BIOMED‐MEROPE* project: service provision for adults with intellectual disability: a European comparison

The aim of the present paper is to describe and compare services for adults with intellectual disability (ID) and mental health needs in five European countries: Austria, England, Greece, Ireland and Spain. A framework and structure for collecting information about service provision was designed. This information was collected through a mixture of interviews with service providers, questionnaires and a review of the research literature within each country. Information was collected on historical context, policy, legislation, assessment, treatment and the structure of services for people with ID and mental health problems. Overall, the needs of those with additional mental health needs have not been specifically addressed at a national level with perhaps the exception of England and Ireland, although there are still gaps in services in these nations. Normalization has been adopted in each of the five countries, and there are moves toward deinstitutionalization, integration and inclusion. Families and self‐advocacy groups have grown. The pace of this change varies between and even within countries. The main findings of the study include: unclear policy, trends for legislative changes, increased prevalence of mental health problems, inadequate generic service provision, a need for specialist mental health services, a need for improved interconnections of services, and a need for training developments. Policy and legislation in the five European countries under consideration tend to separate the disability aspects of people with ID from their mental health needs. Consequently, the service needs of this group remain largely invisible. This might be a direct reflection of policy clarity and legislation, or could be the result of a failure to implement existing guidelines. This has a detrimental effect on the lives of people with ID, and their families and carers.     

Profiles of Patients With Intellectual Disability and Mental Illness in Specialized and Generic Units in an Ontario Psychiatric Hospital

In a mental health system where limited specialized services exist for individuals with intellectual disability (ID), patients using such services should be those with the most complex needs. The purpose of this study was to compare the profile of patients with ID served in a specialized unit (n = 40) to those in generic units (n = 141) within one psychiatric teaching hospital in Ontario. Based on previous research, it was hypothesized that specialized patients would differ in terms of psychiatric diagnoses, service needs, overall level of functioning, and length of stay when compared with their counterparts in generic units. A retrospective review of select data from the Resident Assessment Instrument–Mental Health (RAI-MH) and Global Assessment of Functioning (GAF) was conducted for patients with ID discharged from all units of our hospital from 2006 to mid-2009. Though patients were demographically similar, those in the specialized unit stayed in the hospital longer than generic patients. Differences in psychiatric diagnoses, reasons for referral, overall functioning, and medication use were also found.     

Annotation: New research into general psychiatric services for adults with intellectual disability and mental illness

Background   There are a variety of models for the mental health care of adults with comorbid intellectual disability (ID) and mental illness. There has been a long-running debate as to whether this should be provided by general psychiatric or specialised ID services. A previous review concluded that there was no clear evidence to support either model with research being often of a poor quality, lacking replication, and outcome measures were often inappropriate or varied between studies. This review aims assess differences in outcome for patients with ID and mental disorders treated in general or specialised ID mental health services.
Method   A literature review was conducted using electronic databases and websites of ID and mental health organisations to locate all references where people with ID receive mental health care in general psychiatric services from 2003. No meta-analysis was attempted because of the divergent nature of the studies.
Results   People with ID (especially severe ID) have reduced access to general psychiatric services. General psychiatric inpatient care is unpopular especially with carers but can be improved by providing specially trained staff and in-reach from community ID teams. Opportunities may exist to enhance the care of people with borderline intellectual functioning within general psychiatric services.
Conclusions   Although no new randomised controlled trials have been published, the weight of research is accumulating to suggest that provision of general psychiatric services without extra help is not sufficient to meet the needs of people with ID.     

General psychiatric services for adults with intellectual disability and mental illness

BACKGROUND: Adults with intellectual disability (ID) and mental illness may use general or specialist psychiatric services. This review aims to assess if there is evidence for a difference in outcome between them. METHODS: A literature review was conducted using a variety of electronic databases and hand-search strategies to identify all studies evaluating the outcome of people with ID and mental illness using general psychiatric services. RESULTS: There is no conclusive evidence to favour the use of general or specialist psychiatric services. People with ID stay less time on general psychiatric than specialist inpatient units. People with severe ID appear not to be well served in general services. Older studies of inpatient samples suggest a worse outcome for people with ID. Novel specialist services generally improve upon pre-existing general services. Assertive outreach in general services may preferentially benefit those with ID. Recent studies suggest similar lengths of stay in general psychiatric beds for people with and without ID. CONCLUSIONS: Although 27 studies were located, only two were randomized controlled trials. The evidence is poor quality therefore further evaluation of services employing a variety of designs need to be employed to give more robust evidence as to which services are preferred.     

