An education programme for social care staff: improving the health of people who have a learning disability and epilepsy

This article will describe and examine course feedback from a local training initiative, which contributes to the improvements in the health status of people with a learning disability, who have epilepsy. The aim is to analyse how an education programme that focused on epilepsy and its management, together with a borough wide epilepsy protocol developed the skills of the local workforce. This education programme provided a framework for social care staff, enabling them to work both safely and effectively in their support of individuals with learning disabilities that have epilepsy. Learning disability nurses led this training initiative, in response to the health needs of people with learning disabilities. Success was achieved through the collaborative working across a number of agencies and through consultation with family carers and people with learning disabilities. For the purpose of this article the term social care staff refers to people employed within the community residential/day services both in statutory and nonstatutory agencies.     

An ‘Ordinary’ Life for People with Learning Disability and Severe Sensory Impairment?

While life in small, ordinary type homes in the community is seen as desirable for the majority of people with learning disability, it may not serve the special needs of people with more complex impairment, such as those with additional severe sensory impairment. The case is made for retention and development of specialised residential provision for this group of people and for specialised service centres. This is on the condition that, firstly, such services see their function as the provision of intensive specialist help which equips people to make use of community services, as well as that of providing more permanent care for those whose severity of need requires it. Secondly, that they act as resource centres of ideas and practice which provide training for staff who work in a wide variety of situations with people with sensory impairment. Parallels are drawn between meeting children's special educational needs and the special needs of adults with learning disability. A flexible continuum of provision is seen as desirable to meet the diversity of need.     

Direct service staff and their perceptions of psychotropic medication in non-institutional settings for people with intellectual disability

Previous studies have surveyed a variety of service providers in school and institutional settings, and reported a pervasive lack of education and training with regard to the use of psychotropic medication in people with intellectual disability. Because an increasing number of people with intellectual disability are living in the community and since many of these people receive psychotropic medications, the present study extended research in this area by surveying direct service staff to determine their perceptions, knowledge and opinions with regard to the use of psychotropic medication in non-institutional settings for individuals with developmental disabilities. Consistent with the findings of previous studies, a majority of the 334 respondents in the present study reported that they had not received adequate training in the area of drug treatment. The knowledge and skills deficits of direct service staff appear to represent a significant barrier to the appropriate monitoring and management of pharmacotherapy for individuals with intellectual disability. Therefore, a systematic training programme to educate direct service staff about psychotropic medication needs to be designed, implemented and disseminated on a broad scale.     

Alcohol problems and intellectual disability

The present paper discusses some of the difficulties in working with people with an intellectual disability and an alcohol problem, and draws on the sparse literature about alcohol problems in people with intellectual disability. Four individuals drawn from the current clinical case loads of medical practitioners in UK community intellectual disability services are described. Some suggestions for staff training, patient education and health promotion, and therapeutic approaches are made.     

Residential Staff: How They View Their Training and Professional Support

The needs and views of 86 community residential staff, supporting people with a learning disability, were investigated. Questionnaire items were developed from the agency's induction program and NVQs for residential, domiciliary and health care services. They were divided into four categories: direct support skills, background knowledge, values and philosophy of service provision, organisational/operational knowledge. Items were rated along three dimensions: importance, preparation and usefulness. Staff also reported on opportunities for professional development, appraisal processes and support structures, their expected tenure, the operation of the agency and the needs of clients. The findings highlight the priorities that staff attach to various aspects of their training and the degree to which they believe they have been prepared to undertake their work. Suggestions are made for the planning of induction and in-service training and the development of staff support structures.     

Use of specialist occupational therapists within residential learning disabilities: a justified case?

The principles of ‘social role valorization’ ( Wolfensberger 1983 ) advocate access to general primary health and social care facilities for individuals with learning disabilities alongside the rest of the population. Throughout the UK, there has been a variety of responses to employing specialist staff for people with a learning disability. Specialist learning disability occupational therapists with specific experience and skills in learning disabilities are employed by some National Health Service (NHS) trusts, whereas generalist occupational therapists with skills in assessing and providing intervention for issues concerning physical disability are employed by other trusts and social services departments. This article presents the findings of a small‐scale study of the use of specialist occupational therapists in residential homes within one NHS trust. It presents the views of community staff regarding their clients' needs in relation to specialist and generalist occupational therapy input. Recommendations are provided for the possible use of specialist and generalist occupational therapists for the clients and staff within community learning disability residential health and social care homes.     

