Individual Characteristics and Service Expenditure on Challenging Behaviour for Adults with Intellectual Disabilities

Background English policy argues that people with intellectual disabilities should be supported in their local communities. There is considerable evidence that this aspiration is not being achieved. This paper seeks to look at the subsection of people with intellectual disabilities who have expensive care needs because of challenging behaviour, to identify the decision‐making processes that have led to current service provision and expenditure and to suggest improvements. Materials and Methods We carried out a survey within five North London boroughs to investigate the characteristics of a cohort of people with intellectual disabilities and challenging behaviour in high‐cost accommodation (over £70 000/annum). Postal questionnaires and face‐to‐face interviews were conducted with stakeholders with intellectual disabilities and patterns of current costs were estimated from existing data provided by the commissioning authorities in the five boroughs. Results Two hundred and five individuals with intellectual disabilities and challenging behaviour were identified. They were accommodated in placements provided by 97 separate providers, both in and out‐of‐area. Those more likely to be placed out‐of‐area were younger, had multiple health problems, significant challenging behaviour and mental health problems including autistic spectrum disorders. The local community intellectual disabilities teams identified a number of difficulties in meeting the needs of those service users. Conclusions Expenditure on all placements for service users with intellectual disabilities is significant. There is a notable lack of investment in local service development. A coherent approach is required, often across service boundaries. The authors suggest a model for targeted investment aimed at supporting effective local services, and reducing the need for and expense of out‐of‐area placements.     

Resources,Staff Beliefs and Organizational Culture: Factors in the Use of Information and Communication Technology for Adults with Intellectual Disabilities

Background Access to, and the use of, information and communication technology (ICT) is increasingly becoming a vital component of mainstream life. First‐order (e.g. time and money) and second‐order factors (e.g. beliefs of staff members) affect the use of ICT in different contexts. It is timely to investigate what these factors may be in the context of service provision for adults with intellectual disabilities given the role ICT could play in facilitating communication and access to information and opportunities as suggested in Valuing People. Method Taking a qualitative approach, nine day service sites within one organization were visited over a period of 6 months to observe ICT‐related practice and seek the views of staff members working with adults with intellectual disabilities. All day services were equipped with modern ICT equipment including computers, digital cameras, Internet connections and related peripherals. Results Staff members reported time, training and budget as significant first‐order factors. Organizational culture and beliefs about the suitability of technology for older or less able service users were the striking second‐order factors mentioned. Despite similar levels of equipment, support and training, ICT use had developed in very different ways across sites. Conclusion The provision of ICT equipment and training is not sufficient to ensure their use; the beliefs of staff members and organizational culture of sites play a substantial role in how ICT is used with and by service users. Activity theory provides a useful framework for considering how first‐ and second‐order factors are related. Staff members need to be given clear information about the broader purpose of activities in day services, especially in relation to the lifelong learning agenda, in order to see the relevance and usefulness of ICT resources for all service users.     

Quality of Life Outcomes for People with Intellectual Disabilities Living in Staffed Community Housing Services: a Stratified Random Sample of Statutory,Voluntary and Private Agency Provision

Background Small scale, community‐based, staffed housing is a significant form of residential provision for people with intellectual disabilities. Such services are provided by health and local authorities, and voluntary and private agencies, yet little is known about how provision varies between provider sectors. Methods This study compared sectors in terms of the processes operating within residential services, and objectively and subjectively assessed quality of life (QOL) resident outcomes. Measures of setting structure and processes and resident outcomes were undertaken on a stratified random sample of 47 small scale, community‐based residential settings which accommodated a total of 154 people with intellectual disabilities. Results In general, provider agencies did not differ in terms of the characteristics of the residents they served, the structure of settings, the processes underlying service operation or resident outcomes. However, across agencies there was considerable variation in residents' life conditions when they were measured objectively. Better outcome tended to be significantly correlated with the ability of residents. This was not the case with results on subjective measures (which were also higher than those on objective measures). Conclusions The results reinforce the need to design services which effectively support people across the ability spectrum. Also, an argument is made for the continued utility of objective measurement in the assessment of service quality.     

