Policy, service pathways and mortality: a 10-year longitudinal study of people with profound intellectual and multiple disabilities

Background One hundred and forty‐two children and adults with profound intellectual and multiple disabilities were identified in 1993 in a single Scottish region on whom detailed information was collected via a postal questionnaire survey. Methods They were followed up in 2003. The time spanned represented a period of significant policy change in which community care and inclusive policies were implemented. Results Of the original population of 142, 30 (21.1%) had died in the intervening period and two had left the area, allowing follow‐up information to be collected on 110 individuals. While in line with policy, all those living in hospital and hostels in 1993 had been relocated by 2003 to community settings, a substantial proportion had moved into other forms of congregate care, notably nursing homes. Overall, the proportion in congregate care increased from 38% in 1993 to 43% in 2003. The second principal providers were family carers, with the proportion of those living at home also increasing from 33% to 40%. Provision in group houses increased from 6.3% to 15.5%. Day service provision remained based on a traditional centre‐based model. The principal cause of death was respiratory disease. Survivors in 2003 were in 1993 more competent in personal self‐help and motor abilities and were less likely to have epilepsy. Conclusions The findings are considered with respect to the extent to which they realize policy aspirations.     

Cause-specific mortality of people with intellectual disability in a population-based, 35-year follow-up study

The aim of the present study was to investigate cause‐specific mortality in people with intellectual disability (ID). It was based on a 35‐year follow‐up study of a nation‐wide population of 2369 subjects aged between 2 and 97 years. The 1095 deceased people had accumulated 64 539 person‐years. The research took the form of a prospective cohort study with mortality follow‐up. Observed and expected deaths were calculated as standardized mortality ratios using the Finnish general population as the reference. Cause‐specific mortality ratios were calculated by the level of ID, sex and age. The three most common causes of death were cardiovascular diseases, respiratory diseases and neoplasms. Disease mortality was high up to 40 years of age, but did not increase thereafter. The difference between sexes in cause‐specific mortality was smaller than in the general population. Cause‐specific mortality differed significantly from the general population, with reduced mortality from neoplasms and external causes, but ageing individuals with mild ID had similar mortality patterns to the general population. The disparities in the cause‐specific mortality between younger people with ID and the general population fade with advancing age, producing similar health risks. In preventative work, special attention should focus on common diseases and accidents in the community.     

Children born to women with intellectual disabilities - 5-year incidence in a Swedish county

Background Families with parental intellectual disabilities (ID) are likely to need support in achieving a decent family life. In order to accurately plan for such support services, society needs data regarding the occurrence of those parents and their children. The aim of this study was to investigate the 5‐year incidence of children born to women with ID in a county in Sweden. Methods Women born between 1975 and 1989 were identified from school registers for children and adolescents with ID in the county of Blekinge. The women's personal identification numbers were, in 2010, linked and matched with the Swedish Medical Birth Register. Results In total, 98 women with ID were identified. Nine of these had given birth to children; one woman to two children and eight women to one child each. The 10 children were born between 2004 and 2008. Conclusion The incidence rate calculated as a result of the present study indicates that approximately 2.12 per 1000 children are born per year to women with ID. For the whole of Sweden that rate indicates an incidence of approximately 225 children each year. On the basis of this, the prevalence of children (aged 0–18 years) being born to women with ID is estimated at about 4050.     

Living conditions of adults with intellectual disabilities from a gender perspective

Background The role of gender has been a neglected issue in research on intellectual disability (ID). People with ID are generally treated as a homogenous group that are largely categorized by their level of ID. This study compared living conditions of women and men with ID and related the results to similarities and differences among the general population in corresponding age groups. Methods Persons with ID born in Uppsala County between 1959 and 1974 constituted the study sample. Information on the living conditions of 110 persons with ID was collected using questionnaires completed by relatives and staff. Information on living conditions of the general population was obtained through national welfare statistics conducted by Statistics Sweden (SCB). Results In both samples corresponding diversities were revealed for type of employment/daily activities, where women worked in traditional female job sectors and men were occupied with traditional male jobs. Women and men with ID participated to about the same extent in recreational and cultural activities and on only four of the 19 activities listed in the questionnaire (visits to the cinema and library, reading books and practising hobbies alone) significant differences were observed. Among women and men in the general population, we found gender‐related differences in 13 of the activities listed. However, with the exception of women more frequently visiting the library and reading books, the two samples demonstrated no corresponding gender‐related differences. For the remaining six domains (finances, family and social relations, housing, transport, community participation and personal safety), no differences were noted between women and men with ID. This finding contrasted sharply with the differences found between women and men in the general population. Conclusions Surprisingly, the comparison yielded few differences in living conditions between women and men with ID compared with those found in women and men of the general population. This finding suggests that people with ID were treated as gender‐neutral persons rather than as women and men with individual preferences and needs. Thus, it appears that having ID is a more important determinant than gender regarding living conditions for women and men with ID.     

