High Cost Residential Placements for Adults with Intellectual Disabilities

Background Concern has been expressed repeatedly about the cost and quality of residential placements for adults with learning disabilities and additional needs. This study sought to identify characteristics of the highest cost placements in the South‐East of England. Method Lead learning disability commissioners in the South‐East of England were asked to provide information about the five highest cost residential placements that they commissioned for adults with learning disabilities. Results The average placement cost of £172k per annum disguised wide variation. Individuals placed were mainly young and male with high rates of challenging behaviour and/or autism spectrum disorder. Most placements were in out‐of‐area residential care. The highest costs were associated with hospital placements and placements for people presenting challenging behaviour. Conclusions Young, male adults with learning disability, challenging behaviour and/or autism continue to receive very high cost residential support, often in out‐of‐area residential care. There remains limited evidence of plans to redirect resources to more local service developments.     

Primary health care provision for adults with a learning disability

BACKGROUND: During the last decade, primary care has been designated as the main provider of health care to people with learning disabilities. Practice nurses based in primary care teams are increasingly the first points of contact with health services. They make an important contribution to promoting good health, with health screening and illness prevention work being a significant part of their role. However, little is known about their views or involvement regarding the provision of primary care for people with learning disabilities. There is therefore a need to explore the nursing perspective, from within primary care, on the current provision of care for people with a learning disability. RESEARCH AIM: To inform the learning disability service of the role of primary care in current service provision for people with learning disabilities. RESEARCH METHOD: A survey of all practice nurses currently employed by Grampian Health Board in Aberdeen was conducted in June 2001. An initial pilot study was conducted in primary care and learning disability services. Data collection took place during June and July 2001. All practice nurses working in the geographical region of Grampian were invited to participate. RESULTS: Communication barriers exist, preventing access to health screening and treatment for some people with learning disabilities. Independent living skills, for example dietary management and budgeting, require additional community support. These conditions pose complex problems for practice nurses and other members of the primary care team. CONCLUSION: This study indicates a need for closer support and partnership with the learning disability service. The factors necessary for providing health care to people with learning disabilities extend beyond the domain of primary care teams. The findings of this survey have important implications for education and support to enable carers and professionals to provide a high standard of care.     

Indicators of choking risk in adults with learning disabilities: a questionnaire survey and interview study

Purpose. Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking. Method. A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A 'service user' may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture. Results. A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals. Conclusion. Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

Responses and needs in a changing situation: staff who work with people with learning disability

Responses and needs in a changing situation: staff who work with people with learning disability
Questionnaires were sent to residential care staff working with people with learning disability both in hospital and community settings, to explore any changes resulting from implementation of the policy of care in the community. Information was obtained on the current job situation of staff, their opinions on the effect of the policy of care in the community, their training needs, and perceived job prospects for the future. Findings for staff working in a hospital setting are compared with those of staff working in the community and discussed in the context of changing demands and conditions.     

Indicators of choking risk in adults with learning disabilities: A questionnaire survey and interview study

Purpose.?Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking.

Method.?A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A ‘service user’ may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture.

Results.?A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals.

Conclusion.?Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

Resident Involvement in Activity in Small Community Homes for People with Learning Disabilities

Background Determining the relative importance of variables including client characteristics, setting features, staffing and care practices on the lives of people with learning disabilities in residential care continues to be a relevant topic for research. Methods Measurements were made of the adaptive and problem behaviour of 343 adults with intellectual disabilities living in 76 residential homes and of various aspects of staffing, care practices (extent of active support) and resident engagement in meaningful activity. Ordinal and logistic regression was used to identify variables best predicting engagement and care practices. Results Only adaptive behaviour and care practices predicted resident engagement in meaningful activity; only age and adaptive behaviour predicted care practices. Conclusions Given the limited scope for changing resident adaptive behaviour, attention should be given to improve active support in residential homes in order to promote greater engagement in meaningful activity by people with learning disabilities.     

The evolving role of community nurses for people with learning disabilities: changes over an 11-year period

Aims and objectives. To provide an overview of the changes in the caseload and working practices of community nurses for people with learning disabilities (CNLDs) over an 11‐year period within one region of the UK. Background. Recent reviews of government policy within the UK and internationally have highlighted the need to promote inclusion and health facilitation for people with learning disabilities (intellectual disabilities). The CNLDs have been highlighted as having an integral role in achieving these objectives. However, little is known about the current role of community nurses and how this has evolved over the past decade. Designs and methods. A survey design was used in which the total population of CNLDs within one region of the UK were asked to complete a postal questionnaire. Results. Forty community nurses in Northern Ireland completed questionnaires. This provided information about 1559 people with learning disabilities on their current caseloads. Results showed less involvement with children, more focus on adults with physical and mental health needs and nurses often appeared to have a monitoring rather than an active clinical role. Data also identified an increasing caseload size and a pattern of referral largely from within learning disability services. Conclusions. The role of CNLDs has altered in Northern Ireland over the past 11 years with some evidence of a reorientation towards a more health‐oriented focus. Further consideration needs to be given to how well this will meet the changing needs of people with learning disabilities and their families in light of the increasing emphasis on the provision of inclusive services. Relevance to clinical practice. Community nurses need to review their current role, caseload management and links to primary and acute care if the policy objectives of inclusive services and health facilitation are to be achieved. It will also be necessary to revise their education preparation in light of the changing role of CNLDs.     