Assessing and Meeting Needs in HIV and Learning Disability

The aim of this paper is to identify progress and explore issues in relation to HIV prevention and safer sex education for people with learning disabilities. A number of practical, conceptual and political questions surface in relation to assessing and meeting needs in HIV and learning disability. These raise dilemmas for those involved in commissioning services, developing safer sex educational resources or providing safer sex education. The imperative in HIV prevention is to target messages on people who are most at risk of HIV infection, namely men who have sex with men. This paper argues that effective HIV prevention must be relevant to people's lives and behaviours; it has to involve empowerment and therefore sexual and service politics. As a consequence lessons from safer sex and sexual health work by gay men could be used to inform HIV prevention work in learning disability. The paper identifies and outlines these areas and the range of services and interventions available for taking work forward. The ideas and arguments presented have been developed from needs assessment work, reviewing educational resources in staff training and work developing a sex education and staff training resource on HIV and learning disability.     

Working in the public and private domains: staff management of community activities for and the identities of people with intellectual disability

In addition to describing how the concept of stigma continues to be a pervasive influence in encounters between people with intellectual disability and others, the present study suggests that the management of this situation has passed into the control of care staff. An ethnographic study of young adults and community relationships suggests that the activities of staff are crucial in shaping the social profile of people with intellectual disability. The views of care staff about the taken‐for‐granted rights which characterize presence and participation in the community domain encourage them to adopt a semi‐insulation approach to their work. Staff extend this approach by adopting information control strategies to conceal important information from students. The present author argues that there is a need for on‐going research into staff activity in the community domain.     

Primary Healthcare for People with a Learning Disability

The growth in the number of people with learning disability living in the community presents a major challenge to primary care services. There is a high prevalence of physical and mental illness among these patients, but disorders may be inadequately managed. This reflects problems of access to primary care services, and problems of liaison between services. Policy options for improving primary healthcare provided to people with a learning disability include: specific monitoring by FHSAs; improved training; clarification of responsibility for medical care; regular medical examinations; and improvements in information systems.     

Challenges of residential and community care: 'the times they are a-changin'

This paper seeks to examine a number of issues which relate to the provision of appropriate and high-quality residential and community care for people with an intellectual disability. A number of key themes emerging from this Special Issue of the Journal of Intellectual Disability Research are identified and explored: (1) normalisation; (2) inclusion; (3) choice; and (4) regulation. It is concluded that the research community has an obligation to assume a higher profile at a time when the quality of life of people with an intellectual disability and their families is under threat. This can be done in a number of ways through: (1) the establishment of demonstration projects, either independently or in association with the voluntary and statutory sector, to explore innovative and practical approaches of enhancing the quality of services offered to people with an intellectual disability; (2) looking at ways of improving the quality of training programmes for care staff by moving away from current approaches that emphasise narrow instrumental competencies to strategies that develop essential expressive and relational aspects of care practice; and (3) offering a more considered and rigorous critique of current professional practice and assuming a leadership role at a time when leadership in this field is lacking.     

The use of psychotropic medication with adults with learning disabilities: survey findings and implications for services

This paper describes the findings of a survey into prescribing of psychotropic medication with adults with learning disabilities in a British city. A self‐completion questionnaire was sent to staff in dispersed housing and community learning disability teams to gather information about the number of people prescribed psychoactive medication, the type of medication prescribed, General Practitioner and Consultant Psychiatrist visits. The survey identified 55 people who were prescribed psychotropic medication. Of these, 89% were prescribed antipsychotic medication, whilst 47% were prescribed antidepressants. Forty‐four per cent were prescribed more than one category of psychotropic medication, whilst 22% were prescribed more than one antipsychotic medication. Worryingly, a clear diagnosis was not provided in a large proportion of cases. The survey has informed a number of service developments, which are briefly described.     