A study of complicated grief symptoms in people with intellectual disabilities

Introduction Previous studies have shown a significant association between familial bereavement and the onset of challenging behaviours and psychopathology in people with intellectual disabilities (ID). However, little work has been done to accurately describe the specific symptoms of grief, in particular symptoms of complicated grief in this population. Consensus criteria for the diagnosis of complicated grief have been drawn up and tested for validity in the general population. Aims To examine the occurrence of symptoms of complicated grief, and to explore the relationships between complicated grief and bereavement experience. Method A bereavement history questionnaire and a newly developed measure examining for symptoms of complicated grief were administered to a group of carers of people with mild or moderate ID, who had experienced a parental bereavement within the previous 2 years. The questionnaires were also administered to a matched comparison group, who had not been bereaved. Results/Conclusions This carer‐based comparison study has revealed that bereaved individuals with ID experience complicated grief symptoms following the death of a parent, with one‐third of the bereaved group experiencing 10 or more clinically apparent symptoms. In addition, complicated grief symptoms were more likely to occur with higher rates of bereavement ritual involvement. These findings have both clinical and research implications.     

Motor activation in people with profound intellectual and multiple disabilities in daily practice

Background People with profound intellectual and multiple disabilities (PIMD) are at risk of being motorically inactive. This study investigated the degree and type of motor activation in daily practice and its relationship to personal and contextual factors.

Method A total of 58 participants with PIMD participated in the study. Data concerning the motor activation were collected by means of a diary over a period of 14 days. Relationships to personal and contextual factors were analysed using multilevel analyses.

Results The mean number of transfers was 3.1 times per day (range: 0–9, SD?=?1.4), the mean number of relocations was 7.7 times per day (range: 2–13, SD?=?2.5), and the mean number of motor activities offered was 1.5 per day (range: 0–10, SD?=?1.9). Relationships to age, gender, location, and day of week were found.

Conclusion Motor activation seems to be a minor part of the support provided to people with PIMD.     

Person-centred planning: factors associated with successful outcomes for people with intellectual disabilities

Background Recent research in the USA and UK indicates that person‐centred planning (PCP) can lead to improvements in lifestyle‐related outcomes for people with intellectual disabilities (ID). It is clear, however, that the introduction of PCP does not have an equal impact for all participants. The aim of the present paper was to identify factors associated with the probability of delivering a plan and with improvements in outcomes for those who did receive a plan. Methods Information on the life experiences of participants was collected over a period of approximately 2 years for a cohort of 93 adults with ID. Results There were powerful inequalities in both access to and the efficacy of PCP in relation to participant characteristics, contextual factors and elements of the PCP process. Conclusions Results are discussed in relation to implications for policy and practice for increasing the effectiveness of PCP and reducing inequalities in the life experiences of people with ID.     

Comparative study of laterality in people with fragile X syndrome,people with intellectual disabilities,and people with typical development

Following on from the studies by McManus and Cornish [(1997). Fractionating handedness in mental retardation: What is the role of the cerebellum? Laterality, 2(2), 81–89] and Cornish, Pigram, and Shaw [(1997). Do anomalies of handedness exist in children with fragile-X syndrome? Laterality, 2(2), 91–101], the aim of this paper was to determine laterality in people with fragile X syndrome (FXS). The sample comprised three study groups: the first with 30 people with FXS (mean age 17.9 years), the second 34 people with various intellectual disabilities (ID, mean age 20.9 years), and the third 160 people with typical development (mean age 14.7 years). Laterality was assessed with a test adapted for this study. The results confirm the preponderance of right-handedness (93.3%) in people with FXS and present new data regarding footedness and sensory dominance (eyedness and earedness), indicating inconsistent footedness and ocular cross-dominance. Almost three-quarters (73.5%) of people with other ID were right-handed. The results corroborate those of McManus and Cornish (1997). People with FXS tend to be right-handed but have ocular cross-dominance.     

Occurrence of mental health problems in Swedish samples of adults with intellectual disabilities

Abstract. Objective: The aim of this study was to investigate the occurrence of mental health problems in adults with intellectual disabilities (ID) and the number of adults with ID receiving care at general mental health clinics. Method: The Reiss Screen for Maladaptive Behaviour and the Psychopathology Inventory for Mentally Retarded Adults were used to investigate mental health problems in samples from two Swedish counties. Adults with ID receiving psychiatric care at general mental health clinics were investigated via the mental health services register in one county. Results: The overall occurrence of mental health problems in adults with ID ranged from 34 % to 64%. The most common mental health problems were aggressive, self-injurious behaviours, signs of depression, anxiety or adjustment problems. The occurrence of adults with ID among patients receiving out- or in-patient psychiatric care was approximately 1%. Between 70 % and 90% of these persons had a mild level of ID. Conclusion: The overall occurrence of mental health problems was similar to reported overall figures in comparable studies conducted in the US, UK and Denmark. The number of adults with ID registered for out- or in-patient psychiatric care was low compared with the occurrence of mental health problems based on the screening results.     