Meeting the needs of people with learning disabilities in acute care

This article describes the work of the Birmingham Acute Hospital Liaison Project, which seeks to support people with learning disabilities in acute care. Following the community care reforms, more and more people with learning disabilities are accessing mainstream primary and secondary healthcare services in community settings staffed by generic rather than specialist learning disability staff. Unfortunately, research suggests that some people with learning disabilities receive poor quality care and that available services are not always responsive to their needs. As a result, the Acute Hospital Liaison Project has a dual role: supporting people with learning disabilities as they enter hospital; and working with ward staff to equip them with the skills and confidence they need to work more effectively with people with learning disabilities.     

Outcomes and Costs of Residential Services for Adults with Intellectual Disabilities in Taiwan: A Comparative Evaluation

Background The disability policy in Taiwan has traditionally emphasized residential care in large institutions and, more recently, medium‐sized group homes. This paper compares the relative costs, services provided and outcomes between the traditional institutions, medium‐sized group homes and new small‐scale community living units that were launched in 2004 in Taiwan. Materials and Methods Cross‐sectional analysis was used to investigate the three current residential service models. A total of 248 participants with intellectual disabilities were interviewed, including all residents from the existing 25 small residential units and purposively sampled respondents from the other two residential models. Results Outcomes for the Taiwanese participants were consistent with the existing literature on deinstitutionalization from Western societies. Small homes provided better subjective and objective quality of life than both medium‐sized community‐based units and traditional institutions. Conclusion Participants living in small residential homes experienced better outcomes at lower cost than persons living in medium‐sized group homes or institutions.     

Resettlement Outcomes for People with Severe Challenging Behaviour Moving from Institutional to Community Living

Background The purpose of this study was to evaluate the quality of life consequences arising from the resettlement of adults with challenging behaviour severe enough to be deemed to require continuing healthcare from a traditional learning disability hospital to new purpose‐built bungalows. The new accommodation was provided by a specialist NHS trust through special project arrangements designed to ensure that the provision of homelike accommodation in the community was coupled with ‘state of the art’ staff training. Methods There were 19 participants. Baseline data were collected on their adaptive and challenging behaviour and psychiatric status. Data on a variety of quality of care and lifestyle indicators were collected when the entire sample was in hospital (T₁), when a minority had moved to the community, but the majority remained in hospital (T₂), when the majority had moved to the community but a minority remained in hospital (T₃) and at follow‐up (T₄), when all lived in the community. Results There were almost no areas of significant deterioration in quality of care or lifestyle outcome arising from moving to the community. The community provision was more homelike and associated with some improvement in working methods and staff contact received by participants, increased family contact, greater participant involvement in household activity and constructive activity generally and reduction in staff‐reported challenging behaviour. Increases in the range and frequency of social and community activities over time were found but such increase also occurred while people remained in the hospital. Conclusions This evaluation has shown that the quality of care and lifestyle outcomes associated with new NHS community settings for adults with learning disabilities and severe challenging behaviour assessed as requiring continuing healthcare were generally equivalent or superior to previous hospital levels. In this, findings were similar to other more general deinstitutionalisation studies. Certain improvement over time was found within the follow‐up period studied. Further follow‐up may be relevant as developing the desired working culture among staff from an institutional background may take longer than was given within the length of this study.     

Physical activity determinants in adults. Perceived benefits, barriers, and self efficacy.

The determinants of physical activity in adults were explored in this study. Explanatory variables included perceived benefits of and perceived barriers to physical activity, and perceived self efficacy for physical activity. Inactive participants were asked to identify barriers to activity, and active participants cited cues prompting them to adopt a physically active lifestyle. Data were collected from 137 adults obtained from work sites, an evening college program, and church groups. Overall, participants were physically active. Self efficacy was the only variable to predict physical activity. Race (i.e., being White) and body mass index (i.e., being overweight) explained perceived barriers to activity. The primary reason for inactivity was lack of time, and the most frequently cited cues to activity were dissatisfaction with one's weight or appearance. Few nursing studies have attempted to increase participants' levels of self efficacy. However, the occupational health nurse is in a unique position to increase workers' perceived self efficacy for activity and, in turn, their activity levels.     

