Learning Disability and Northern Ireland

Background

Proposals for the 2021 Northern Ireland (NI) Census indicated that NI citizens will, for the first time, be able to explicitly report that they (or members of their household) live with a learning disability. Given that, at present, there is no central register detailing the actual number of individuals with a learning disability in NI, this future Census data, supplemented by a variety of other Census metrics and data from an array of other NI administrative data sources (that contain important information on e.g. housing, family, employment, education, health, income, services and supports), will have the potential to transform our understanding of learning disability at a population level and, more importantly, our ability to more effectively respond to the needs of those living with learning disability. In anticipation of, and in preparation for this new and improved national data on learning disability, the current study, which commenced during the proposal/planning stage of the 2021 Census and under the auspices of the UK’s Administration Data Research Partnership, aimed to access and analyse existing administrative data relating to learning disability in NI, from 2007 and 2011, in order to highlight the availability, utility and import of learning disability data in NI, and to promote and stimulate future use of this administrative data in the region.

The findings of the study reveal much about the current state of play in NI regarding administrative data and learning disability. While there is much to be positive and optimistic about, there are also notable challenges and obstacles that will need to be overcome if we are to truly realise the potential of our existing and future administrative data. Among other things the study findings have revealed (i) the value and potential of Census data, alone, in identifying and locating individuals with learning disability in NI, and describing much about the socio-economic, health, education and demographic characteristics of the learning disability population, (ii) the limitations of poorly defined/designed Census survey questions and the importance of survey item specificity for accurately recording learning disability prevalence, (iii) the immense value of disability-focussed household survey data obtained using probability-based sampling methods and its potential to contextualise and amplify the findings from Census data, (iv) the presence of, but, inaccessibility to, a variety of important Northern Ireland administrative data resources that have the potential to transform our understanding of important learning disability issues relating to e.g. health, service use, medication use, education and employment, and finally (v) the importance of administrative data awareness and timely use of data by all. It is hoped that the findings will aid researchers, policy makers, service commissioners and practitioners in all sectors in the years to come.

Methodology

Three primary sources of data were accessed and analysed for the current study: (1) data from the 2011 Census, (2) data from the NI General Registrar Office, and (3) data from the 2007 NI Survey of Activity Limitation and Disability (NISALD). The study also used NI Settlement Band data and linked data from the NI Multiple Deprivation Measure. Access to the data from the first two sources was provided by the Administrative Data Research Centre – NI (ADRC-NI; now the Administrative Data Research NI - ADR NI), part of a recent UK-wide initiative funded by the Economic and Social Research Council (ESRC) to increase use of administrative data sources and linkages for research purposes. The data from these sources was linked by the Northern Ireland Statistics and Research Agency (NISRA) Research Support Unit (RSU) team, tested for potential disclosure problems, de-identified and, made available to the research team in a secure setting at NISRA headquarters in Belfast. The NISALD data (private households only), collected by NISRA in 2006-2007, was sourced from the UK data archive (UK Data Archive Study Number 7236). Ethical approval for this study was obtained from the Ulster University Research Ethics Committee, and the Administrative Data Research Network.

Key findings

Prevalence

National learning disability prevalence based on 2011 Census crude learning disability indicator

• The prevalence of learning disability within the overall Census population = 2.2%
• The prevalence of learning disability among those aged 15 years or younger = 3.8%
• The prevalence of learning disability among those aged 16 years or over = 1.7%

Prevalence within communal establishments

• The prevalence of learning disability among those aged 15 years or younger = ~13.1%
• The prevalence of learning disability among those aged 16 years or over = ~13.9%.

Prevalence within private households

• The prevalence of learning disability among those aged 15 years or younger = 3.8%.
• The prevalence of learning disability among those aged 16 years or over = 1.5%.

Prevalence by Health & Social Care Trust

• Overall prevalence of learning disability ranged from 1.9% (Northern HSCT) to 2.5% (Belfast HSCT)
• Prevalence among those aged 15 years or younger ranged from 3.2% (Southern HSCT) to 4.8% (Belfast HSCT)
• Prevalence among those aged 16 years or over ranged from 1.5% (Northern HSCT) to 2% (Belfast & Western HSCTs)

National learning disability prevalence based on the more explicitly defined measure of intellectual disability contained within the 2007 Northern Ireland Survey of Activity Limitations and Disability (NISALD)

• The prevalence of learning disability within the overall NISALD sample = 0.5%
• The prevalence of learning disability among those aged 15 years or younger = 1.3%
• The prevalence of learning disability among those aged 16 years or over = 0.3%

Socio-economic and demographic characteristics of NI’s learning disability population

