Adults with learning disabilities

Transcription

1 11 Adults with learning disabilities Background Learning disability is an umbrella term covering many different intellectual disabilities. It means that a person s capacity to learn is affected and that they may not learn things as quickly as other people. People with learning disabilities have a wide-range of health and social needs and this reflects the wide spectrum of severity of learning disabilities and the different conditions that co-exist. Generally people with learning disabilities receive their care in the community a small proportion, under 10,000 nationally in 2000, will be in NHS hospitals and units. (1) The health and social needs of people with learning disabilities are also influenced by wider determinants such as poverty, social exclusion, employment and housing. The information presented here draws on a mixture of national and local information and attempts to look at the needs of this population group. This chapter is the start of the process of a needs assessment and it is hoped that this work will be developed further. Policy context In 2001 the Department of Health published a White paper that set out a future strategy for people with learning disabilities. It emphasised that certain principles rights, independence, choice and inclusion should underpin the way forward. Valuing People emphasised the need for partnership working to deliver revised services and required Learning Disability Partnership Boards to be set up. A Learning Disability Development Fund was established to support the recommendations and a national Task Force was also formed. Since 2001 the latter has reported annually on progress made with implementation and on issues that remain outstanding. In December 2007 the government produced a consultation document Valuing People Now: from progress to transformation. (2) This document was seeking views on future priorities for the learning disability agenda, particularly around issues of personalisation/individualism, employment, health and housing. Defining learning disabilities The lack of a single definition of what is meant by learning disabilities results in different terms being used to describe an individual s condition. This can be a barrier to accurate communication between those planning and providing services, and sometimes definitions that are used need more careful consideration. Valuing People defines people with learning disability as having: l a reduced ability to understand new or complex information, to learn new skills (impaired intelligence) with l a reduced ability to cope independently (impaired social functioning); l which started before adulthood, with a lasting effect on development. 91

2 This definition covers a range of disabilities, including adults with autism who also have learning disabilities, but excluding those with a higher-level autistic spectrum disorder such as some Asperger s Syndrome. On these criteria, a low intelligence quotient, for example an IQ below 70, would not in isolation be a sufficient reason for deciding that an individual has a learning disability. Demographics In the UK there are no reliable measures for the prevalence of people with learning disabilities. Several studies have estimated the prevalence of all learning disabilities in England to be around 20 per 1,000 of the general population. (3,4) The OPCS study suggested that five would have moderate/severe learning disabilities and the rest mild learning disabilities. More recent epidemiological studies suggest the prevalence of moderate/ severe learning disabilities to be three or four per 1,000 (5) and prevalence of mild learning disabilities around 25 per 1,000 population. (1) On these numbers in Southwark there could be 607 to 809 adults (aged 20 years and over) with moderate/severe learning disabilities, and 5,287 adults with mild learning disabilities, Figure These differences in the prevalence rates could simply reflect differences in survey definition and methodology. Figure 11.1 Estimated number of people in Southwark with learning disabilities Source: extrapolated from Stevens & Raferty 6 Since April 2006, General Practices are encouraged, through the Quality and Outcomes Framework (QOF), to keep a register of adults with learning disabilities. They use the Valuing People definitions of disability described earlier. In Southwark (March 2007) 452 adults were on GP registers in primary care, a prevalence of 0.16 percent, against national register prevalence was 0.26 percent. The variation in calculated prevalence between practices ranged from zero to 3.9 percent. There are two factors that will depress the locally reported prevalence, numbers on GP lists are inflated, and the registers have only been recently introduced. Both these issues are discussed in more detail elsewhere. Gender, ethnicity and social class In childhood learning disabilities are more common in boys than girls, however, this ratio starts to change with age, as women tend to live longer than men. Evidence suggests there to be an increased prevalence of learning disabilities in the South Asian population. At the time of the 2001 Census Southwark s Asian population was about four percent. (5) 92

