Disabilities In England Research Articles

National Diabetes Audit 2015–2016 shows variations in care processes and targets

National Diabetes Audit 2015–2016 shows variations in care processes and targets

1085 - Testicular cancer in patients with learning disabilities in England from 2001-2015: A national cohort study

1085 - Testicular cancer in patients with learning disabilities in England from 2001-2015: A national cohort study

Widespread abuse of adults with learning disabilities.

Thousands of adults with learning disabilities in England may have been sexually abused in the past two years, figures obtained by Nursing Standard suggest.

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal-able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

The construction of training for qualified teacher who work with children with Special Educational Needs and Disability in England

The construction of training for qualified teacher who work with children with Special Educational Needs and Disability in England

Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N=260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.

Equity in social care for people with intellectual disabilities? A cross-sectional study examining the distribution of social care funding across local authorities in England.

Many people with intellectual disabilities rely on social care provision, though little research has looked at how access to such provision is distributed nationally. Evidence from children's services suggests that there are large discrepancies between local authorities (LAs) in terms of the resources expended on interventions with children and families, which can be explained by variations linked to geographical location, namely the level of socioeconomic deprivation between LAs, constituting 'child welfare inequalities'. This study explored relationships between resources allocated to community services for people with intellectual disabilities in England and geographical factors, including deprivation, rurality and political leadership in the LAs where these individuals reside. Data were sourced from publicly available reports of spending of 151 English councils with adult social services responsibilities (CASSRs) for 2013-2014 and from CASSR index of multiple deprivation (IMD) scores and rurality for the same period. We found that more deprived LAs supported more people with intellectual disabilities, per 100,000 of population. We did not find effects for rurality or political party. However, it was not the case that more deprived LAs allocated more funds for expenditure on this group. These findings point to inequities in the distribution of social care resources for people with intellectual disabilities in England, as although more deprived LAs support more people with intellectual disabilities, they do not spend proportionally larger sums of money on this group. We discuss possible explanations for these findings and highlight the need for more research, particularly investigations about allocation of resources within LAs and more detailed explorations of how structural factors such as socioeconomic status of service users effects service access at the local level.

Mortality in people with intellectual disabilities in England.

People with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England. We used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause. Mortality rates for people with ID were significantly higher than for those without. Their all-cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA. National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population-based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non-syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives.

Funding variations for pupils with special educational needs and disability in England, 2014

This study explores the funding variations by English local authorities (LAs) in January 2014 for pupils with special educational needs and disability (SEND). Two quintile groups ( n = 30) are used for comparing LAs with low and high levels of statements and case studies are presented to further explore the allocations. The research findings provide a baseline for LA critical self-reviews and benchmarking of any revised funding formulae. Authorities that make limited use of statements are found to have significantly lower budgets for SEND pupils with and without statements, are more inclusive and make use of statements to primarily access special settings. Evidence is presented to affirm that the government’s current allocation methods, in part based on past levels of funding, can seriously challenge and undermine those LAs with a policy of inclusion and controlled use of statements, as these latter LAs may also wish to make vigilant use of education, health and care plans from September 2014.

Mortality Among Adults With Intellectual Disability in England: Comparisons With the General Population.

To describe mortality among adults with intellectual disability in England in comparison with the general population. We conducted a cohort study from 2009 to 2013 using data from 343 general practices. Adults with intellectual disability (n = 16 666; 656 deaths) were compared with age-, gender-, and practice-matched controls (n = 113 562; 1358 deaths). Adults with intellectual disability had higher mortality rates than controls (hazard ratio [HR] = 3.6; 95% confidence interval [CI] = 3.3, 3.9). This risk remained high after adjustment for comorbidity, smoking, and deprivation (HR = 3.1; 95% CI = 2.7, 3.4); it was even higher among adults with intellectual disability and Down syndrome or epilepsy. A total of 37.0% of all deaths among adults with intellectual disability were classified as being amenable to health care intervention, compared with 22.5% in the general population (HR = 5.9; 95% CI = 5.1, 6.8). Mortality among adults with intellectual disability is markedly elevated in comparison with the general population, with more than a third of deaths potentially amenable to health care interventions. This mortality disparity suggests the need to improve access to, and quality of, health care among people with intellectual disability.

‘They’ve said I’m vulnerable with men’: Doing sexuality on locked wards

In intellectual disability services, women’s sexuality has long been considered a problem, with women being removed from their residences and segregated from men as a form of protection. This paper draws on ethnographic research based on a secure unit for people with intellectual disabilities in England. It suggests that staff and clients are concerned about the client mix on the unit, and that staff feel protective towards women service-users. Physical contact on the wards is highly regulated and all spaces are described as ‘public’, therefore women are not afforded privacy to explore their sexuality. During interviews, many of the women disclosed experiences of childhood sexual abuse and some were unsure about their sexual orientation. This paper argues that life on the locked ward positions intellectually disabled women as both sexually vulnerable and as fundamentally asexual. This prevents women from learning the skills needed to make informed choices about sexual partners.

