Coming Home implementation report: equality impact assessment
Record of the Equality Impact Assessment (EQIA) carried out in relation to the policy development of the Coming Home Implementation Report recommendations for people with learning disabilities and complex care needs.
Data and Evidence Gathering
Methodology
The likely effects of the policy were informed by an analysis of a range of published evidence, policy development and research and various pieces of stakeholder engagement. This includes building off the work of a detailed lived experience engagement exercise conducted during the EQIA of the Scottish Government's Towards Transformation Plan in 2021.
Key Findings
Age
Existing Evidence
The Coming Home Report collected age demographic data. There appears to be a relatively even spread of people with complex care needs across ages, although there are fewer people with complex care needs above the age of 55. Similarly, the age group 18-21 appears to show an over-representation of individuals. The Coming Home report did not collect data on under 16s.
The 2022 Mental Health and Learning Disability Inpatient Census reporting specifically on out of NHS Scotland placements identified 162 patients funded by NHS Scotland receiving treatment outwith NHS Scotland. 58% were aged under 65. One in four patients (25%) were aged under 40.
The Scottish Learning Disabilities Observatory (SLDO) research into life expectancy and causes of death of people with learning disabilities shows that people with a learning disability have a significantly lower life expectancy than the general population and that people with co-occurring conditions and complex care needs have an even shorter life expectancy. (SLDO, 2016)
Examining wider evidence for people with learning disabilities, NHS Health Scotland research shows people with learning disabilities die on average 20 years earlier than the general population, often from preventable diseases. (NHS Health Scotland 2017) However, advances in the mean life expectancy for people with learning disabilities from an estimated 18.5 years in the 1930s to 66 years in the 1990s (Bradock 1999, cited in British Psychological Society 2015) means that more consideration has to be given to the impact of aging on people with learning disabilities. We would however expect to see fewer people with learning disabilities and complex care needs surviving into older age.
Currently most people with learning disabilities do not marry and/or have children. Parents of learning disabled children frequently continue to care for their adult children into older age, which can result in a mutually dependent relationship, often complicated by poor future planning and lack of appropriate support (Ryan et. al 2014).
There is no available data on children and young people with learning disabilities and complex care needs.
The Fraser of Allander 2021 report highlighted that the transitions support system in Scotland could be improved. (Fraser of Allander, 2021)
These reports take small sample numbers and include cohorts of individuals outwith the 'learning disabilities and complex care needs' definition.
Some variation in figures is to be expected, however this evidences the challenge in no ongoing bespoke data collection for people with learning disabilities and complex care needs.
Action Taken
Dynamic Support Registers will capture data on age according to protected characteristic data collection standards. We will monitor this data on an ongoing basis.
We will scope and assess the impact of these policies on Children and Young People and, if the evidence supports this, consider expanding the Dynamic Support Register to cover all age groups.
Disability
Existing Evidence
We know that people with learning disabilities face significantly longer waits for discharge to community settings once clinically ready for discharge, in comparison to the national average. NHS Scotland Delayed Discharge data for April 2022 evidenced an average length of delay of 22 days (Public Health Scotland, April 2022), whereas , the 2022 Mental Health and Learning Disability inpatient census evidences an average length of stay of 1,564 days in a Learning Disability Unit (Scottish Government, 2022). We know that this is a long-term trend and reports such as the Mental Welfare Commission No Through Road and Coming Home Implementation Report highlight it as an ongoing issue.
Learning Disabilities are considered a disability under the terms of the Equality Act 2010. The Coming Home report identified that more than one third people identified as learning disabled also have a co-occurring autism diagnosis (37%), which is also considered a disability under the terms of the Equality Act 2010. The Coming Home Implementation Report definition of Complex Care includes the presence of multiple or co-occurring physical disabilities. There is significant intersectionality across disability. The 2022 Inpatient census reported 53% (1,510) of adult patients with at least one physical health co-morbidity.
The review of evidence in mental ill health and behaviours that challenge in adults with learning/intellectual disabilities published by SLDO, evidenced mental ill health as significantly more prevalent in adults with learning disabilities than in the general population and flags significant gaps in data around people with learning disabilities and complex care needs (SLDO, 2022). Learning disabilities are also associated with sensory impairments and physical disabilities (Kinnear et. al 2020). It is also recognised that people with learning disabilities may have higher rates of mental ill health (Osugo & Cooper 2016).