Sexual Abuse within Services for People with Learning Disabilities

This study was concerned with ascertaining the extent to which staff working with people with learning disabilities are aware of issues around the topic of sexual abuse. A questionnaire was completed by 107 staff from day care and residential facilities at both Health Authority and Local Authority services. The data generated indicated that nearly a third of staff (32%) never discuss the subject in their worksettings despite the fact that all felt people with learning disabilities to be at risk of sexual abuse, with the majority (68%) believing them to be at a higher degree of risk than other people. The majority of staff (88%) felt that further information should be provided in their workplaces. The implications of these data are considered with respect to staff training, support and empowerment.     

Working with organizations to implement dementia awareness training for public contact staff

People with dementia living in the community interact with a range of people who provide services to the public. Within these interactions, there may be communication problems associated with symptoms of the person's dementia. Problems include memory loss, difficulty communicating clearly, inability to grasp complex ideas, and problems handling money. This article describes a project that set out to promote training in dementia awareness for public contact staff with the expectation that it would help them better cater to people living with dementia. We worked with a police service, members of a city council, and staff of community pharmacies. This report provides suggestions about appropriate learning outcomes and program content and recommends steps to help others set up similar education programs.     

Staff characteristics and attitudes towards the sexuality of people with intellectual disability(*)

Background The identification of individual staff characteristics that have a relationship with specific attitudes of staff caring for people with intellectual disability (ID) may enable targeted training and better support. Method Sixty-six participants from services for people with ID in metropolitan Melbourne, Australia, completed a survey, including the Attitudes to Sexuality Questionnaire (Individuals with an Intellectual Disability; Cuskelly & Gilmore, 2007 ). Results Staff attitudes towards the sexuality of people with ID were quite positive. Age, program agency position, and training uptake were all associated with positive staff attitudes. Conclusion Targeted training programs in sexuality can benefit direct care workers in general, and older staff more specifically. Emphasis is warranted in the area of training for managing male sexual behaviours.     

Staffing and staff performance in services for people with severe or profound learning disability and serious challenging behaviour

Eighteen people with severe or profound learning disability and very serious challenging behaviour were tracked for four and a half years. Thirteen subjects moved to staffed houses in the community. A multiple time-series design and direct observation were used to evaluate whether there was any change in staffing and staffcontact. The houses had higher staff ratios and proportionately even higher levels of assistance and other contact with clients, who showed significant improvement in engagement in meaningilil activity without overall increase in major problem behaviour.     

Caring for people with learning disability: a survey of general practitioners' attitudes in Southampton and South‐west Hampshire

The aim of the present paper was to examine general practitioners' (GPs') beliefs about: the demands made on the primary care team by people with learning disability; their confidence in meeting health care needs and perceived training requirements; attitudes towards specialist or generic health service provision, and current contact with specialist teams; and attitudes towards screening in people with learning disability. A postal questionnaire was sent to a randomly selected partner from 95% of the practices in the Southampton and South‐west Hampshire Health District. Forty‐eight (75%) GPs responded and few were undecided about the demands placed on primary care teams, but beliefs were mixed. Most GPs were confident in dealing with the medical care needs of people with learning disability and the majority felt that training courses would not be worthwhile, except to learn more about specialist services where contact was very low and a ‘link worker’ scheme had had little apparent impact. Most respondents agreed that GPs should meet the medical needs of people with learning disability as part of general medical services and approximately half had a positive attitude towards providing regular health checks. Respondents were cautious about offering cervical cancer screening to women with learning disability. A small minority suggested that they would take no action to follow up a non‐attendance for mammography. As a heterogeneous population, it is not surprising that GPs' attitudes vary widely. Further research is required to establish the nature and scale of demands made on primary health care teams, and to evaluate systematic means of addressing health care needs of people with learning disability.     