3 There is mixed evidence as to whether there is any link between learning disabilities and socio-economic groups. However, it is thought that people with learning disabilities are more likely to live in areas identified as socially deprived, determined by fewer opportunities for employment for both the individual with learning disabilities and also in the employment of their carer. Increased numbers of people with severe learning disabilities in some areas can be the result of past funding and placement practices, especially old long-stay patients. Summary of prevalence of people with learning disabilities The exact number of people with learning disabilities in Southwark is unknown. An estimate of the number of adults with severe learning disabilities may be obtained by local data sources on the number of people in contact with services or those receiving benefits. However, it is much more difficult to estimate the number of adults living in Southwark with mild learning disabilities. Table 11.1 applies the numbers suggested by various papers and research studies to estimate how many people in Southwark have learning disabilities. Results are quite variable. Table 11.1 Comparison of the prevalence estimates of adults with learning disabilities living in Southwark adults (20yrs+) with learning disabilities in Southwark all mild moderate/ source severe OPCS, ,046 3,035 1,011 Valuing People White Paper, 2001 n/e 5,287 n/e HCNA, 1994 (5) n/e 2,023 4, Institute for Health Research, Lancaster University, 2004 (4) 4,046 n/e n/e Local GP registers, March n/e n/e Source Institute for Health Research, Lancaster University (2004) Note: n/e indicate no estimate offered, not the absence of any disability Future numbers Valuing People suggested that the number of people with severe learning disabilities may increase by around one percent per annum for the next 15 years as a result of: l increased life expectancy, especially among people with Downs s syndrome; l growing numbers of children and young people with complex and multiple disabilities surviving into adulthood; l a sharp rise in the reported numbers of school age children with autistic spectrum disorders, some with learning disabilities; l greater prevalence among some minority ethnic populations of South Asian origin. We have already noted that there will be more older people with disabilities and more of these will have a more severe disability. Figure 11.2 shows the predicted growth in numbers of people aged over 50 living in Southwark with any learning disability and numbers with a moderate/severe disability. 93

4 Figure 11.2 Predicted numbers of people age 50 years and over with learning disabilities living in Southwark Source: Projecting Older People Population Information System (POPPI) Summary of health and social issues People with learning disabilities are 2.5 times more likely to have health problems than the rest of the population. Co-existing conditions may include mental illness, epilepsy, challenging behaviours, and sensory disabilities. (6) The profile of health needs of people with learning disabilities differ from those most commonly experienced by the rest of the population. The leading cause of death for the general population is from cardiovascular diseases; for people with learning disabilities the leading cause of death is respiratory disease (7), followed by cardiovascular disease but disease related to congenital heart disease rather than ischaemia. Four times as many people with learning disabilities die of preventable causes as people in the general population. (6) People with learning disabilities have a higher rate of mental illness than the general population one in three people with learning disabilities has problems with their mental health. (8) Rates of schizophrenia are thought to be three to four times those found in the general population. (5) Some genetic causes are associated with certain mental illnesses, such as dementia and depression in people with Down s syndrome. Many people with learning disabilities have development disorders including autism, hyperactivity, co-ordination disorders, and speech and language disorders. Twenty-two percent of people with learning disabilities are affected by epilepsy, compared to around one percent in the general population. The prevalence is greater amongst people with more severe learning disabilities. (8) The prevalence of sensory impairment amongst people with learning disabilities is also high. The reported prevalence of hearing impairment varies from 12 percent to 47 percent. For visual impairment, reported prevalence varies from 19 percent to 63 percent. (7) There are particularly high levels of visual problems in those with Down s syndrome and Fragile X syndrome. People with learning disabilities have high rates for, pneumonia and aspiration of food into the lungs. Possibly because people with learning disabilities are also more likely to live sedentary lifestyles, obesity is more common than in the general population, 35 percent compared to 22 percent. (9) They also often have poor dental health and oral hygiene. Surveys of both children and adults show more extractions, less restorative care and high levels of untreated need. (5) 94