The 2011 Scottish Census reported that 21.7% of people with intellectual disabilities also had autism and 18.0% of people with autism also had intellectual disabilities. People with this 'dual diagnosis' were found to be more likely to have a mental health condition, physical disability, be blind or deaf (Dunn et. al. 2020).
NICE guidelines recognise that mental health problems are commonly experienced by people with learning disabilities, and are often comorbid with other mental health problems, epilepsy, other physical health problems, and sensory impairments (NICE, 2015).
The 2022 Mental Health and Learning Disability Inpatient Censusreports 162 patients who were funded by NHS Scotland were receiving treatment outwith NHS Scotland. 20% had a learning disability or autism diagnosis. Dementia, schizophrenia and personality disorder were the other common diagnoses of people treated outwith NHS Scotland (Scottish Government, 2022). This data only pertains to individuals funded by NHS Scotland – there is limited data available on people living in social care out-of-area placements. The 2019 Learning Disability Statistics Scotland highlights that across all local authorities that supplied data, there are 1,011 adults (4.3% of all adults) with learning disabilities who are in receipt of an out-of-area placement. Further demographic analysis of this data was not available. (SCLD, 2019)
These reports either take small sample numbers or include cohorts of individuals outwith the 'learning disabilities and complex care needs' definition.
As stated above, although some variation in figures is to be expected, this evidences the challenge caused by the lack of bespoke data collection for people with learning disabilities and complex care needs.
Action Taken
We committed to taking forward the Coming Home Implementation work which is focussed on addressing the specifically tailored to the needs of people with learning disabilities and complex care needs.
The Dynamic Support Register is specifically designed to capture bespoke data for the improvement of care and treatment on people with learning disabilities and complex care needs. We will monitor this new national data on an ongoing basis.
Key recommendation 5 of the Coming Home Implementation Report commits the Scottish Government to undertake further work to explore the issues in relation to people with enduring mental health conditions who are subject to delayed discharge from hospital. The Scottish Government, taking a phased approach to this work, commits to undertake this further work once the Dynamic Support Register, Peer Support Network and National Support Panel are evidenced to be an effective measure in reducing delayed discharges and out-of-area placements for people with learning disabilities and complex care needs.
We will scope and assess the impact of these policies on people with enduring mental health conditions and wider disability and, if the evidence supports this, develop policy further to ensure equitable impact upon disability.
Sex
Existing Evidence
The sex profile of people with learning disabilities is different to the general population. We know that there are more males with learning disabilities in Scotland than females. There is a clinical rationale for this as a gene mutation on the X chromosome that causes a genetic disorder likely to lead to a learning disability, is more probable in males who typically only have one copy of the X chromosome than in females who typically have two.
The 2019 Learning Disability Statistics Scotland shows that of all adults with learning disabilities who are known to Local Authorities, 59.3% are men and 40.6% are women.
The 2018 Coming Homereport identified that the complex care population in Scotland is 63% male. Within the 2022 Mental Health and Learning Disability Inpatient Census, 59% of patients were male, among those aged 18 - 39 years this increased to 68% of patients. (Scottish Government, 2018)
The 2022 Mental Health and Learning Disability Inpatient Census,reporting specifically on out-of-NHS-Scotland placements, also identified more male patients (59%) than female (41%).
Wider research on people with learning disabilities indicates that life expectancy is broadly similar for males and females with learning disabilities, contrary to the widely observed phenomenon that females live longer on average than males, suggesting that females with learning disabilities could be at higher risk of premature mortality (Heslop et.al. 2015).
A UK national cohort study found that premature mortality for girls and young women with learning disabilities was 17 times higher than their peers without learning disabilities. When sex is not accounted for, premature mortality is 12 times higher for children and young people with learning disabilities than their peers without learning disabilities. (Smith, Fleming, Kinnear, et.al 2020).
These reports either include small sample numbers, or include cohorts of individuals outwith the 'learning disabilities and complex care needs' definition.
Variation in figures is to be expected, however this again evidences the challenges that arise from the lack of bespoke data collection for people with learning disabilities and complex care needs.
