Summary of the research used to underpin the framework

9.1 Introduction to summary of research

The outcomes and improvement framework is underpinned research into the causes of the inequality and poor quality of life outcomes experienced by adults with learning disabilities and autism (learning disability and/or autism).

In 2015, around 2.16 per cent of adults in England were recorded as having a learning disability (Hatton C, Glover G, Emerson E, Brown I. Learning Disabilities Observatory. People with Learning Disabilities in England 2015: Main Report. London; Public Health England: 2016). Based on Office for National Statistics (ONS) estimates for 2020 this is around 777,000 of all people aged 15 to 64. People with a learning disability often experience inequalities when accessing their local community, seeking employment, and using public services including health care, social care, housing, criminal justice, and welfare. The impact of this inequality is apparent in many outcomes see side bar including having a shorter life expectancy, below average quality of life and having disproportionately high deaths rate during the COVID-19 pandemic. (CQC data published 2 June 2020 showed that between 10 April and 15 May 2020 the number of deaths of people with learning disability, some of whom may also be autistic, was 134 per cent higher than in the same period in 2019.)

A good source of evidence about the inequalities experienced by adults with learning disabilities is: Cantrell A, Croot E, Johnson M, Wong R, Chambers D, Baxter SK, Booth A. Access to primary and community health-care services for people 16 years and over with intellectual disabilities: A mapping and targeted systematic review. Health Service Delivery Res 2020;8(5).

Around 1.1 per cent of the population are people with autism (The Autism Dividend - Reaping the rewards of better investment (2017) by Valentina Iemmi, Martin Knapp, and Ian Ragan, for the National Autism Project). Based on ONS estimates for 2020 this is around 396,000 of all people aged 15 to 64. About a third of these also have an intellectual or a learning disability. Therefore about 1,040,000 of people aged 15 to 64 in England in 2020 live with either a learning disability, autism or a learning disability and autism. Like adults with learning disabilities adults with autism experience inequality far more than the general population. The impact of this inequality is apparent in outcomes such as people with autism being more likely to be:

• excluded from schools
• receiving poor healthcare
• underemployed
• poorly served by the criminal justice system.

Evidence of inequality

The Learning Disabilities Mortality review- Annual Report for 2018: HQIP (2019): Life expectancy for adults with a learning disability is 59 (Female) and 60 (Male). This is 23 years and 29 years less respectively than for the overall population. Genetic/biological determinants only partially account for these differences.

In 2015 The Health Equalities Framework: People with a learning disability living in supported accommodation are less likely to eat a balanced diet (only 10 per cent do) and 80 per cent take less physical activity than is recommended. They also participate less in health promotion or screening activities. ASCOF indicator 1e for 2018-19: Just 5.9 per cent of adults with a learning disability aged 18 to 64 and known to councils are in paid employment (Males 6.4 per cent, Females 5.2 per cent).

NHS England (2016) reported that 7 per cent of prisoners have ‘learning disabilities/difficulties’ i.e. people with a learning disability are over-represented in the prison population.

The Autism Dividend (2017) by the National Autism Project reported that people with autism:

• are at a much higher risk of suicide.
• want to work (70 per cent), but only 16 per cent of are in full time employment and two thirds are not employed at all.
• are far more (60 per cent) financially dependent on their family than the general population.

9.2. The causes of inequality/poor outcomes experienced by adults with learning disabilities

For example, the Health Equalities Framework v2.0, © Atkinson, Boulter, Hebron & Moulster (2015) presents detailed evidence reported by the Public Health Observatory that shows there to be five clearly discernible determinants of the health inequalities commonly experienced by people with learning disabilities.

It concluded that the greater their exposure to these determinants the greater the likelihood they would experience otherwise avoidable negative outcomes. The consequences of these inequalities are significant and include premature mortality, increased experience of ill health and impoverished quality of life. Understanding these key determinants is helpful as councils can use this knowledge to plan how to address the determinants at whole population level and for individuals with learning disability and/or autism.