5 Local services Southwark s Learning Disabilities services aims to meet the Valuing People Now objective by providing appropriate support to people with learning disabilities so that they can live as full and active a life as possible. To achieve this community, primary and social care services need the appropriate resources. Specialist community care teams Specialist care is provided in the Southwark community by an integrated community learning disabilities team (CLDT). The team includes community nursing, therapy, audiology services, social workers, and psychology/behavioural support service. Commissioned services During 2006/07, there were 776 adults with a learning disability receiving services commissioned through Southwark social care. All but six percent were aged less than 65 years. The ethnicity of 89 percent of these adults is known, Table The higher prevalence of learning disabilities in the Asian population, as suggested in the literature, is not shown in these data, however Southwark s Asian population is small. Table 11.2 Ethnicity of learning disability Southwark service users Learning disability service users (%) Southwark 2001 Census (%) White British White Irish Other White Black Caribbean Black African Other Black Asian Mixed Any other ethnic group Not stated 11.3 Source: Southwark 2006/07 Referral Assessment Packages of care return Of these clients 54 percent (420) received some residential care in the year 2006/07, all provided by the independent sector. Only six clients received some kind of nursing care, three-quarters received some community-based home care, Table Seventeen people received direct payments during the year. These are payments made to individuals, who have been assessed as needing services, and are to enable them to buy-in a service rather than have a social services provision. The aim is to provide the client with more choice and possibly receive a more flexible service. Subject to eligibility, access to direct payments should be universally available. There is some evidence that not all are aware that payments in lieu are available, and that others cannot access payment either due to a lack of information or the complexity of applying. 95

6 Table 11.3 Clients receiving community-based services, provided/commissioned by Southwark CSSR, by age & service, 2006/07 service type 16 to 64 over 65 Home care Day care Meals 4 1 Overnight respite; not in clients home 36 1 Direct payments 17 0 Professional support 66 1 Equipment & adaptations 3 1 Other Total clients Source: Southwark 2006/07 Referral Assessment Packages of care return During 2006/07, 496 existing clients had their provision reviewed. Thirty-nine new clients with a learning disability were assessed for care and half were provided with new services. (19) Eleven were not offered services following the assessment. In 2006/07, 299 Southwark adults with learning disabilities were living permanently in residential care homes, and two were in nursing care homes. Benefits People with learning disabilities, under the age of 65, may be eligible for a Disability Living Allowance (DLA). In February 2007 there were 970 people with learning disabilities in Southwark receiving DLA. This is more than are serviced by social services (776), possibly because DLA numbers will include some people with moderate/mild learning disabilities that do not receive any social services. As discussed in chapter 10, benefits data records claimants rather than entitlement, and for a variety of reasons some people who qualify do not apply for support. Met and unmet needs The health and social care needs of people with learning disabilities can be conceptualised on four levels as shown below: Strategic and public health needs requiring supports to enable healthy lifestyles, appropriate health improvement material and access to health screening programmes. Everyday health and social needs requiring primary care and social care services. Health and social needs related to having learning disabilities needing extra support and reasonable adjustments to be in place for services to be accessible. Complex health and social care needs related to profound learning and multiple physical disabilities, epilepsy, mental ill health or autistic spectrum disorders. Adapted from Health Needs Assessment Report: People with Learning Disabilities in Scotland, February In the time available it was not possible to produce a comprehensive analysis of the unmet needs of people with learning disabilities living in Southwark, nor obtain the views of clients, and local service providers. This will be important for the future understanding of the strategic need of clients. 96