Action Taken
Dynamic Support Registers will capture data on sex according to protected characteristic data collection standards. We will monitor this data on an ongoing basis.
We will scope and assess the impact of these policies on sex and, if the evidence supports this, develop policy further to ensure equitable impact upon sex.
Gender Reassignment
Existing Evidence
There is no data available on people with learning disabilities and complex care needs and gender reassignment.
There is very little research on people with learning disabilities and gender reassignment.
A 2010 study indicated that gender identity disorder may be more common in people with learning disabilities (Bedard 2010), although this data also included people with autistic spectrum disorders. The same study found that people with learning disabilities are often viewed as 'incompetent' to make decisions, especially related to their sexuality and specifically regarding their gender identity.
A clinical study which reviewed 13 case records of people with learning disabilities who had been referred to a gender dysphoria clinic found a high level of mental health problems in the group (Parkes et. al. 2009).
Action Taken
Dynamic Support Registers will capture data on gender reassignment according to protected characteristic data collection standards. We will monitor this data on an ongoing basis.
We will scope and assess the impact of these policies on gender reassignment and, if the evidence supports this, develop policy further to ensure equitable impact upon gender reassignment.
Pregnancy and Maternity
Existing Evidence
There is limited data available on people with learning disabilities and complex care needs and pregnancy and maternity.
SCLD's 2016 report Supporting Parents with Learning Disabilities in Scotland: Challenges and Opportunities highlights there is limited information available on the numbers of parents with learning disabilities in Scotland and data extrapolation suggests it is likely that there are around 5,000 parents with learning disabilities in Scotland. (SCLD, 2016)
Action Taken
Dynamic Support Registers will capture data on pregnancy and maternity according to protected characteristic data collection standards. We will monitor this data on an ongoing basis.
We will scope and assess the impact of these policies on pregnancy and maternity and, if the evidence supports this, develop policy further to ensure equitable impact upon pregnancy and maternity.
Race
Existing Evidence
There is limited data available on people with learning disabilities and complex care needs and race.
The 2019 Learning Disability Statistics Scotland identified that of adults with learning disabilities known to local Authorities, 84.9% were white, 1.2% identified as Asian, Asian Scottish, Asian British ethnicity. 13.1% were not known or disclosed.
Data from the Mental Health and Learning Disability Inpatient Census 2022 shows the majority of patients (92%) identified as white (73% as white Scottish, 19% as Other White). 2% identified as Asian, Asian Scottish or Asian British patients. 1% identified as African, African Scottish or African British.
The prevalence of all learning disabilities in minority ethnic communities is at least as high as in white groups (McGrother, Bhaumik, Thorp, Watson, & Taub, 2002). It has been reported that some South Asian communities in the UK have a prevalence rate for more severe learning disability up to three times higher than other communities. (Emerson et al., 1997)
Figures from the English Learning Disability Mortality Review program (LeDeR, 2019) showed that the median age of death is substantially lower for people from minority ethnic communities in comparison with their white counterparts (35 years vs 61 years).
These reports include cohorts of individuals outwith the 'learning disabilities and complex care needs' definition. This evidences the challenge caused by the lack of specific data about people with learning disabilities and complex care needs.
Action Taken
Dynamic Support Registers will capture data on race according to protected characteristic data collection standards. We will monitor this data on an ongoing basis.
We will scope and assess the impact of these policies on race and, if the evidence supports this, develop policy further to ensure equitable impact upon race.
Sexual Orientation
Existing Evidence
There is no data available on people with learning disabilities and complex care needs and sexual orientation.
There is very little existing data available on people with learning disabilities and sexual orientation.
Paternalism, heteronormativity and discriminatory attitudes have been found to exist within support services (Jukes & Aldridge 2006).
Often, support staff also lack confidence to discuss sexuality issues (Abbott & Howard, 2007). The same study found that staff tend to presume an 'asexual' status of people with learning disabilities.
Other studies have found that service providers often ignore sexuality concerns, making people 'feel invisible' in relation to their gay identity (Stoffelen et al., 2013).
Studies have also found that people with learning disabilities lack knowledge of LGBT issues and hold negative beliefs and attitudes towards people who are LGBT, which could lead to denial of sexual identity and internalised homophobia (Burns & Davies, 2011).
