted increase of 16% in the numbers of the 18-64 population by 2050. However, the increase in the 65+ population is expected to be significantly higher, the table below.

Projections of Wandsworth residents with a learning disability 2020-2050

Source: GLA population estimates & Emerson & Hatton, 2008

Comparing the number of people on the GP Learning Disability Register shows a similar figure to the London average. 49 in every 10,000 people in London are on the GP Register of people with a learning disability, the number in Wandsworth is approximately 48 people. Similarly, the number of people receiving social care services with the primary need of learning disabilities is 33 compared to 32 South West London, as shown in the table below.

Key statistics on learning disabilities in Wandsworth

Source: Public Health Profiles

In 2018-19, there were 829 people aged 18 to 64 years with a learning disability receiving services, and a further 131 people aged 65 and over, as shown in the table below. Direct payments were one of the most common ways to support people with a learning disability in the community, given the emphasis on choice and control.

People receiving social care services for a learning disability

Source: internal figures

The estimated increases to 2050 are based on the estimated population rises of severe and moderate learning disabilities. The number of people in nursing care look low. This is because these figures are based on the primary care need of the person, not on all people with a learning disability. As a person with a learning disability ages, their primary need may become physical health or dementia.

The figure below shows the number of people with a learning disability receiving community based care (left hand side) and accommodation-based care (right hand side) care by age in Wandsworth. People with a learning disability aged 45+ are more likely to be placed in accommodation-based support. More independent accommodation-based care arrangements (supported living and extra care) make up more than half the accommodation-based care placements from 18 to 44. From 45 years, people with a learning disability are increasingly likely to be placed in residential care homes.

People receiving services for a learning disability

Source: Richmond ad Wandsworth Council SSA Adult Social Services Commissioning Division

3.3 What are the Limitations to the Data/Information?

The number of disabled people receiving social care services is relatively small ⁷¹. The analysis of trends and future needs is therefore subject to large margins of error. Much of the data is extrapolated from national prevalence rates and therefore estimates based on the age of Wandsworth’s population, not the specific socio-economic profile of the Borough.

Data collection of learning disabilities only occurs at a point of contact, such as schools, social care or GP practices. People with a learning disability are less likely to be registered with formal services which limits data collection. This leads to people with a learning disability remaining unreached by services and isolated from their community. Before data collection can occur a person with learning disabilities must be registered with formal services.

3.4 Current Services on Offer

Partnerships with the NHS and the vibrant voluntary sector add to the variety of services that support the wellbeing of people with a learning disability in Wandsworth. The Community Learning Disability Health Team (CLDHT) run by South West London and St George’s Mental Health Trust provide a specialist pathway to people with learning disability needs who may have difficulty accessing mainstream services. Specialist services include support of dieticians, dysphagia practitioners and speech and language therapists. One Trust is a registered charity that promotes the wellbeing of people with learning disabilities through day centre support. The organisation aims to ‘maximise the potential’ of all people by tailoring support specifically to the person and their families. In Wandsworth there are services available to ensure the specific health needs associated with learning disabilities are met. Partnerships with the voluntary sector also ensure that people with a learning disability receive holistic services that enable them to lead fulfilled lives.

There are several out-of-borough residential care placements for Wandsworth residents. Moving a person with a learning disability regularly can be disruptive for the individual, family and social networks. The priorities are for new placements is to keep people in-borough, and to bring people back in-borough when possible.

There are 12 residential care homes in Wandsworth designed specifically for people with a learning disability, and another two general needs care homes.

There is one Supported Living and four Housing Support and Preventative Services (HSPS) schemes (some consisting of multiple homes) for people with a learning disability. In addition, some HSPS Support is given as floating support in locations around the Borough.

In Wandsworth HSPS operates as a Block Contract Service in addition to the supported living provisions which are spot purchased. HSPS is a local term which refers to services that would formerly have been commissioned under the Supporting People Programme. Whilst both HSPS and Supported Living provide a range of support to tenants, there are key differences:

• HSPS is not regulated by the Care Quality Commission (CQC).
• Supported Living is not necessarily regulated by CQC, but elements of personal care may be subject to personal care
• HSPS provides housing related support services only and does not include personal care or domestic support

Although the number of units varies over time, there are currently approximately 20 units (the figure below).

Map of accommodation-based support for Learning disabilities in Wandsworth

Source: Richmond ad Wandsworth Council SSA Adult Social Services Commissioning Division

4.1 Introduction

“Our vision in Wandsworth is to raise awareness of the vital roles played by carers and young carers; to collectively provide good quality personalised support to carers, and young carers and those they care for; to build solid networks ensuring that carers and young carers know where to go for information and support; to enable carers and young carers to balance their own lives with their caring roles, and; to ensure that local service providers understand these needs and are committed to working together to meet them.” Wandsworth Market Position Statement

Unpaid carers provide invaluable support to the people they look after, and to health and social care services. However, the life of a carer can be hugely challenging. Carers may be at risk of social isolation, losing employment and education opportunities, as well as caring having a detrimental impact on physical and mental well-being. Carers must remain a high priority for central and local governments to ensure they feel they have choices, respect, and value.