There are significant numbers of people with learning disability and/or autism have contact with the criminal justice system, include many in prison. Research shows that the experience of the criminal justice system is bewildering and frightening and that many reported feeling isolated because of their disability (Experiences of people with learning disabilities in the criminal justice system. British Journal of Learning Disabilities, 42(4), pp 308-314). Many people with learning disability and/or autism did not know why they had been arrested and did not understand that arrest may lead to imprisonment. Many also said that they did not understand the questions put to them during police interrogation or that anything they said may be used as evidence against them in court proceedings. People with learning disability and/or autism are also frequently excluded from programmes aimed at preventing re-offending.

It is important that the needs of people with learning disability and/or autism who are offenders, or accused of offences, are recognised, and supported in the criminal justice system, by the wider care and support system.

9.3 How to address inequality/poor outcomes experienced by adults with learning disabilities

The 2020 report Access to primary and community health-care services for people 16 years and over with intellectual disabilities - A mapping and targeted systematic review are important. This research, although related to health care, is relevant as most of it easily reads across to social service. In summary it found that improving outcomes for adults with learning disabilities was dependent on three key stages:

1. timely and accurate identification of support needs
2. having access to the right services
3. the quality of interactions during consultations.

Together these reflect a simple pathway to enabling individuals to have access to the right support at the right time, be it: health, social or any other type of support.

The nine key access factors that need to be considered by councils when they provide systems leadership and when they plan, commission, deliver or enable support for adults with learning disabilities are listed below. Interestingly the research found that the key access factors were common to more than one stage and, in most cases, relevant to all three stages in the access pathway.

Nine key access factors

• 1. Availability of support – From social service providers, relatives, and other paid/unpaid supporters.
• 2. Consistent person/people providing care/support – Enable long-term relationships with the person.
• 3. Adequate training for supporters – Training for social service providers and all other paid supporters.
• 4. Effective communication within services – Close teamworking, sharing knowledge of the client etc. to minimise gaps between what different supporters do.
• 5. Effective communication between services – NHS and social services, formal and informal carers etc. to join care and support up.
• 6. Accurate record keeping – To facilitate effective and joined up care and support and to provide accurate aggregated data to inform planning.
• 7. Communication skills of all who interact with people with learning disabilities – To tailor approaches in line with each individual’s needs/choices
• 8. Appropriate use of accessible resources – Including the use of pain recognition and communication aids/tools.
• 9. Time – Enough time to communicate and work effectively with people with learning disabilities e.g. during assessments/reviews and when support is being provided etc.

The three key stages in the access pathway:

1. timely and accurate identification of support: needs
2. having access to the right services
3. the quality of interactions during consultations.

9.4 How to address inequality/poor outcomes experienced by adults with autism

For adults with autism the findings of the 2017 report The Autism Dividend - Reaping the rewards of better investment (2017) are also relevant. In addition to recommending that more autism specific research is needed the authors made nine policy recommendations to improve how adults with autism are supported. The recommendations were underpinned by four principles (see side bar) that councils should consider when providing systems leadership and when they plan, commission, deliver or enable support for autistic people. The nine recommendations were to:

• 1. Ensure timely identification and diagnosis – Early access to specialist support can have benefits for the rest of the person’s life i.e. outcomes and sometimes lower support costs.
• 2. Provide evidence-supported interventions – As identification/diagnosis will only help if effective services exist to provide the tailored, person centred support the person needs.
• 3. Make the economic case for intervention – As the outcomes achieved need to be important enough to justify the resources used.
• 4. Remove barriers to access to education, employment, health, and other opportunities – As people with autism have more health problems and less employment than other people.
• 5. Tackle environmental and other stressors – Without local support to tackle this people with autism will continue to be placed out of area in residential or hospital settings.
• 6. Fight stigma and discrimination – Access to services and other opportunities is affected by many things, incl. attitudes. The public and professionals needs to better understand autism.
• 7. Ensure better life transitions – Plan for known transitions e.g. Children’s to adult services and have contingency plans for unknown transitions e.g. a carer being unable to continue.
• 8. Co-ordinate action across sectors – To avoid wasteful duplication and to avoid gaps between systems through which people might fall, with distressing/costly consequences.
• 9. Build better information systems – As better information underpins many of the other recommendations such as coordination of action across different services or planning better for transitions and making the economic case for interventions.