These reports include cohorts of individuals outwith the 'learning disabilities and complex care needs' definition. This evidences the challenge caused by the lack of bespoke data collection for people with learning disabilities and complex care needs.
Action Taken
Dynamic Support Registers will capture data on sexual orientation according to protected characteristic data collection standards. We will monitor this data on an ongoing basis.
We will scope and assess the impact of these policies on sexual orientation and, if the evidence supports this, develop policy further to ensure equitable impact upon sexual orientation.
Religion or Belief
Existing Evidence
There is no data available on people with learning disabilities and complex care needs and religion or belief.
Action Taken
Dynamic Support Registers will capture data on religion or belief according to protected characteristic data collection standards. We will monitor this data on an ongoing basis.
We will scope and assess the impact of these policies on religion or belief and, if the evidence supports this, develop policy further to ensure equitable impact upon religion or belief.
Marriage and Civil Partnership
Existing Evidence
There is no data available on people with learning disabilities and complex care needs and marriage and civil partnership.
SCLD research into SCLD-Relationships-Report-Final.pdf">exploring people's (with learning disabilities) experience of relationships, social isolation and loneliness found only 3% of respondents were married compared to 47% of the general population.
Data from the Mental Health and Learning Disability Inpatient Census 2022 shows more than half (55%) of patients in the 2022 Census had never been married nor registered in a civil partnership.
Both these reports include cohorts of individuals outwith the 'learning disabilities and complex care needs' definition, evidencing the challenge caused by the lack of bespoke data collection for people with learning disabilities and complex care needs.
Action Taken
Dynamic Support Registers will capture marriage and civil partnership data according to protected characteristic data collection standards. We will monitor this data on an ongoing basis.
We will scope and assess the impact of these policies on marriage and civil partnership and, if the evidence supports this, develop policy further to ensure equitable impact upon marriage and civil partnership.
Socio-economic Aspect: Living in Remote or Rural and/or Island Communities
Existing Evidence
There is no publicly available data on people with learning disabilities and complex care needs and remote/rural communities.
The Coming Home Report identified the number of out-of-area placements per Health and Social Care Partnership across Scotland in 2018, however it is not possible to identify specific trends relating to location from this data.
Action Taken
We understand there are challenges in delivering specialised and complex care to people in remote and rural communities. The Dynamic Support Registers will provide new data on the experience of people in remote or rural and/or island communities.
We will scope and assess the impact of these policies on remote, rural and island communities and, if the evidence supports this, develop policy further to ensure equitable impact upon geography.
Socio-economic Aspect: Living in areas of deprivation
Existing Evidence
There is no data available on people with learning disabilities and complex care needs and socio-economic status.
Data from the 2011 Scotland Census, provided through an analytical note on people with learning disabilities, evidences that 28.1 per cent of people with learning disabilities lived in the most deprived quintile (SIMD 1) and 12.1 per cent lived in the least deprived quintile (SIMD 5). For the general population, these proportions were 19.4 per cent (SIMD 1) and 20.1 per cent (SIMD 5) respectively. (NRS, 2016)
The 2022 Learning Disability Inpatient Activity report stated that people with a learning disability who lived in the most deprived areas were 2.8 times more likely to experience an episode of inpatient care in the Learning Disability specialty between 2016/17 and 2021/22 compared to those living in the least deprived areas (PHS, 2022).
Data from the Mental Health and Learning Disability Inpatient Census 2022 shows the proportion of patients who were unemployed was 48%. A further 8% of patients were not allowed to work, while 1% were students. Scotland's Census 2011 reported 70% of people aged 16 and over with learning disabilities had never worked, compared with 6.4 per cent of all people aged 16 and over. The 2019 Learning Disability Statistics Scotland reports that 4.1% of adults with learning disabilities known to local authorities were in employment.
All these reports include cohorts of individuals outwith the 'learning disabilities and complex care needs' definition and evidences the challenge caused by the lack of bespoke data collection for people with learning disabilities and complex care needs.
Action Taken
We committed to taking forward this bespoke piece of work specifically tailored to the needs of people with learning disabilities.
We know that people with learning disabilities are at economic disadvantage and will consider further socio-economic aspects of these policies and, if the evidence supports this, develop policy further to ensure equitable impact based on socio-economic status.