A carer is anyone who provides care to a friend or family member who, because of a limiting long-term condition or addiction, is unable to cope independently. Nationally, it is estimated that the number of carers will increase by 60% to 3.4 million people by 2030 ⁷³. Wandsworth estimates are shown in section 4.3.

The Care Act 2014 and the Children’s and Families Act 2014 recognises the importance of carers and aims to promote their physical and mental well-being. All carers (including young carers and adult carers of children) have a right to a carer’s assessment and relevant support ⁷⁴.

The 2010 National Carers Strategy aimed that by 2018 every carer should be:

• recognised and supported as an Expert Care Partner
• enjoying a life outside caring
• not financially disadvantaged
• mentally and physically well and treated with dignity
• children will be thriving, protected from inappropriate caring roles.

The National Carers Action Plan 2018–20 outlines a range of cross-cutting governmental actions based on five key themes:

• services and systems that work for carers
• employment and financial well-being
• support for young carers
• recognition and support for carers in the wider community and society
• building research and evidence to improve outcomes for carers.

The social, financial and health impacts upon carers can be considerable. People providing unpaid care may be unable to protect their current and future financial security ⁷⁵.

Most of the care is provided by family, friends, and relatives. The care they provide is worth an estimated £132bn per year ⁷⁶. Notably this is more than total spending on the NHS, which was 124.7 billion in 2017/18 ⁷⁷. This equates to an average of £20,300 contribution from each unpaid carer in the UK. If this average was applied to the Wandsworth Carers, it is estimated that they provide over £450 million of care.

Despite the significant contribution carers are making to society and the health and social care system, the 2017 State of Caring Survey found that 73% of carers felt that their contribution was not valued or understood by government. Therefore, it’s vital that carers are given the recognition and support they need to continue to provide care.

As people are living longer with health and social care needs, the gap between the number of carers and the number of people with limiting long-term conditions is increasing. This means:

• an increasing number of people will become unpaid carers with all the increasing attendant needs
• an increasing need for social care support for people without an unpaid carer.

The number of “sandwich carers” (those looking after young children at the same time as caring for the older generation) is expected to rise as are the number of people with ageing parents increases.

4.2 Identification of the Caring Role

The number of carers in the 2011 Census ⁷⁸ compared to the number of carers known to services, indicates there is a gap in identification. Carers often do not recognise their role and only associate with their primary relationship to the person. Most of us will look after an elderly relative, sick partner, or disabled family member at some point in our lives. This invaluable service undoubtedly ensures the continued health, well-being, and comfort of many cared for people. One of the reasons people require social care services is due to unpaid carers becoming unable to continue. Failure to identify carers and offer support at an early stage represents a potential future risk.

Data show three in five people will be a carer at some point in their lives. Women are more likely to be carers, often with multiple caring responsibilities such as for children and elderly relatives. Older people often become carers for their partner ⁷⁹.

The UK 2011 ⁸⁰ census showed the proportion of the population who were carers had increased and evidence and this trend is likely to continue. The number of people aged 65+ is increasing more rapidly than the general population.

83% of carers care for one person. However, 14% care for two people, and 3% are caring for three or more people. The largest group receiving care is parents and parents-in-law (the table below). Carers of older people make up approximately three-quarters of all carers. Middle-aged carers may have dependent children whilst also caring for older parents.

Cared for person by percentage of UK carers

Source: ONS: Census 2011

4.3 Prevalence and Level of Need

Estimated Population Prevalence

The 2011 census ⁹¹ showed there was a total of 19,728 carers living in Wandsworth, 6.5% of the population. This varies by age with:

• 2.1% 0–24 years (1,719)
• 5.7% 25–49 years (9,015)
• 16.7% 50–64 years (5,944)
• 11.8% aged 65+ (3,050).

Carers in Wandsworth are less likely to be in good health than people who provide no care. People who do 50 of more hours of unpaid care each week are much more likely to be in bad, or very bad, health (the table below). 37% of carers in Wandsworth had an appointment with a GP in 2018–19 for an issue related to their caring duties.

Carers in Wandsworth by number of hours of care and self-described health

Source: ONS: Census 2011

While some residents may be caring for people living outside the Borough, there are other people living in the Borough who have carers living elsewhere. There is no data to show that either group has a significant impact on the figures below.

People are living longer with multiple morbidities. The population of Wandsworth is ageing with an estimated increase by 2050 of 87% of people 65+ compared with 16% of those aged 18–64. This is even higher in the 85+ age group which is expected to increase from 9,300 in 2020 to 26,500 in 2050.

Projecting the percentage of carers from the 2011 Census ⁹² on to the estimated population gives an estimate of 22,600 carers in 2020, expected to rise by 30% to 29,400 by 2050. The number of people with long term conditions that limit their ability to do day to day tasks is expected to increase from an estimated 80,600 in 2020 by 54% to 124,000 in 2050 (the figure below). The gap between the number of carers and the number of people with limiting long term conditions is increasing.