Paying the Piper and Calling the Tune? The Relationship Between Parents and Direct Payments for People with Intellectual Disabilities

Background The aim of this paper is to investigate the role parents are playing in direct payments provision for their son or daughter with intellectual disabilities. Materials and methods The paper draws on a UK‐wide inclusive research project, carried out by researchers who were members of an organization of people with intellectual disabilities. The purpose of the project as a whole was to explore what support works best for people with intellectual disabilities to access direct payments provision in the UK, and one of the key supports for certain people was found to be parents and families. Results Drawing on interviews with 29 family carers, the researchers found that parents were often strong advocates of independence for their son or daughter, and only acted as barriers to direct payments when they did not have sufficient information. Parents were found to be playing significant roles as initiators, managers and supporters of direct payments for their son or daughter; however, these roles were matched by important gains in quality of life and relationships within the family. Conclusions The paper considers the implications of the power balance between persons with intellectual disabilities, their parents and their staff. Direct payments can alter that balance radically, but it is still important to have a good, independent direct payments support scheme to enable the person with intellectual disabilities to be in control.     

Palliative care provision for people with intellectual disabilities: a questionnaire survey of specialist palliative care professionals

There is a growing interest in the palliative care needs of people with intellectual disabilities (ID). There are indications that palliative care staff face particular problems providing care to this group, but empirical data about the extent of the problem are lacking. This study aims to gain insight into the current use of palliative care services by people with ID in London, to identify the prevalence and severity of problems faced by palliative care professionals and to identify strategies that will facilitate an improvement in access and delivery of palliative care services to people with ID. A postal questionnaire was developed for this study and returned by 543 professionals working in 53 specialist palliative care services in London (57% response rate). Sixty-seven percent of respondents had supported a patient with ID at some point in their palliative care career. Problems arising from the patient's difficulty in understanding the illness and treatment were reported as the most pertinent. Other prevalent problems included difficulty around communication, assessment and patient fear. Respondents emphasised the need for collaboration with carers and other services. Link worker schemes, training and access to background information were seen as most helpful. The authors conclude that palliative care services appear to be under-used by people with ID. There is a distinct set of problems related to the provision of palliative care for people with ID. Palliative care services should assess the nature and level of their service provision for people with ID. Future research should include epidemiological studies to assess need and include people with ID as informants to evaluate the effectiveness of palliative care provision.     

Stakeholder perspectives on intensive support teams for adults with intellectual disabilities who display behaviour that challenges in England

Background

Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs.

Method

Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent).

Results

Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models.

Conclusions

ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community.     

End‐of‐Life Care for People with Intellectual Disabilities: Paid Carer Perspectives

Background Little is known of paid carers’ perspectives when caring for people with intellectual disabilities at the end‐of‐life. Materials and methods Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results Participants wanted to provide palliative care and felt the experience enriched practice. However, they were inadequately prepared to meet need and this often led to staff stress. A number of issues appeared to heighten stress: situations when end‐of‐life care decision making was challenging, when staff felt ‘pushed out’ by relatives and when staff did not have sufficient support or time to provide care or mourn the loss of service users. Conclusions The study describes issues which contribute to the development of staff stress when providing palliative care and draws attention to areas where strategies should be developed in order to improve the quality of care provided to people with intellectual disabilities.     

Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities

Background Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers’ training needs on diet and physical activity. Methods A cross‐sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities. An interviewer administered questionnaire was used to examine carer knowledge of public health recommendations on diet and physical activity; perceptions of the benefits of healthy diets and physical activity levels; and the carer views on the barriers to change experienced by individuals with intellectual disabilities. Results Sixty‐three carers took part in the study. They generally had a low level of knowledge around public health recommendations on diet and physical activity. Greater importance was attributed to the health benefits of diet than physical activity. Carers rated intrapersonal barriers to change within the person with intellectual disabilities as more important, than interpersonal or external barriers to change, with significant differences in perceived barriers relevant to diet and physical activity. Conclusions Carers supporting adults with intellectual disabilities have significant training needs relevant to promoting healthy lifestyles. This highlights the opportunity to promote health improvement via the development, and provision, of effective training initiatives.     