Decision Making and Monitoring
Recommendations and Findings
Does implementation of the three key recommendations from the Coming Home Implementation Report impact people because of their age?
| Age | Positive | Negative | None |
|---|---|---|---|
| Eliminating unlawful discrimination, harassment and victimisation | X | ||
| Advancing equality of opportunity | X | ||
| Promoting good relations among and between different age groups | X |
Reason for Decision
What we have done
We have included age within the Dynamic Support Register with a view to examining if there are any disproportionate impacts upon people because of their age.
What we will do
Collecting bespoke disaggregated data on age and people with learning disabilities and complex care needs will allow the Scottish Government; the National Support Panel; and the Peer Support Network to design and inform policy and practice to ensure our activity does not disadvantage people because of their age.
We anticipate therefore that implementation of the three key recommendations made within the Coming Home Implementation Report will not impact people because of their age.
| Disability | Positive | Negative | None |
|---|---|---|---|
| Eliminating unlawful discrimination, harassment and victimisation | X | ||
| Advancing equality of opportunity | X | ||
| Promoting good relations among and between disabled and non-disabled people | X |
Reason for Decision
What we have done
This programme of work is specifically designed to improve the lives of people with learning disabilities and complex care needs.
This work is specifically designed to have a positive impact on eliminating unlawful discrimination and advancing equality of opportunity for disabled people.
We have also included disaggregated disability data within the Dynamic Support Register with a view to examining if there are any disproportionate impacts upon people because of additional disabilities.
What we will do
Collecting disaggregated data on disability and people with learning disabilities and complex care needs will allow the Scottish Government; the National Support Panel; and the Peer Support Network to design and inform policy and practice so that our activity does not disadvantage people because of their disability.
Implementation of the three key recommendations made within the Coming Home Implementation Report is not anticipated to negatively impact relations between disabled and non-disabled people.
| Sex | Positive | Negative | None |
|---|---|---|---|
| Eliminating unlawful discrimination, harassment and victimisation | X | ||
| Advancing equality of opportunity | X | ||
| Promoting good relations among and between men and women | X |
Reason for Decision
What we have done
This programme of work is specifically designed to improve the lives of people with learning disabilities and complex care needs.
This work may impact more men as current population data suggests there are more men with learning disabilities and complex care needs.
We have included sex data within the Dynamic Support Register with a view to examining if there are any disproportionate impacts upon people because of their sex.
What we will do
Collecting bespoke current disaggregated data on sex and people with learning disabilities and complex care needs will allow the Scottish Government; the National Support Panel; and the Peer Support Network to design and inform policy and practice so that any activity does not disadvantage people because of their sex.
We do not anticipate that implementation of the three key recommendations made within the Coming Home Implementation Report will impact people because of their sex.
| Pregnancy and maternity | Positive | Negative | None |
|---|---|---|---|
| Eliminating unlawful discrimination, harassment and victimisation | X | ||
| Advancing equality of opportunity | X | ||
| Promoting good relations | X |
Reason for Decision
What we have done
We have included pregnancy and maternity data within the Dynamic Support Register with a view to examining if there are any disproportionate impacts upon people because of pregnancy and maternity.
What we will do
Collecting data on pregnancy and maternity and people with learning disabilities and complex care needs will inform policy and practice so that our activity does not disadvantage people because of pregnancy and maternity.
We do not anticipate that implementation of the three key recommendations made within the Coming Home Implementation Report will impact people because of pregnancy and maternity.
| Gender reassignment | Positive | Negative | None |
|---|---|---|---|
| Eliminating unlawful discrimination, harassment and victimisation | X | ||
| Advancing equality of opportunity | X | ||
| Promoting good relations | X |
Reason for Decision
What we have done
We have included gender reassignment data analysis within the Dynamic Support Register with a view to examining if there are any disproportionate impacts upon people because of gender reassignment.
What we will do
Collecting disaggregated data on gender reassignment and people with learning disabilities and complex care needs will allow the Scottish Government; the National Support Panel; and the Peer Support Network to design and inform policy and practice so that our activity does not disadvantage people because of gender reassignment.