7 However, it is possible to identify the sort of data that it would be useful to collect/research to strengthen future needs assessments of people with learning disabilities. In particular: l detailed information about hospital admissions, l frequency and nature of interaction with the GP, and possibly most difficult, l information about those that do not access services or do not claim a benefit to which they are entitled. Strategic & Public Health needs We have already seen how people with learning disabilities generally have different patterns of ill-health and mortality. Therefore many public health initiatives, even those that are completely accessible for people with learning disabilities, will have a smaller impact on them for example, smoking prevalence is much lower in this group; hence quit smoking initiatives will achieve less. Public health initiatives therefore need to target the leading causes of ill health and death in people with learning disabilities, and not doing this will widen the present life expectancy gap between this group and the general population. It is not known what the local screening coverage is for people with learning disabilities, but poor uptake of cancer screening has frequently been reported nationally. Reasons for this may be cognitive difficulties in understanding the benefits of screening, difficulty in obtaining consent for screening, difficulties with using the inflexible appointment systems and waiting rooms, poor liaison with specialist services, inadequate training of GPs in communication skills and pressure of competing demands from other groups of patients. Everyday health and social care People with learning disabilities should have the same rights of access to mainstream services as the general population. However, this is not always so since access to services is often hampered by their learning/communication difficulties. In generic services it is recognised that many staff have little understanding of learning disabilities. In primary care, GPs and practice nurses often feel they lack the necessary skills and training to deal with the health problems of people with learning disabilities and few of them have received training in their care. Research, commissioned by Mencap, found that of 215 GPs three-quarters had received no training to help them treat people with a learning disability and 90 percent felt that a patient s learning disability had made it more difficult for them to give a diagnosis. Another factor is diagnostic overshadowing the tendency to interpret symptoms, and the reporting of symptoms, as a mental health or learning disability problem. This can lead health, social care and other professionals, to miss important signs and result in undiagnosed or misdiagnosed conditions. There can be physical barriers to service access by someone with a learning disability. These include organising and using transport, unsuitable signage and building access, lack of support and information about appointments or during treatments, and long waits. People with learning disabilities are more likely to have sensory impairments and these are frequently unrecognised and are under-reported by carers. (7) A large-scale study in the Netherlands demonstrated that 41 percent of people had prescribed spectacles at the time of the study, but of these ten percent were inadequate. Nineteen percent of those without spectacles were assessed as requiring them. Impaired vision and hearing impacts on communication, that is often already more difficult in people with learning disabilities. It has been estimated that 26 percent of people with learning disabilities are admitted to hospital annually, compared to 14 percent of the general population. (10) Mencap s Treat Me Right report highlighted some national issues about the treatment of people with learning disabilities and the care they receive in NHS hospitals. Issues included: staff not understanding people with learning disabilities, lack of staff training, inequalities of care and potential discrimination. (8) Following this report the government has established an independent inquiry, which is ongoing. Locally, we have no information on the number of people with learning disabilities admitted to hospital, nor any information from users and carers about the service they received from local Trusts. 97

8 People with learning disabilities often report poor dental health and oral hygiene. In 1998 a programme of studies was undertaken across Lambeth Southwark and Lewisham to determine the oral health and treatment needs of adults with a learning disability. The programme included: l Interviewing managers of nursing and residential homes about their experiences of obtaining oral healthcare for learning disabled adult residents. l A clinical survey of adults living in a private household, compared with those in residential accommodation. l Examining the experiences, attitudes and perceptions of carers of adults with learning disabilities living in the community. The managers of nursing and residential homes thought that sufficient services were available in the area. Managers felt that the chief barrier to care was residents reluctance to accept treatment and that the treatment of severely disabled patients required special skills and experience. It was found that people with learning disabilities living at home had better oral health than the general population but had fewer teeth. Most of their treatment needs were for simple restorative or denture care. Those living in residential accommodation had fewer caries experience but more of these were untreated. On average adults in residential homes were older than those living in the community, consequently they had greater need for dentures. The experiences, attitudes and perceptions of carers showed that the majority of people interviewed expressed satisfaction with the availability of dental services for learning disabled adults. The main providers of care were general dental practitioners (40%) and the Department of Community Special Care Dentistry at Kings College Hospital (36%). While the availability of dental services was perceived as adequate for the majority of learning disabled adults living in private households in Lambeth, Southwark and Lewisham, dental services for more dependent subjects were less likely to be seen as adequate. Roughly half the people interviewed made suggestions for the improvement of services, including: l dedicated dental services such as the Community Dentistry Service clinics should be maintained l mobile clinics should be extended to day centres as well as special schools l there should be regular dental inspections at day centres and clubs for learning disabled people l there is a need for more publicity about the availability of such services and assistance with finding a dentist. The report made the following recommendations: l maintain and extend special needs dental services l publicise the location of services widely amongst these groups l review protocols for learning disabled patients attending the hospital dental services. Needs related to having learning disabilities Valuing People states that all people with learning disabilities registered with a GP should have a personal Health Action Plan and be encouraged to have regular health checks. In Southwark, the number of people registered with learning disabilities is much smaller than the estimated prevalence and the number of people with learning disabilities seen by social services. These figures suggest that either many people are unregistered with a GP, or that GP registers are incomplete because they were only implemented in the 2006 GP contract. A national survey of people with learning disabilities found that only one in six people with learning difficulties of working age (17%) had a paid job. (12) The survey also found that 65 percent of people with learning disabilities who were unemployed (and said they were able to work) would like a job. In Southwark we fund specialist employment services, and two specific learning disabilities employment advisors, to help people with learning disabilities 98