A Randomized Controlled Trial of a Specialist Liaison Worker Model for Young People with Intellectual Disabilities with Challenging Behaviour and Mental Health Needs

Background Twenty six young people with intellectual disabilities and mental health needs from Pakistani and Bangladeshi communities were recruited as part of a bigger study to examine the effectiveness of a liaison worker in helping young people and their families access appropriate intellectual disabilities and mental health services. Method Twelve young people were randomly allocated to the treatment group, which had the help of the liaison worker, and 14 young people were allocated to the control group without the help of a liaison worker. Baseline measures were undertaken with all the young people and their carers. This was followed by a 9‐month trial, consisting of the liaison worker helping the treatment group to get in touch with and take up appropriate services, mainly in the areas of psychiatric appointments, benefits advice, house adaptations, leisure facilities and support and care for the young person. The control group participants did not have the access to the liaison worker and were accessing services using the normal routine. Assessments were carried out post‐treatment to assess whether the use of a liaison worker had had any effect on outcomes for the two groups. Results Twelve young people completed the study in the treatment group and 14 in the control group. Participants allocated to the specialist liaison worker had statistically significantly more frequent contact with services and with more outcomes, than the control group, and significantly lower scores on the Strengths and Difficulties Questionnaire (SDQ). Conclusion The use of specialist liaison services in ensuring adequate access to services for young people with learning disabilities and mental health needs from the South Asian community proved to be significant and effective compared with young people and their families accessing services on their own.     

Identity Conflict in People with Intellectual Disabilities: What Role do Service‐providers Play in Mediating Stigma?

Background This study explores the relationship that the people with an intellectual disability have with their ‘learning disabled’ identity and the influence of intellectual disability services on this relationship. Methods Information was collected using three methodologies: (1) audit of referrals to a community psychology service for people with intellectual disabilities; (2) service‐users focus group; (3) survey of the attitudes of intellectual disability service‐providers. Results The results indicate that the conflict about an intellectually disabled identity may be an area of unmet need in services for people with intellectual disabilities. Conclusions There is a need for careful consideration of the ways in which this identity is managed by service‐providers.     

Roles of General Practitioners in the Provision of Health Care Services for People with Intellectual Disabilities: A National Census in Taiwan

Aims The aims of the present study were to explore the perceptions of general practitioners (GPs) in the provision of health care services for people with intellectual disabilities and to analyse GPs’ priorities in the delivery of health care services to this group of people in Taiwan. Methods The study employed a cross‐sectional design and was conducted by a census method, the aim being to collect information from all GPs in Taiwan. A questionnaire was mailed out, between 10 April 2006 and 16 June 2006, and the responses provided by 331 GPs (response rate = 16) were included in the analysis. Results The results showed that most of the respondents did not have sufficient experience to deal with patients with intellectual disabilities and lacked adequate knowledge about intellectual disabilities. Indeed, respondents expressed the need for on‐the‐job training in the field of intellectual disabilities and generally agreed that their role in providing health care services for people with intellectual disabilities was important. However, they were generally not satisfied with the achievements of their role on health care issues. The study highlighted that many issues need to be prioritized for people with intellectual disabilities in relation to policy planning at different health care stages (primary, secondary and tertiary health care). The results also revealed that those senior GPs with considerable experience in treating people with intellectual disabilities were more likely satisfied with their role in providing health care for this group of people. Conclusions It is concluded that Taiwanese health and welfare authorities need to focus more carefully on issues concerning deficiencies in the training of GPs, and to employ appropriate strategies to address health care issues raised in the present study so as to improve the quality of care for people with intellectual disabilities.     

Attitudes towards Sexuality,Sterilization and Parenting Rights of Persons with Intellectual Disabilities

Background and Methods We review articles pertaining to attitudes towards sexuality, sterilization, procreation and parenting by people with intellectual disabilities. Most empirical studies were conducted after the appearance of the principles of normalization and role valorization in the 1970s. Results Across studies, special education teachers and university students appear to hold more positive attitudes towards sexuality and sexuality education programs than parents and service workers. People with intellectual disabilities have conservative attitudes towards sexual intercourse and homosexuality, but may be accepting intimate contact by familiar persons. Despite the ban on involuntary sterilization, it appears that many parents and teachers of persons with intellectual disabilities still support it as a form of contraception, especially for persons with severe intellectual disabilities. Likewise, attitudes towards parenting by persons with intellectual disabilities remain negative, and these attitudes may adversely affect the provision of competency‐enhancing supports and services for parents with intellectual disabilities and their children. Conclusions It is recommended that new studies should be undertaken, comparing attitudes across different groups involved with persons with intellectual disabilities and examining the impact of prejudicial attitudes on sexual expression and parenting by persons with intellectual disabilities.     