The factors associated with care-related quality of life of adults with intellectual disabilities in England: implications for policy and practice.

Over the last three decades, quality of life (QoL) has been advocated as an indicator of social care outcomes for adults with intellectual disabilities. In England, the Adult Social Care Survey (ASCS) is conducted annually by local authorities to contribute to the evidence base of the care‐related QoL of people receiving publicly funded adult social care. This study explores relationships between QoL and non‐care‐related factors to identify relationships that could inform social care policy and practice. Cross‐sectional data collected from 13,642 adults who participated in the 2011 and 2012 ASCS were analysed using regression to explore the factors associated with QoL measured using the Adult Social Care Outcomes Toolkit (ASCOT). Self‐rated health, rating of the suitability of home design and anxiety/depression were all found to be significantly associated with ASCOT. Other individual and survey completion factors were also found to have weak significant relationships with ASCOT. The models also indicate that there was an increase in overall ASCOT‐QoL and in five of the eight ASCOT domains (Personal comfort and cleanliness, Safety, Social participation, Occupation and Dignity) between 2011 and 2012. These findings demonstrate the potential value of QoL data for informing policy for people with intellectual disabilities by identifying key factors associated with QoL, the characteristics of those at risk of lower QoL, and QoL domains that could be targeted for improvement over time. Future research should establish causal relationships and explore the risk adjustment of scores to account for variation outside of the control of social care support.

Abstract P165: Future Burden of Morbidity and Disability in England and Wales: A Modelling Study

Background: Cardiovascular disease (CVD) and dementia have profound impacts on the morbidity and disability burden in older people. Uncertainty remains regarding the future incidence of these conditions. We forecast future levels of morbidity and disability in England and Wales up to 2040 under two scenarios regarding CVD and dementia future trends. Methods: We developed a probabilistic Markov model (IMPACT-BAM) which follows the transitions of the England and Wales population into health states characterised by the presence or absence of CVD, dementia and disability to 2040. Data sources include national health registers (ONS) and cohort studies (HSE, Whitehall II and ELSA). Modelled CVD and Non-CVD mortality and prevalence trends for disability and morbidity were used to estimate trends in life expectancy (LE), morbidity-free life expectancy (MFLE) and disability-free life expectancy (DFLE). We assumed that CVD incidence and mortality will continue their current trends and modelled two scenarios: Scenario A assumes constant dementia incidence, a common assumption when projecting future burden of dementia; Scenario B assumes 2% annual decline in dementia incidence, as suggested in UK population-based cohorts. Results: In 2011, LE at age 65 was 18.4 years for men and 21.0 years for women. In Scenario A, LE at 65 in 2040 will increase to 26.7 and 24.8 years in men and women. DFLE at 65 will increase (by 5.5 years in men and 2.8 years in women, to 21.7 and 20.7 years respectively). MFLE at 65 will increase slightly (by 1.5 years in men and 1.4 in women, to 10.7 and 13.2 years respectively). Disability prevalence would increase by 3.1% to 14.4% ( 1,081,483 of 7,510,299) in men and decrease slightly (by 0.6% to 14% (1,214,754 of 8,676,813)) in women. In Scenario B, LE at 65 in 2040 will increase to a similar degree as in Scenario A, but DFLE and MFLE will increase faster (DFLE: by 7.5 years in men and 4.6 in women, to 23.7 and 22.5 years respectively; MFLE: by 4.5 years for both genders to 13.8 years in men and 16.3 in women). Disability prevalence will slightly increase (by 0.8% to 12.1% (908,746 of 7,510,299)) in men and decrease by 3.0% to 11.4% (989,157 of 8,676,813) in women. Conclusions: The future disability burden crucially depends on assumptions about future dementia incidence trends. If the dementia incidence continues unchanged, the duration of morbidity and disability will be prolonged. However, if dementia incidence decreases (as suggested in the UK and mirroring CVD declines) we could live more years in good health, with morbidity compressed into a shorter period before death.

Politics and intellectual disability in England: an historical perspective

Objectives: This paper seeks to explore from an historical perspective the way in which political climates impinge upon the public and professional perception of what constitutes appropriate provision for people with an intellectual disability.Methods: A systematic review of literature relating to policy and provision for people with an intellectual disability in England was undertaken.Results: Evidence drawn from the disciplines of cultural anthropology and history demonstrates that people with an intellectual disability have been identified across cultures and historical epochs. In the three decades following the end of World War 2 (WW2), a significant development occurred in England: as a result of pioneering research work undertaken by a small group of psychologists, drawn mainly from countries beyond England, the learning potential of children and young people with an intellectual disability was demonstrated. The findings from this research led to landmark changes in legislation. The present paper seeks to underscore the fact that the changes in provision for people with an intellectual disability in the thirty years following the end of WW2 resulted from the findings of well-conceived and executed research.Conclusions: There is an urgent need to discuss the future shape of all services for people with an intellectual disability but in a professional climate characterised by informed analysis and not ideological preference.