We do not anticipate that implementation of the three key recommendations made within the Coming Home Implementation Report will impact people because of gender reassignment.
| Sexual orientation | Positive | Negative | None |
|---|---|---|---|
| Eliminating unlawful discrimination, harassment and victimisation | X | ||
| Advancing equality of opportunity | X | ||
| Promoting good relations | X |
Reason for Decision
What we have done
We have included sexual orientation data analysis within the Dynamic Support Register with a view to examining if there are any disproportionate impacts upon people because of their sexual orientation.
What we will do:
Collecting bespoke disaggregated data on sexual orientation and people with learning disabilities and complex care needs will allow the Scottish Government; the National Support Panel; and the Peer Support Network to design and inform policy and practice so that our activity does not disadvantage people because of their sexual orientation.
We do not anticipate that implementation of the three key recommendations made within the Coming Home Implementation Report will impact people because of their sexual orientation.
| Race | Positive | Negative | None |
|---|---|---|---|
| Eliminating unlawful discrimination, harassment and victimisation | X | ||
| Advancing equality of opportunity | X | ||
| Promoting good relations | X |
Reason for Decision
What we have done
We have included race data analysis within the Dynamic Support Register with a view to examining if there are any disproportionate impacts upon people because of their race.
What we will do
Collecting bespoke disaggregated current data on race and people with learning disabilities and complex care needs will allow the Scottish Government; the National Support Panel; and the Peer Support Network to design and inform policy and practice so that our activity does not disadvantage people because of their race.
We do not anticipate that implementation of the three key recommendations made within the Coming Home Implementation Report will impact people because of their race.
| Religion and belief | Positive | Negative | None |
|---|---|---|---|
| Eliminating unlawful discrimination, harassment and victimisation | X | ||
| Advancing equality of opportunity | X | ||
| Promoting good relations | X |
Reason for Decision
What we have done
We have included religion and belief data analysis within the Dynamic Support Register with a view to examining if there are any disproportionate impacts upon people because of religion and belief.
What we will do
Collecting data on religion and belief and people with learning disabilities and complex care needs will allow the Scottish Government; the National Support Panel; and the Peer Support Network to design and inform policy and practice so that our activity does not disadvantage people because of religion and belief.
We do not anticipate that implementation of the three key recommendations made within the Coming Home Implementation Report will impact people because of their religion and belief.
| Living in remote, rural and island communities | Positive | Negative | None |
|---|---|---|---|
| Eliminating unlawful discrimination, harassment and victimisation | X | ||
| Advancing equality of opportunity | X | ||
| Promoting good relations | X |
Reason for Decision
What we have done
This programme of work is specifically designed to improve the lives of people with learning disabilities and complex care needs.
Its key aim is to return people to their local communities from delayed discharges or inappropriate out-of-area placements.
We will conduct an Island Communities Impact Assessment to complement this Equality Impact Assessment.
We will examine geography within analysis of the data from the Dynamic Support Register with a view to examining if there are any disproportionate impacts upon people due to geography.
What we will do
Collecting data on geography and people with learning disabilities and complex care needs will allow the Scottish Government; the National Support Panel; and the Peer Support Network to design and inform policy and practice so that our activity takes account of geography.
We anticipate therefore that implementation of the three key recommendations made within the Coming Home Implementation Report will not negatively impact people because of geography.
| Living on low income/living in poverty | Positive | Negative | None |
|---|---|---|---|
| Eliminating unlawful discrimination, harassment and victimisation | X | ||
| Advancing equality of opportunity | X | ||
| Promoting good relations | X |
Reason for Decision
What we have done
This programme of work is specifically designed to improve the lives of people with learning disabilities and complex care needs who are likely to face socioeconomic disadvantage.
Its key aim is to return people to their local communities from delayed discharges or inappropriate out-of-area placements.
We will scope the possibility of including Scottish Index of Multiple Deprivation (SIMD) data analysis within the Dynamic Support Register which would allow us to examine if there are any disproportionate impacts upon people because of socioeconomic circumstances.
What we will do
Collecting data on socioeconomic factors and people with learning disabilities and complex care needs will allow the Scottish Government; the National Support Panel; and the Peer Support Network to design and inform policy and practice so that our activity does not disadvantage people because of socioeconomic circumstances.
Contact
Email: ceu@gov.scot
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