Constructing Adulthood in Discussions About the Futures of Young People With Moderate‐Profound Intellectual Disabilities

Background This study examines how those planning futures for young people with moderate‐profound intellectual disabilities invoke, deploy and interpret contrasting definitions of adulthood and perceived capacity for autonomy and self‐determination. Methods Twenty‐eight young people were followed through transition from children’s to adult services. This paper incorporates data from interviews with young people, their carers and transition staff. Results Two discourses around adulthood were identified. One positioned the young people as adults entitled unequivocally to self‐determination, invoking policy injunctions to do so. The second qualified the young people’s adult status and claims to self‐determination, emphasising the obdurate reality of intellectual disability. Conclusions Transition to adult services for young people with intellectual disabilities raises difficult questions about the relationship between vulnerable young people, families, professionals and society. Reducing these to rigid moral polarities of ‘right’ and ‘wrong’ creates an unhelpful context for good decision making. A more constructive approach would include all stakeholders in discerning ‘the right thing to do’.     

Palliative care for disadvantaged groups: people with intellectual disabilities

Abstract

People with intellectual disabilities are among the most socially excluded and vulnerable groups in Ireland today. They are at increased risk of early death and they receive poorer health care than the general population. The World Health Organization has pointed out that inequalities in service provision to this group extend to the delivery of palliative care. The population of people with intellectual disabilities is an ageing one, and its changing demographics challenge services that were originally developed for children and young adults and that focused on enabling their clients to lead full and productive lives. Conditions such as cancer, cardiovascular and respiratory disease are now leading causes of death, and this has important implications for service planning. Although the population is relatively small, its needs demand high priorities in the healthcare services. This is because many people with intellectual disabilities need support throughout their lives and have longer and more intense involvement with services than the vast majority of citizens. People with intellectual disabilities are people first, and should be recognised as individuals, rather than on the basis of definitions. However, there is reason to assess their palliative care needs as a client group. This is because people with intellectual disabilities not only have the universal palliative care needs of the general population, but also have additional and special needs. This paper reviews the palliative care needs of people with intellectual disabilities, dealing with such issues as symptomatology, communication and family dynamics. It draws attention to the gaps that currently exist in end-of-life care services for adults with intellectual disabilities and concludes that a partnership approach between the intellectual disability and palliative care services will be needed in order to provide effective patient-centred and family-oriented care.     

The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan

Background Taiwanese family carers of people with intellectual disabilities not only suffer from long‐term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods A census interview survey was conducted in Hsin‐Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL‐BREF Taiwan‐version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results The mean score for ‘physical’ was highest and that for ‘environment’ was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.     

Caring for adults with intellectual disabilities: perceived challenges for nurses in accident and emergency units

AIM: This paper reports a study exploring the experiences of nurses in accident and emergency units caring for people with intellectual disabilities. BACKGROUND: People with intellectual disabilities are increasingly in contact with healthcare professionals in accident and emergency units. Often this contact occurs within the accident and emergency service, an area in which staff care for a diverse range of people. The experiences of people with intellectual disabilities within acute general hospitals in the United Kingdom and internationally has largely been reported as quite negative. Conversely, little is known about the experiences of nurses working in acute general hospitals, nor the exact nature of any challenges they encounter, in providing care to people with intellectual disabilities. This lack of understanding weakens opportunities for nurses to reduce barriers to providing an equitable service for people with intellectual disabilities. METHOD: Five focus groups were conducted with 27 accident and emergency nurses from five hospitals in Northern Ireland in the spring of 2004. The data were then coded and recurring themes identified. FINDINGS: This paper focuses on two themes: lack of knowledge of the nature of intellectual disability and dependence on carers. Whilst these themes have been acknowledged in the existing literature, they have received limited attention and exploration. The experience of fear and vulnerability was considered by participants to be a consequence of their lack of knowledge. The experience of these emotions is viewed as a key factor in nurses' over-dependence on patients' informal carers. CONCLUSION: Increased awareness is needed among professionals in accident and emergency units of the abilities and needs of people with intellectual disabilities.     