Taken together the nine recommendations show that to tackle inequality for adults with autism and to support them to achieve better quality of life and other outcomes; councils need to think beyond what adult social care alone does and how it does it. For example; they need to think about providing systems leadership, community development and workforce development as well as professional practice and how to commission efficient and effective care and support services.

9.5 Research helps us understand how to design care and support services to improving quality of life outcomes

There is a large body of academic research into how to best support adults with learning disability and/or autism to have a good quality of life (QOL).

Quality of life is the degree to which an individual is satisfied with his or her life or perceives his or her life as “good.” Schalock’s conceptualisation of Quality of life is measured by eight domains: Social Inclusion, Physical Well-Being, Interpersonal Relations, Material Well-Being, Emotional Well-Being, Self-Determination, Personal Development, and Rights.

A full appraisal of it would warrant a separate publication. Our summary of the consensus is that on balance the research demonstrates that individuals with learning disability and/or autism living in the community, experience a better QOL, compared with individuals living in segregated institutional settings. It also tells us four key things that councils can influence that impact on the quality of life experienced by the people they arrange care and support for. 

• 1. The characteristics of who you live with e.g. their age, gender, needs, strengths, adaptive and/or challenging behaviour impact QOL. Consideration of compatibility with others is a key when care, support and accommodation is being arranged.
• 2. The support approach/ethos you experience e.g. the more normalised the physical setting, staff, and daily routines are (as opposed to institutionalised) the better QOL is likely to be. When Commissioning support councils should seek community settings whenever they are feasible and affordable.
• 3. The people who support you e.g. when they have high expectations for the person they support, are knowledgeable and interact constructively with them QOL is positively influenced. Matching staff with the people they support and training them well are key considerations.
• 4. The number of people you live with e.g. smaller households facilitate better QOL outcomes. People living in homes with three or fewer others experience greater instances of personalised support and safety and enhanced social networks, and those living with four or fewer others experience enhanced personal control.

9.6 What experts by experience told us good looks like

Scott Watkins (13/03/20) said the underlying principles should be for DASS’s should be Equality, Accessibility and Inclusivity NOT just paid for services, and that for this to happen the “System” needs to work in partnership (co-productively) with adults with learning disability and/or autism

He also said what good look like to him. It was as follows:

• Good services greet you well … focus is immediately on person supported not Scott
• Good services are not “over” protective
• Good services help people build networks to initially supplement paid for support/care and eventually fully or partially replace it
• Good services are clear the setting is the person’s home NOT a service, a unit etc. and choice and control is theirs NOT the staffs
• Directors should visit services to know what services are doing to:
  • manage cultures and see evidence about values, beliefs etc. that are in line with desired culture
  • pass power to the people supported and see evidence they have choice and control
  • be person centred rather than “service” led
  • be co-productive and see evidence it is the norm

At interview Emma, aged 20, told us that the things that matter to her are:

• Being able to do things she likes doing, such as going out, drawing, playing video games
• Having friends
• Working towards living on her own
• Being supported by someone who understands what she needs
• To have consistency and stability in her life
• Important to find the right place, where her needs were understood, she felt listened to and where she could understand why people might get upset with her. 
• Important to be supported by people who understand behaviour that may sometimes challenge
• To have a routine.

Claire Bennett (mother to Kieran aged 21 with learning disability and significant medical needs) identified the things that had been helpful to her. Kieran and her family;

• Being able to have a relationship with a transitions worker over a period of time and having conversations helped her to see things in a different way
• A transitions worker with local knowledge and connections
• A relationship with school
• The ability to choose what was right for her son and for family
• Allowed to be in control
• Being able to speak with another parent, who could give the perspective of an expert by experience

A transitions worker identified strengths-based approach as being of great importance in effecting change

Ria (aged 21) talked to us about her experience of the transitions process. She stressed the importance of letting the young person set the pace, which may be slow and of having a trusting relationship with the transition social worker, that is built over time. Ria also told us that local authorities should make special arrangements for young people with a learning disability who were previously looked after children. Whilst they may have support up to age 25, followed by access to a learning disability team for adults, as would any person with a learning disability, this does not provide the supportive relationship that would be expected from a family. She would like to have a close relationship with a social worker to support her beyond 25 years of age.