Psychiatric symptoms and problem behaviours in people with intellectual disabilities

Background Previous studies have suggested different patterns of associations between psychiatric symptoms and problem behaviours in people with intellectual disabilities (ID). The aim of this study was to investigate which problem behaviours are associated with specific psychiatric symptoms and the relative strength of these specific associations. Method A cross sectional survey using the Psychiatric Assessment Schedule for Adults with Developmental Disabilities Checklist and the Disability Assessment Schedule was carried out in a sample of 214 adults with ID. Results Self‐injurious and, to a lesser extent, aggressive problem behaviours were most associated with affective type symptoms. Screaming and destructive behaviours tended to be more associated with autism‐related social impairment rather than conventional psychiatric symptoms. Conclusions This study gives further evidence of associations between psychiatric symptoms and specific problem behaviours in people with ID. It may be particularly useful to consider the diagnosis of affective disorders if a person with ID shows self‐injurious or aggressive behaviours.     

Changes in social impairment for people with intellectual disabilities: a follow-up of the Camberwell cohort

The skills and social impairments of a total population of children with severe intellectual disabilities and/or autism from Camberwell, South London (Wing and Gould, 1978 and 1979), were assessed using the Handicaps, Behaviours and Skills schedule, and they were reassessed when they were adolescents and young adults (Shah, 1986). Changes in social impairment over time are presented here. As Shah (1986) had found with a smaller sample, social impairment remained relatively stable over time: on a simple socially impaired versus sociable dichotomous grouping, 93% did not change social group. Within the socially impaired group, there was a significant increase in impairment over time (i.e., people who were passive at Time 1, were aloof at Time 2). Implications of these results and predictions for a further follow-up study are discussed.     

Organizational and individual factors associated with breakdown of residential placements for people with intellectual disabilities

Background People with intellectual disabilities (IDs) whose behaviour challenges services are at increased risk of placement breakdown. Most previous research has tended to focus on the role of individual characteristics in predicting breakdown. A small number of studies have suggested that service variables may impact on intervention effectiveness and hence placement breakdown. Method This study used a non‐experimental group comparison design to investigate potential differences between two groups of residential homes, one of which had experienced placement breakdown, and one of which had successfully maintained placements in the community. Results More residents in the breakdown group had inappropriate sexual behaviours but there were no other differences. Services in the breakdown group had more limited procedural guidance for staff, weaker training, supervision and team meetings and less external professional support. Conclusion Placement characteristics may be an important determinant of community placement success for people with IDs and challenging behaviour. Those selecting and funding residential placements for such people should attend to the technical competence of the placement (in terms of its use of procedural guidance, training and professional advice) and to the extent of support for staff (in terms of training, supervision and team meetings).     

The impact of health checks for people with intellectual disabilities: a systematic review of evidence

Background Health checks for people with intellectual disabilities (ID) have been recommended as one component of health policy responses to the poorer health of people with ID. This review summarises evidence on the impact of health checks on the health and well‐being of people with ID. Methods Electronic literature searches and email contacts were used to identify literature relevant to the impact of health checks for people with ID. Results A total of 38 publications were identified. These involved checking the health of over 5000 people with ID from a range of countries including a full range of people with ID. Health checks consistently led to detection of unmet health needs and targeted actions to address health needs. Conclusions Health checks are effective in identifying previously unrecognised health needs, including life‐threatening conditions. Future research should consider strategies for optimising the cost‐effectiveness or efficiency of health checks.     

Improving the health of people with intellectual disabilities: outcomes of a health screening programme after 1 year

Background People with intellectual disabilities (IDs) have a higher level of health needs, a higher level of which is unmet, compared with the general population. Health screening can detect unmet health needs, but it is unknown whether it effects beneficial health outcomes in the longer term. People with IDs are reliant on health management by proxy and there are many potential access barriers that may prevent health needs identified at screening from subsequently being met. This study aims to determine whether health gains can be detected 1 year after a health screening programme specific to the needs of adults with IDs. Methods A total of 50 participants offered the health screen intervention were individually matched for gender, age and level of IDs with 50 control participants who received standard treatment only. Outcome measures after 1 year were semi‐structured review of medical case notes, and semi‐structured assessment with the people with IDs and their carer. Results During the 1‐year period, the incidence of health need detection was more than twice as great for intervention, compared with control participants (mean number of new needs was 4.80 compared with 2.26; P < 0.001), and the level of met new health needs was greater (mean of 3.56 compared with 2.26; P = 0.001). The level of met health promotion needs was also greater (P < 0.001), and more health monitoring needs were met for intervention compared with control participants (P = 0.039). Conclusions This is the first study to demonstrate sustained benefits in health outcomes from a clinical intervention for adults with IDs compared with standard treatment alone. Its routine implementation is feasible, and would reduce health inequalities.