Representation of People with Intellectual Disabilities in a British Newspaper in 1983 and 2001

Background Media representation of people with intellectual disabilities may contribute to general perceptions held about them and reflect changes in policy and service provision. Materials and Methods Articles from The Guardian newspaper in 2001 were analysed and compared to a previous analysis of material published in 1983. Results There was much more coverage of people with autism or Down syndrome than expected from their actual frequency in the British population of people with intellectual disabilities. Newspaper reports continued to be about children more often than expected when about autism or Down syndrome, but not when about people with other intellectual disabilities. Medically related representations were less than in the past but juxtaposition with other client groups continued. More ‘people‐first’ terminology was now used except in respect of people with autism. Articles systematically under‐represented complexity and severity of need. Conclusions Policy and service changes may have contributed to the decline of medically‐ and child‐related representations within non‐specific intellectual disabilities. The continued over‐representation of children in articles about autism and Down syndrome, and the generally increased reference to people with those syndromes, suggests growing differentiation within the population of people with intellectual disabilities. The focus on people with less severe or complex disabilities echoes criticisms of Valuing People.     

Factors influencing the use and provision of respite care services for older families of people with a severe mental illness

Family carers of people with a severe mental illness play a vital, yet often unrecognized and undervalued role in Australian society. Respite care services can assist these family carers in their role; however, little is known about their access to these services. The paper addresses this knowledge gap. An exploratory field study was conducted throughout the eastern suburbs of Sydney, Australia, to identify and examine the factors influencing the use and provision of respite services for older carers of people with a mental illness. Semistructured, in-depth interviews, and structured self-completed questionnaires were conducted with older family carers, mental health care professionals, and respite care service providers. Additionally, relevant documents (local policies, strategic plans and reports on respite care) were reviewed. It was found that current respite services are problematic for older family carers of Australians with a mental illness, signalling the need for concerted efforts by carers, health professionals, and service providers to improve access. Changes to respite provision and utilization are recommended.     

A Comparison of Quality of Life Outcomes for People with Intellectual Disabilities in Supported Employment,Day Services and Employment Enterprises

Background Policy objectives for people with intellectual disabilities include day service modernization and the promotion of paid employment and quality of life. Quality of life is under represented as an outcome measure in vocational research. This research compares subjective and objective quality of life, and quality of work environment for adults with intellectual disabilities in supported employment, employment enterprises and day services with non‐disabled workers in community employment. Methods Comprehensive Quality of Life Scale, and Work Environment Scale were collected for people with intellectual disabilities: 17 supported employees; 10 employment enterprise workers; 10 day service attendees; and 17 non‐disabled work colleagues of supported employees. Results Supported employees reported higher objective quality of life than employment enterprise workers and day service attendees. Non‐disabled co‐workers reported higher objective quality of life and autonomy at work than the three groups of people with intellectual disabilities. Supported employees reported higher subjective quality of life than non‐disabled co‐workers. Conclusions The findings support the utility of supported employment as a means to provide constructive occupation and enhanced quality of life to people with intellectual disabilities. However, closing the gap with respect to non‐disabled co‐workers on objective quality of life measures represents a challenge and will require improving the quality of job finding and workplace support and the training provided.     

Specialist Versus Generic Models of Psychiatry Training and Service Provision for People with Intellectual Disabilities

Background Models of service provision and professional training differ between countries. This study aims to investigate a specialist intellectual disabilities model and a generic mental health model, specifically comparing psychiatrists’ knowledge and competencies, and service quality and accessibility in meeting the mental health needs of people with intellectual disabilities. Method Data were collected from consultant and trainee psychiatrists within a specialist intellectual disabilities model (UK) and a generic mental health model (Australia). Results The sample sizes were 294 (UK) and 205 (Australia). Statistically significant differences were found, with UK participants having positive views about the specialist intellectual disabilities service model they worked within, demonstrating flexible and accessible working practices and service provision, responsive to the range of mental health needs of the population with intellectual disabilities, and providing a wide range of treatments and supports. The UK participants were knowledgeable, well trained and confident in their work. They wanted to work with people with intellectual disabilities. In all of these areas, the converse was found from the Australian generic mental health service model. Conclusions The specialist intellectual disabilities model of service provision and training has advantages over the generic mental health model.