• According to the Census data, over 60% of those reporting a learning disability were male.
• In relation to age, learning disability was more common among those aged 15 years or younger. While 29% of those who had a learning disability in addition to at least one other health condition were under 16 years of age, 50% of those who reported learning disability as their only health condition were under 16 years of age.
• From the Census data, learning disability status was associated with greater deprivation. Among those reporting a learning disability as their only health condition, 12.7% were in the first decile (i.e. most deprived) while 7.6% were in the 10th decile (least deprived). Among those reporting learning disability with at least one other health condition, 15.1% were in the first multiple deprivation index decile while 5.9% were in the 10th. Over 39% of those living with a learning disability within the Belfast HSCT area were in the first multiple deprivation index decile.
• The majority of those with a learning disability, either as a single health condition, or, comorbidly with other health conditions, were neither living as part of a couple nor living alone
• Regarding activity limitation, the majority (52%) of those with a learning disability as a single condition indicated that their day-to-day activities were not limited, while a minority (19%) indicated that their day-to-day activities were limited a lot. Conversely, 68% of those living with a learning disability comorbidly with at least one other health condition indicated that their day-to-day activities were limited a lot while only 12% indicated that their day-to-day activities were not limited.
• Within the overall Census sample, 1.3%-1.4% respectively of those with a learning disability, either as a single health condition, or, comorbidly with other health conditions, identified as non-white (=1.1% prevalence of learning disability among non-white ethnic population in NI).
• Over 35% of those with a learning disability, either as a single health condition, or, comorbidly with other health conditions resided within the Belfast Metropolitan Urban Area while over 23% of those with a learning disability, either as a single health condition, or, comorbidly with other health conditions resided in a small village, hamlet or the open countryside.

General health and comorbidity statusof NI’s learning disability population

Learning disability as a single health condition

• Compared to those reporting good or very good general health, those who had bad or very bad general health were over 3.5 times more likely to be non-white.
• Compared to those reporting good or very good general health, those who had bad or very bad general health were over 2.5 times more likely to live in areas of most extreme deprivation (i.e. the first and second multiple deprivation index deciles).
• Those whose day to day activities were ‘limited a little’ were over 4.5 times more likely to have bad or very bad health, while those whose day to day activities were ‘limited a lot’ were over 22.5 times more likely to have bad or very bad health compared to those reporting good or very good general health.

Learning disability with at least one other health condition

• Compared to those reporting good or very good general health, those who had bad or very bad general health were more likely to be female.
• Compared to those reporting good or very good general health, those who had bad or very bad general health were over 5.5 times more likely to reside in a private household.
• Compared to those living a small village, hamlet or open countryside, those living in the Belfast metropolitan urban area, a medium sized town, a small town, or a village, were more likely to have bad or very bad health.
• Compared to those reporting good or very good general health, those who had bad or very bad general health were significantly more likely to live in more deprived areas (i.e. within the first seven multiple deprivation index deciles).
• Those individuals whose day to day activities were ‘limited a little’ were over 2 times more likely to have bad or very bad health, while those whose day to day activities were ‘limited a lot’ were over 18 times more likely to have bad or very bad health compared to those reporting good or very good general health

Health condition comorbidity under 16 years

• Among those with a learning disability in this age group, the most commonly co-occurring health conditions were communications difficulties (66.4%), mobility issues (33.4%), ‘other’ health conditions (26.2%) and respiratory problems (23.7%).
• Compared to those under aged 16 years who had multiple health conditions not including learning disability, a higher proportion of those under aged 16 years who had multiple health conditions including learning disability experienced memory loss (1.6% v 4.5% respectively), communications difficulties (17.1% v 66.4% respectively), and mental health problems (5.3% v 15.6% respectively).

Health condition comorbidity over 15 years

• Among those with a learning disability in this age range, the most commonly co-occurring health conditions were communications difficulties (53.2%), mobility issues (52.1%), mental health problems (45.7%), memory loss (25.2%) and respiratory problems (24%).
• Compared to those over aged 15 years who had multiple health conditions not including learning disability, a higher proportion of those over aged 15 years who had multiple health conditions including learning disability experienced memory loss (12.4% v 25.2% respectively), communications difficulties (5.5% v 53.2% respectively), mental health problems (25.7 v 45.7 respectively) and blindness or visual impairment (9.6% v 10.9% respectively).