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Conclusions: how the research informs the outcomes and improvement framework

The research shows that to enable people with learning disability and/or autism to have good lives and to keep themselves safe Councils need to have regard to far more than the traditional areas of assessment and care management, commissioning and safeguarding. This means that each DASS and their partners need to consider how they can best:

• Provide systems leadership – This is vital as the levers for tacking many of the causes of inequality/poor outcomes are not under the direct control of councils i.e. they need to influence and work with others, co-ordinate, and take joint actions to make a positive difference.
• Forecast future demand accurately: This is crucial as putting early intervention/transition services in place requires knowledge about children with learning disability and/or autism as many will need support as adults.
• Implement effective care/support services in partnership with the NHS and other sectors: This is important to ensure care, support and treatment is personalised, life-long, joined up, and least restrictive. It is also essential to ensure that choice, quality, and capacity are all sufficient and that urgent responsive and safeguarding services supplement and support longer term arrangements.
• Develop community capacity: This is essential as many inequalities and environmental stressors arise from communities not being fully accessible to, tolerant of or safe for people with learning disability and/or autism.
• Operate efficient and effective systems and processes: Systems and processes should be reasonably adjusted to be accessible for adults with learning disability and/or autism and provide accurate data is to inform demand forecasts, service plans and to enable the co-ordination of care, support and treatment.
• Develop the local workforce: This is a key enabler as having a workforce with the capacity and capability work skilfully with adults with learning disability and/or autism helps ensure that services demonstrate the features of a good or desirable services.

A service that is seen as ‘good’ or ‘desirable’ to at least some people could be one that responds promptly to needs, or one that emphasises the individuality of the person and as far as possible takes account of their preferences. It might be seen as ‘good’ because it is effective in meeting those needs and improving wellbeing, or because decisions are shared and those outcomes are co-produced. It might ensure that individuals are supported with dignity, or that family strengths or community solidarities are not undermined. It might promote social inclusion18. It might support autonomy, but without leaving any individual exposed to unreasonable risk of harm or excessive stress. It might respond to differences in gender, age, ethnicity, language, religion, culture, sexual preference or socio-economic group in ways that are not discriminatory or unfair. It might make efficient use of scarce resources.”

Source: Autism Dividend - Reaping the rewards of better investment (2017), p28, By Valentina Iemmi, Martin Knapp, and Ian Ragan, on behalf of the National Autism Project.

Summary of the outcomes and improvement framework

Enabling good outcomes and a good experience for adults with learning disability and/or autism requires councils to:

• provide systems leadership, governamnce and management arrangements
• understand demand and use prevention and early interventions effectively, including transitions
• enable a care and support system that supports adults with learning disability and/or autism to have a good quality of life
• develop the local workforce to have the capacity and capability needed to support adults with learning disability and/or autism well
• support adults with learning disability and/or autism to stay safe, ie live the lives they want to
• operate efficient and accessible business systems and processes that ensure value for money.

Evidence of inequality

The Learning Disabilities (a learning disability) Mortality review- Annual Report for 2018: HQIP (2019): Life expectancy for adults with a learning disability is 59 (Female) and 60 (Male). This is 23 years and 29 years less respectively than for the overall population. Genetic/biological determinants only partially account for these differences.

In 2015 The Health Equalities Framework: People with a learning disability living in supported accommodation are less likely to eat a balanced diet (only 10 per cent do) and 80 per cent take less physical activity than is recommended. They also participate less in health promotion or screening activities.

ASCOF indicator 1e for 2018-19: Just 5.9 per cent of adults with a learning disability aged 18-64 and known to councils are in paid employment (Males 6.4 per cent, Females 5.2 per cent).