Trends in mental health services for people with intellectual disability in residential care in Israel 1998-2004

Persons with intellectual disability (ID) have more mental health problems than the general population and utilize psychiatric service to a greater extent. This study was conducted to look at trends over time in the number of psychiatrists recruited, psychiatric medication and hospitalization for persons with ID in residential care in Israel. Data was extracted for the 1998-2004 period from the annual surveys conducted of medical service in all residential care centers in Israel by the Office of the Medical Director. Results showed an increase in psychiatrists working with this population, from 1.08 psychiatrist per 1,000 study population in 1998 to 2.23 in 2004, psychotropic medication also increased from 45% to 52% over the same period, but psychiatric inpatient hospitalization decreased from 5.48 to 4.99 per 1,000 study population. It is concluded that there has been an improvement in psychiatric service to this residential care population over the study period, but there is a need for a formal subspecialty in psychiatry, training and research.     

Mental health services and young people with intellectual disability: is it time to do better?

Background There is evidence that the mental health needs of children with disabilities are inadequate. The aim of the present study was to determine the extent of specialist health service use during adolescence by a group of individuals with intellectual disability (ID) and mental health problems. Method The study population consisted of 80 young people with ID, who were examined in childhood and adolescence for psychiatric and behaviour disorder. These young people were interviewed again in early adult life for the presence of psychiatric and behaviour disorder. Evaluation questionnaires were used during the follow‐up study to assess service use from adolescence. Results The key finding was that the great majority (64%) of subjects with persistent challenging behaviour from childhood into adult life and those with an established childhood psychiatric disorder received no specialist mental health care. Conclusions The development of mental health services for this vulnerable group with complex psychiatric and behaviour disorders has been poor for a number of reasons, including lack of recognition at the primary care level and insufficient numbers of trained professionals within specialist services.     

The prevalence of people with intellectual disability admitted to general hospital psychiatric units: level of handicap, psychiatric diagnoses and care utilization

Previous studies have stated that people with intellectual disability (ID) are more often afflicted by psychiatric disorders than the general population. In spite of the high prevalence of psychiatric disorders among people with ID, it is not known how many actually receive psychiatric in-patient care and treatment by the mental health services. In the present study, the number of people with mild and severe ID admitted to in-patient psychiatric care were compared with corresponding figures in the general population in Sweden. The results show a low frequency of psychiatric care utilization among people with ID and coexisting psychiatric disorders in comparison to the proportion of psychiatric care utilization among people with psychiatric disorders in the general population. The results are discussed in terms of how the level of ID might influence referral or diagnoses, the length of admissions, and the support provided within the special services to people with ID and psychiatric disorders.     

Psychiatric co-morbidity and gender differences in intellectual disability

Background Although gender differences in psychopathology among the general psychiatric population appear to be well documented, such differences have been either ignored or inconsistently investigated among people with intellectual disability (ID). Methods The study examined psychiatric co‐ morbidity in 295 men and 295 women with ID and significant social impairments living in community settings. The sample was drawn from consecutive clinical referrals to a specialist mental heath service of South‐East London. Psychiatric diagnoses were based on ICD‐10 criteria. Results Personality disorder was more common among men, although dementia and adjustment reaction were more common among women. There were also gender differences in marital status, with a larger percentage of women being either married or in a stable relationship. Gender differences in the source of referral were also observed, with more women being referred through primary care and more men being referred through generic mental health services. Conclusions Female patients seem to have at some extent different mental health needs from male patients. Such differences should be taken into account in the design and delivery of clinical service for people with ID.     