Mortality and cause of death among NI learning disability population

• Overall, 4.8% of individuals who identified the presence of a learning disability during the 2011 Census died between March 2011 and December 2015. Among those without a learning disability at the 2011 Census, 3.7% died during this period.
• Among those who died and where learning disability was recorded as their only health condition at the 2011 Census, circulatory system complications were the most common cause of death (22%), followed by respiratory system complications (16.5%), then neoplasms (13.2%).
• Among those who died and where learning disability was recorded as one of a number of health conditions at the 2011 Census, circulatory system complications were the most common cause of death (19.2%), followed by nervous system complications (16.1%), then respiratory system complications (14%).
• Compared to those in the NI population who did not identify the presence of a health condition at the 2011 Census, those individuals who indicated that learning disability was one of a number of underlying health conditions had the highest risk of death between March 2011 and December 2015. These individuals were almost six times more likely to die (OR=5.87, 95%CI=5.82-5.92) compared to the large majority of the NI population who were free from health conditions at the last Census. In comparison, those who had multiple health conditions excluding learning disability at the 2011 Census were approximately three times more likely to die during this period (OR=3.38, 95%CI=3.36-3.40).

Employment among NI learning disability population (see Appendix 4)

• In the overall population and among those aged 16 years or over, 18.8% of individuals who reported the presence of a learning disability at the 2011 Census also indicated that they were in paid employment. Among the remainder of the NI working-age population, regardless of health condition status, 55% indicated that they were in paid employment.
• The top five areas of employment among those who reported the presence of a learning disability at the 2011 Census were 1. Sales and retail assistants (10.9%), 2. Employment in areas including farming, gardening, carpentry, labouring, goods handling and storage, and shelf filling (8.2%), 3. Associate professional and technical occupations (6.6%), 4. Kitchen and catering assistants (4.3%), 5. Domestic cleaning (3.8%).
• Mode of employment was notably influenced by both sex and settlement band. For example, of the most common modes of employment, a higher proportion of females were employed as care assistants and home carers, waiting staff, or kitchen catering assistants. A higher representation of males was evident within all remaining modes of employment. In relation to farming, gardening, carpentry, labouring, shelf-filling, or goods handling and storage, 92.7% of jobs were held by male respondents. In relation to settlement band (i.e. city, town, rural), 70.3% of individuals with a learning disability who worked in farming or gardening, and 55.6% of those who worked as a labourer resided in a rural area. Over 50% of those who worked as a waiter/waitress, handling goods, office administration, or associate professional/technical occupations resided in a city.

Conclusions & implications of study findings

A burgeoning international research literature continues to detail the extreme disadvantages that are disproportionately faced by those in society living with a learning disability. Worryingly, this extreme population-specific disadvantage is further and significantly compounded by the fact that those living with a learning disability, in many countries, remain unseen. Learning disability specifically, at a population level, has either remained unrecorded and undetected or has been camouflaged/hidden/buried within general health data, that have referred to limitations in day-to-day activities or inability to work as a result of health problems or disability. We hope that these findings will (i) highlight the availability, utility and import of learning disability data in NI, (ii) promote and stimulate future use of this data in the region, (iii) incentivise those in power to facilitate NI data custodians to share/link available learning disability relevant data where possible and (iv) lay some useful foundations for the more advanced and sophisticated learning disability statistical modelling that will be possible in the years to come and the policy changes that will emerge as a consequence.

Outputs

Final Report

Roundtable partner briefing #1

Roundtable partner briefing #2

Roundtable partner briefing #3

Project consortium research memo to Northern Ireland Statistics and Research Association

Project consortium research memo to Northern Ireland Census Team

Administrative Data Research International Conference presentation

IJPDS publication

Project Team

This project was funded by the Economic and Social Research Council, Secondary Data Analysis Initiative (Project No: ES/P002293/1), conducted under the auspices of the UK’s Administration Data Research Partnership, and completed by a multi-disciplinary team comprising researchers from Ulster University, the University of Bristol, and the Learning Disabilities Observatory Team, Public Health England, and senior representatives from the Public Health Agency (PHA), the Health and Social Care Trusts (HSCTs), the statutory sector (ARC, Positive Futures) and a learning disabilities service user group (COMPASS).

Acknowledgements

The help provided by the staff of the Administrative Data Research Network Northern Ireland (ADRC-NI) and the NISRA Research Support Unit is acknowledged. The ADRCNI is funded by the Economic and Social Research Council (ESRC). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the ADRC-NI. The Census-based and Enhanced Prescribing Database data has been supplied for the sole purpose of this project.

The Administrative Data Research Network takes privacy protection very seriously. All information that directly identifies individuals will be removed from the datasets by trusted third parties, before researchers get to see it. All researchers using the Network are trained and accredited to use sensitive date safely and ethically, they will only access the data via a secure environment, and all of their findings will be vetted to ensure they adhere to the strictest confidentiality standards.