Community participation of people with an intellectual disability: a review of empirical findings

Study design A systematic review of the literature. Objectives To investigate community participation of persons with an intellectual disability (ID) as reported in empirical research studies. Method A systematic literature search was conducted for the period of 1996–2006 on PubMed, CINAHL and PSYCINFO. Search terms were derived from the International Classification of Functioning, Disability and Health. Three investigators assessed the relevance of the initially identified studies using predefined content and methodological selection criteria. Included domains of community participation were: (1) domestic life; (2) interpersonal interactions and relationships; (3) major life areas; and (4) community, civic and social life. Results Of 2936 initial hits, 23 quantitative studies eventually met the selection criteria and were included in the study. Only two studies are based on a theoretical framework. Research instruments were various and were most often ad hoc and not validated. The average number of persons in the social network of people with ID appears to be 3.1, one of them usually being a professional service staff member. People with ID are 3–4 times less employed than non‐disabled peers; they are less likely to be employed competitively and are more likely to work in sheltered workshops or in segregated settings than those with other disabilities. People with ID are less likely to be involved in community groups, and leisure activities are mostly solitary and passive in nature. Most of the people with ID had been accompanied in an activity by training/therapeutic staff. Conclusion It can be concluded that on the basis of empirical evidence, within the time frame of this literature search, little is known about community participation of people with ID. Many researchers did not clearly define community participation and were concerned with limited areas of community participation; research is seldom based on a theoretical framework. Most studies focus on people with mild ID, and there are few reports of the subjects' sample. However, one conclusion can consistently be drawn from the review: people with ID living in community settings participate more than people living in a segregated setting, but their participation level is still much lower than non‐disabled and other disability groups.     

Attitudes of general practitioners towards health care for people with intellectual disability and the factors underlying these attitudes

An intellectual disability attitude questionnaire was used to explore the attitudes of general practitioners (GPs) towards primary health care, organizing health promotion and the role of specialist services for people with intellectual disability. The results of this questionnaire from GPs in Gwent (Wales) and GPs in west Gloucestershire (England) were compared. The GPs in both areas responded similarly and tended to agree that they were responsible for the medical care of people with intellectual disability in the community. They also tended to feel that the move from hospitals to the community of people with intellectual disability would greatly increase their workload. The GPs in both areas were generally against a responsibility on their part for health promotion and health screening initiatives for people with intellectual disability. However, GPs in west Gloucestershire felt more strongly against these issues. Further analysis of the data revealed factors which influenced the response of GPs to the questionnaire, including their position regarding health promotion and screening, and their view of the role of specialist health services. The GPs generally felt that community learning disability teams provided useful support, and there is clearly scope for team members to liaise more closely with GP practices and to provide helpful information to GPs about intellectual disability and the specialist health services available. Professionals seeking to work collaboratively with GPs should be sensitive to their workload pressures and to their attitudes towards health promotion initiatives and health screening.     

“SKILLS TO SHARE”

This paper looks at the preparation of direct care staff who, after an initial three-week orientation period, went on to work in the community with young people who are severely mentally handicapped, all of whom had previously been residents of Northgate Hospital. In order to move children and young people who are severely mentally handicapped back into the community, it is essential to devise a staff training programme which recognises the need for them to be seen in a positive way. This paper briefly describes the underlying values of the training period, its planning and content, and the project itself.     

Psychiatric inpatient units for children and adolescents with intellectual disability

Background Inpatient beds for the psychiatric assessment and treatment of young people (under the age of 18 years) with intellectual disability have become scarce although there is pressure to redevelop them. In the UK, 63% of the NHS beds are at Prudhoe Hospital. This study examines their rôle and utility in relation to community services, both local and national. Method A case note study of the 96 young people admitted over three years was supplemented by a standardised interview canvassing the opinion of the staff involved, both within the units and in the community. Results Two groups emerged: those with more severe disability who were admitted for neuropsychiatric management (63%) and those, predominantly adolescent, whose problems were closer to mainstream psychiatry but whose intellectual disability prevented their needs being met adequately by mainstream services (37%). Admissions were equally divided between those from the immediate vicinity and nationally. For 43% the primary aim was to disentangle the extent of the environmental effect on the individual: the remainder were admitted for various reasons including, for example, the need to protect the individual from harming themselves or others, unusually complex or hazardous treatment or the carers inability to cope with the treatment plan. All admissions were thought appropriate but, had the community resources been better, 18% were avoidable. Conclusions Admission is necessary for a small number of young people who are not readily managed within mainstream units. While the number may be reduced by better community provision, this is likely to partially offset by better case finding. Inpatient facilities should be closely linked with community services; a point reinforced by the prolongation of admissions because a shortfall in community resources.