9 into employment. In the year 2006/07 Southwark helped ten people with learning disabilities into paid work and15 people with learning disabilities into voluntary work. (11) Valuing People stated that people with learning disabilities should have more choice and control over where they lived and wanted to encourage more independent living. Most people with learning disabilities live with their families or in residential care. (2) In Southwark in 2006/07 there were 299 people with learning disabilities living in residential care on a permanent basis. The transition from adolescence to adulthood is a time when young persons with learning disabilities, and their families, are faced with many important decisions. Services need to ensure that there is a smooth transition pathway for people with learning disabilities at this time. Locally there has been some analysis of the needs of young people in transition. This has found that there are increasing numbers of people with complex needs in the system. Complex health and social care needs The epidemiology suggests that the number of adults with learning difficulties who have complex health and social care needs will increase. During day service capacity for people with complex needs was increased. The Southwark Community Learning Disabilities Team is developing a new case worker role to co-ordinate all aspects of care and support for people with complex needs. Patient and user concerns People with learning disabilities co-chair the Learning Disabilities Partnership Board, and there is service user representation on the Council s Safeguarding Adults Partnership Board. Service users have been heavily involved in a review of the working of the partnership board and this has resulted in material presented at the meetings being made more accessible. Self-advocacy groups have been supported and funded to enable service users to participate in service development. As a result users have been actively involved in better integration of health and social services, and the launch of Safeguarding Adults Policy. Recently Southwark College have been funded, to involve service users and carers in developing integrated further education opportunities to people with learning disabilities in the borough. Adults with learning disabilities summary l there are approximately 707 to 809 adults with moderate/severe learning disabilities and 5,287 adults with mild learning disabilities in Southwark l the number of people with severe learning disabilities is likely to increase by one percent per annum as a result of improved health care and increased life expectancy l the health conditions affecting people with learning disabilities (PWLD) are different to the general population: more PWLD die from respiratory disease and congenital heart disease (rather than ischaemic heart disease) l four times as many PWLD die of preventable causes than the general population. Obesity is more common than in the general population and PWLD are more likely to live sedentary lifestyles. Recommendations for the JSNA process l to develop a better understanding of the prevalence of PWLD in Southwark, which includes those with a severe learning disability as well as with mild/moderate disabilities. l ensure primary care fully populates the registers of PWLD l to understand from services the level; of need and care packages provided for PWLD 99

10 l consult with professionals working with PWLD on opportunities for service developments. Service priorities l explore developing targeted prevention strategies for PWLD l encourage the uptake of direct payments l promote GP registers of PWLD and the development of individual Health Action Plans l support PWLD in finding suitable employment l support PWLD to live independently and reduce the number of people living in residential care l support and guide people through the transition from childhood to adulthood, especially those with complex needs l to further improve communication between health and social care staff. 100