Is policy having an impact? Commentary on “A summary of government initiatives relating to employment for people with learning disabilities in England”

Purpose – The purpose of this paper is to provide a commentary on “A summary of government initiatives relating to employment for people with learning disabilities in England”. Design/methodology/approach – In her paper, Blamires outlines the development of policy in employment for people with learning disabilities. This commentary explores whether this policy development is having any impact. Findings – The statistics indicate that development of policy does not appear to be making a difference. It is concluded that this is about how it is being implemented and the time it takes for policy to have an impact. What is needed to fully implement these changes is a huge cultural shift, changing people’s mindset about what people with learning disabilities can achieve. Originality/value – This paper provides an individual perspective on the impact of policy on the lives of people with learning disabilities.

A summary of government initiatives relating to employment for people with learning disabilities in England

Purpose– The purpose of this paper is to provide a synthesis of current and previous government policies and strategies, in relation to people with learning disabilities and employment, to facilitate a better understanding of the current situation and future challenges.Design/methodology/approach– A search was completed to identify government policies relating to the employment of people with learning disabilities. Key policies were identified and their impact was discussed in the paper.Findings– It appears there is a necessity to identify how successful pilot projects can be replicated on a national scale, with clear targets and measures and initial financial support to set up these services. Alongside this there is a need for interventions targeting not just employers, but the general population, educating people about the importance of including and valuing people with learning disabilities in the workforce.Originality/value– It is important that policy is analysed and the impact of it is assessed to determine whether more action is necessary. This paper adds updates to some of the issues discussed in Mellinget al.’s (2011) paper about “Supported employment for people with learning disabilities”.

Conflicting Models of Care for People with Mental Disabilities in Charles Dickens's Fiction and Journalism

In contrast to the mid-Victorian medical discourse extolling the benefits of asylums and residential training schools for children with mental impairments, contemporary literary representations criticize the institutional provision of care, instead favouring a community solution, which indeed was the predominant model throughout the Victorian era. The article explores representations of caring in the novels and journalism of Charles Dickens in comparison to the models of care available for people with mental disabilities in England at the time. Dickens's support for the disadvantaged is legendary, but the subject of care for people with mental disabilities in his work is more nuanced than has hitherto been shown.

Numbers and policy in care for people with intellectual disability in the United Kingdom.

Statements or commitments making use of numbers have an important place in government policy. They appear at all stages of the policy process: campaigning, formulation, monitoring and evaluation. Many types of source are involved including research studies, national survey information, routine operational data collections and special systems devised to monitor particular initiatives. The paper presents examples of policy uses of numerical evidence, and some sources of data that have been used to support them in the field of care for people with intellectual developmental disability in England. Different levels of precision or coverage are required at different stages of the process. Different types of numerical data are appropriate at the various stages of the policy process.

Access to cancer screening by people with learning disabilities in England 2012/13: information from the Joint Health and Social Care Assessment Framework

Purpose– The purpose of this paper is to present information from the Joint Health and Social Care Self-Assessment Framework (JHSCSAF) on reported rates of cervical cancer, breast cancer and bowel cancer screening for eligible people with learning disabilities in England in 2012/2013 compared to screening rates for the general population.Design/methodology/approach– Between 94 and 101 Learning Disability Partnership Boards, as part of the JHSCSAF, provided information to allow the calculation of rates of cervical cancer, breast cancer and bowel cancer screening in their locality, for eligible people with learning disabilities and for the population as a whole.Findings– At a national level, reported cancer screening coverage for eligible people with learning disabilities was substantially lower than for the population as a whole (cervical cancer screening 27.6 per cent of people with learning disabilities vs 70 per cent of total population; breast cancer screening 36.8 per cent of people with learning disabilities vs 57.8 per cent of total population; bowel cancer screening 28.1 per cent of people with learning disabilities vs 40.5 per cent of the general population). There were considerable geographical variations in reported coverage for all three screening programmes.Originality/value– Consistent with previous research, localities in England report cancer screening rates for eligible people with learning disabilities considerably below those of the general population. There is an urgent need to address data availability and quality issues, as well as reasonable adjustments to cancer screening programmes to ensure uniformly high rates of cancer screening for people with learning disabilities across England.

Idiocy and Aberrancy: Disability, Paul de Man, and Wordsworth’s “Idiot Boy”

This essay approaches Wordsworth’s “Idiot Boy” by way of juxtaposing disability studies scholarship with deconstructive readings proposed by Paul de Man.