NHS England (2016) reported that 7 per cent of prisoners have ‘learning disabilities/difficulties’ i.e. people with a learning disability are over-represented in the prison population.

The Autism Divide (2017) report by the National Autism Project reported that: People with autism:

• Are at a much higher risk of suicide.
• Want to work (70 per cent), but only 16 per cent of are in full time employment and two thirds are not employed at all.
• Are far more (60 per cent) financially dependent on their family than the general population.

Determinants of the health inequalities

• Social determinants such as poverty, poor housing, unemployment
• Genetic and biological determinant: Genetic and biological conditions, physical and mental health problems specifically associated with learning disabilities.
• Deficiencies in access to and the quality of health provision: Such as services failing to take account of peoples’ abilities and disabilities leading to barriers to them accessing healthcare and other services e.g. lack of appropriate services; physical barriers to access; eligibility criteria for accessing social care; lack of reasonable adjustments and diagnostic overshadowing.
• Personal health behaviour and lifestyle risks: Personal health behaviour (incl. behaviours that challenge) and lifestyle risks such as diet, sexual health, exercise.
• Communication difficulties and reduced health literacy such as a reduced ability to take in, understand and use healthcare information to make decisions and follow instructions for treatment etc.

Four principles that should underpin policy recommentations to improve how adults with autism are supported

• Principle 1: Personalised actions - Recognising people’s individual characteristics, different needs and individual preferences.
• Principle 2: Choice and control - Balance the wish of many people with autism to have greater autonomy with effective support structures.
• Principle 3: Addressing inequalities – Build public understanding of autism, reduce inequality in access to health, education, employment.
• Principle 4: A life-long perspective - Ensuring early identification and evidence-based interventions in childhood and all other stages of life.

Source: The Autism Dividend - Reaping the rewards of better investment (2017), p28, By Valentina Iemmi, Martin Knapp, and Ian Ragan, on behalf of the National Autism Project

What experts with experience said was important to them

At In Group interviews Em said that:

• Good support is important
• People providing support and advice need to be able to put themselves in shoes of people with a learning disability
• If support is shared, everyone should get what they are entitled to
• Important for people to be in control of their own lives
• It is important to have answers to questions
• People with Learning disability can be used to test the quality of services, for example – the Leeds Good Lives Leaders scheme

Peter said:

• Listen to me
• Be available to me
• Be flexible

Bernie said the following are important:

• Learning disability awareness training - not just for support staff, but others too – for example bus drivers
• People with a learning disability should be employed as trainers
• Training should be certificated – provided by badged trainers

In Group interviews

Kenny said he wanted:

• To be listened to
• People providing support to be patient
• People providing support to be able to cope with upset

John said that it can be difficult to access services when they are needed, for example to speak to a social worker or an OT. The referral process is difficult and there can be long waits. These are things that need to change.

Ian felt that it was important to have different ways of getting information

Gavin said it was important:

• To have help to eat healthily
• For services to be delivered on time
• For bus drivers to have a learning disability awareness training

How we gathered these views: The views of experts by experience were gathered from a series of individual and group interviews conducted by video conference. We would like to thank the following organisations for introducing us to the people who participated in the interviews and helped set them up notably Learning Disability England; Leeds City Council Social Services; and Leeds Advonet.

Quotes at the national reference group held on 26 February 2020

Effective support models are ones where the aim of support providers is to “do themselves out of a job”. This needs to be recognised in how commissioner build relationships with providers and respond to a throughput-based, rather than an indefinite support-based model.” 

Short-term intensive support that may be costly can be a good investment if it leads too long-term quality of life outcomes, increased independence and lower costs of support.” 

Social Care funding should be seen as an investment in an individual to support them to achieve their greatest potential. It is not a compensation for disability”.

Long-term support should be progressive and Strengths based conversations should be included in the Transitions process, with an emphasis on “Progression” from Year 9/age 14.”

All professional practice should be outcomes focused.”

Carer's support (for the invisible workforce) is crucial.”