Community re-entry after critical illness

Community re-entry after a critical illness is a multifaceted ongoing process. Nurse case managers may have the opportunity for long-term follow-up. This is desirable because the individual with a disability must be considered as a developing and changing individual, physically, cognitively and spiritually. Coping and adapting to the many challenges is a continuous process as well. Although barriers persist in communities across the nation, much progress has been made in enabling persons with disabilities to live independently in the community. When value is placed on these individuals, they may live in the community as active and productive individuals who are seen for their abilities and not for their disabilities. Rehabilitation nurses have the opportunity to use many innovative approaches to access information, facilitate community resources and services, and ease transition for persons with disabilities who are returning to their communities. Nurses also have the opportunity to teach, empower, and advocate for individuals with disabilities so that they may achieve the highest level of independence possible. Successful community re-entry can only be achieved when the individual and his or her family are involved. Together with the rehabilitation team, they can return to the community as active and productive members of society or they may return simply because they belong to their community. Either way, they may enjoy quality of life as persons who have many abilities despite their disabilities.     

Effective health care for people with learning disabilities: a formal carers' perspective

This paper explores the perceptions and experiences of formal carers, working in three different geographical locations in the south of England, in accessing primary health care for people with learning disabilities. The sample included six multidisciplinary, community learning disability teams and 11 managers of small homes for residents who had learning disabilities. Data were collected through focus group and individual semistructured interviews. Levels of collaboration between primary health care groups and the community learning disability teams and the managers of small homes were assessed. Questions were focused upon the importance of primary health care and the key care provider within the community setting. Although some good experiences were recorded, the overall levels of collaboration were poor. Health care was perceived as very important by all of the respondents. The general practitioner (GP) as the coordinator of health care was perceived as the normal model within our health care system but the majority of respondents questioned the effectiveness in relation to their own experiences of accessing health care for people with learning disabilities. The relocation of this role to the learning disability nurse was perceived as a possible solution.     

Primary prevention among working age USA adults with and without disabilities

Purpose. Health promotion and disease prevention among people with disabilities are often overlooked. The objective of this article is to determine if working age adults with disabilities differ in healthy behaviours from those without disabilities.

Method. Behavioural Risk Factor Surveillance System data (2003) were used to assess healthy behaviours among 201,840 community dwelling working age adults.

Results. People who reported activity limitation irrespective of assistive device use were more likely to be overweight and to smoke than people without a disability. The prevalence of heavy alcohol and insufficient fruit and vegetable consumption was significantly lower among those who used an assistive device irrespective of activity limitation compared to the No Disability Group. Adults in all disability groups were significantly more likely to report physical inactivity compared to the No Disability Group. Lower alcohol consumption and physical inactivity findings were accentuated when the disabled were not working.

Conclusions. There is evidence that people with a disability report poor lifestyle behaviours that increase disease risk and may need assistance with smoking cessation, weight loss and adoption of a physical activity routine. Screening for unhealthy behaviours and advice should be incorporated into routine health care visits for working age adults with disabilities.     

Perspectives of women with disabilities on reaching those who are hard to reach.

Healthcare needs of women with disabilities are often neglected, even for women who are well connected to the community and to the healthcare system. So-called "hard-to-reach" women, whose degree of disability impedes use of community resources, have even greater difficulty obtaining health care. The purpose of this study was to gain insight into the perceptions of women with mobility and sensory limitations about several healthcare issues that may affect them: barriers to obtaining care, sources of information about health issues, ways to improve access to care, and ways to help hard-to-reach women overcome barriers to health care and health information. Researchers conducted six focus groups, comprising 43 women with limitations of mobility, hearing, or vision. To validate the women's input, researchers conducted two additional focus groups: the first comprised female physicians with special interest in the health care of women with disabilities, and the second included professional administrative staff of agencies that provide services for people with disabilities. In several cases, members of the physician and agency focus groups were themselves women with disabilities. In addition, 16 women with disabilities participated in an online survey; their responses were used to validate the findings of the face-to-face focus groups. Transcribed data were content analyzed and 10 themes identified. Seven of those themes are discussed in this article: communication barriers; lack of knowledge and awareness among healthcare providers; access issues; working the system; system issues; outreach to healthcare providers; and reaching hard-to-reach women. The findings of this study can provide direction to development of more effective outreach to hard-to-reach women with disabilities, resulting in better integration of healthcare services for this population.     

Caring for inpatients with learning disabilities

People with learning disabilities are more than twice as likely as the rest of the population to experience ill health, yet their health needs are often poorly met. This article describes the implementation and evaluation of an education project, led by community learning disability nurses, to improve the care of patients with learning disabilities in hospital.     

Family nursing and parents who have a learning disability

Parents who have learning difficulties pose profound questions to the philosophy and practice of family nursing. Failure to recognise how care delivery needs to change in the context of parents with a learning disability can perpetuate discrimination and inequalities for adults and their children. In this paper we explore the neglected topic of adults who have learning disabilities and the problems they face when they become parents. We examine the issue of the rights of adults with learning disabilities and illustrate that when these rights are not upheld they increase the vulnerability of the adults and their children. The implications of these issues are highlighted in the context of children's nursing practice.