Estimated projections of the number of Wandsworth residents with limiting long term illness and residents who are carers

Source: ONS: Census 2011 & GLA population projections

The gap is likely to increase as more of the population becoming carers. This will put more pressure on social care services and the voluntary sector. It is probable some people support will not have access to their own carers.

Carers Receiving Services and Support

There were over 1,100 carers known to Wandsworth Adult Social Care Services in December 2019, and over 4,700 known to the Carers Centre, the table below.

Known Wandsworth carers

Source: Internal figures

An increasing number of residents with caring responsibilities are choosing not to register with the services. In preference, they “dip in and out” when support is required. This reflects one of the challenges noted earlier – many people with caring responsibilities do not recognise themselves as carers or choose not to be labelled as a carer.

Deprivation

The percentage of residents who provide unpaid care is associated with deprivation. Wandsworth has pockets of deprivation and pockets of affluence. Some areas are amongst the least and most deprived in the country ¹⁰⁵ (the figure below).

Southfields, Thamesfield and Northcote, have areas counted in the least deprived (20%) of the country. Latchmere has areas that are amongst the most deprived. Level of carer need is, therefore, likely to be higher in these more deprived areas compared with more affluent areas. There are carers living throughout the Borough but the highest proportion of the population who are carers are living in West Putney and Furzedown. There are also families and individuals throughout other parts of the Borough who are experiencing above average levels of deprivation and greater needs ¹⁰⁶.

Deprivation in Wandsworth

Source: IMD, 2019

4.4 Cared for Person

Nationally, according to the Survey of Carers in Households, the most common conditions amongst people that are looked after by unpaid carers include ¹⁰⁷:

• physical disability (58%),
• sight or hearing loss (20%),
• mental health problems (13%),
• learning disability (11%)
• dementia (10%).

The conditions of cared for people often dictate the types and duration of caring activities.

This breakdown does not fully represent all the care requirements. Autism spectrum disorder is included within the category of learning disability, despite those with autism requiring significantly different care and support than others within this group. There is no category for those with multiple long-term conditions, they would be included in the category of their most debilitating condition.

The absence of a specific statistical breakdown for conditions such as autism, or for those with multiple morbidities, has implications for the commissioning and delivery of services tailored to individuals’ requirements.

Most carers provide care for older people. In 2020, 10% of Wandsworth residents were aged over 65 years. A vast majority of older people live in the community, (96.6% were aged 65 years,93.7% aged 75 years and over ,ONS, 2011). The percentage of people over 65 years in Wandsworth is projected to increase to 14% in 2050 ¹⁰⁸.

4.5 Limitations to the Data

The true prevalence of caring can only be estimated due to the invisibility of some carers within communities. A proportion of carers will not identify themselves as a carer as they see themselves as simply completing their duties. Groups where identification is low includes parents and sandwich carers. Young carers may be reluctant to identify themselves for fear of repercussions.

There are gaps in the understanding of the needs of carers of autistic people and co-morbidities, and those carers who are in employment. Further development of the assessment process should include how to manage expectations and how to improve access to universal support services.

4.6 Current Services

Carers Partnership Wandsworth is the main provider of local carer support services. It is made up of four partners who work together, and with other agencies, to provide high quality services.

The four partners are:

• Wandsworth Carers Centre
• Alzheimer’s Society (SW London Branch)
• Bluebird Care Wandsworth
• Carer Representatives.

The services provided include:

• Information, advice, and advocacy
• Peer support
• Carer’s respite
• Back care and therapies
• Health and social care liaison and training.

Young carers (children and young adults) have the same right as other children to enjoy life as fully as possible. Young carers may have different needs to other carers. Specific services for this group in Wandsworth include:

• Carers Trust
• Children’s Society
• Youth Legal.

In addition, other services that can benefit carers, especially those struggling to balance their own needs with their caring role, include:

• GP surgeries

  • annual carers consultation
  • a register of all patients identified as carer
  • referrals to Wandsworth Carers Centre
  • annual flu vaccinations for all registered carers

• Community pharmacies

• Dental practices

• Special Care Dental Service is available for adults and children with complex needs who have difficulty in getting treatments in a local dental practice for reasons other than cost

• Community health services

  • complex case management
  • facilitating independence
  • scheduled and ongoing care
  • specialist input

• Wandsworth Well-being Hub

  • Advice and support for ongoing conditions.

The Carer Assessment Process enables people to move between services. A personal improvement plan is created to increase the number assessments, address key requirements, ,manage expectations, and record objectives and outcomes. In addition, training on best practice and legal requirements relating to carer assessments is available.

Current young carer recording mechanisms are not synchronised and fail to indicate the total number of young carers through the Single Point of Access (SPA) scheme. Therefore, a review of the systems and pathways for young carers is being conducted to improve the identification of young carers.

Planning for the expected increase in carers will be a Wandsworth priority.

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References Physical & Sensory Impairment/Disabilities

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References Learning Disabilities

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