Service Use and Perceived Service Effectiveness for People with Intellectual Disability and Dual Diagnosis in Israel

Introduction: Studies regarding the use of support services for persons with a dual diagnosis of intellectual disability and psychopathology are scarce; even fewer have focused on children and young adults. The aim of the present study, conducted in Israel, was to compare the use of support services and their perceived effectiveness by families of children and young adults with intellectual disability (ID) and with dual diagnosis. Methods: Data were collected from 195 family (parental) caregivers of individuals with ID or dual diagnosis, aged 10–30. Using a structured questionnaire, family caregivers reported on the use of support services and on their perceived effectiveness. Results: Findings showed that in addition to the obvious mental health services, caregivers of individuals with ID and dual diagnosis report using a range of services and resources. Caregivers of persons diagnosed only with ID perceived some of the mental health services as being more effective than did caregivers of individuals with dual diagnosis. Conclusion: We advocate for enhanced training for professionals working with individuals with dual diagnosis within all services. Furthermore, parents need to be supported in their search for services for their child and in dealing with complex situations. In addition, more research is needed to identify why individuals with dual diagnosis may not benefit from current mental health services and, in line with this, develop more effective services. Finally, we advocate for the establishment of a one-stop shop that can provide for the comprehensive needs of these individuals within one center.     

Mental disorders in primary care in Israel: prevalence and risk factors

Objective

Psychiatric morbidity is common among patients in primary care services and leads to disability and increased use of medical services. Comparison of primary care and community prevalence data is of interest in relation to the health services planning for mental disorders. The aim of the present study was to measure prevalence of mental disorders in six primary care clinics in Israel and to assess risk factors for these disorders.

Method

Prevalence of mental disorders was measured in a sample of 2,948 primary care consecutive attendees, using two-stage stratified sampling with the General Health Questionnaire 12 (GHQ-12) and the Composite International Diagnostic Interview (CIDI).

Results

A high rate (46.3 %) of current mental disorders was found, with rates of current depressive episode, generalized anxiety disorder, somatization disorder, and neurasthenia being relatively high in comparison with rates in other countries. Low education was a risk factor for all categories of disorders, unemployment a risk factor for depressive disorders, and parenthood was protective for most categories of disorders.

Conclusions

High rates of mental disorders were found in this Israeli primary care sample as compared to other countries, while in the community the rates were midrange as compared to other countries, pointing to a relatively higher use of primary care services by patients with mental disorders in Israel than in other countries.     

Queensland psychiatrists' attitudes and perceptions of adults with intellectual disability

Background Quality mental health care for adults with an intellectual disability (ID) depends upon the availability of appropriately trained and experienced psychiatrists. There have been few surveys of psychiatrists working with this population. Method This Australian study obtained psychiatrists’ attitudes to and perceptions of the mental health needs of adults with an ID. Training needs were also sought. The survey instrument used was a purposely designed, 28‐item self‐administered questionnaire featuring multiple‐choice and open‐ended questions. Results The majority of psychiatrists expressed concerns about treatment of this group, describing unmet needs. A total of 75% considered that antipsychotics were overused to control aggression, and 34% of psychiatrists were reluctant to treat adults with an ID. In total, 85% agreed that mental health in ID should be offered as a training option for psychiatric registrars, and that specialized mental health services would provide a high standard of care for this population. Conclusion Broad concerns are raised regarding pathways to mental health care for adults with an ID in Australia. An Australia‐wide training strategy needs to be developed. Partnerships between mental health, disability and community services that serve the mental health needs of this population, should actively seek to engage psychiatrists.     

Psychiatrists' knowledge,training and attitudes regarding the care of individuals with intellectual disability

Background Psychiatrists are responsible for providing proper care for people with intellectual disability who have psychiatric disorders. This study examined psychiatrists' perceptions of their own training, knowledge and therapeutic skills, as well as their attitudes towards this population. Methods Questionnaires were distributed to 679 psychiatrists working within the public sector in Israel. Results Completed questionnaires were returned from 256 psychiatrists (38% response rate). Most (90%) participants reported having had limited training in the diagnosis and treatment of people with intellectual disabilities, while between 34% and 72% reported having inadequate knowledge in specific areas. Conclusion The findings of limited training and self‐perceived inadequate knowledge are at least partially explained by the service model, wherein people with intellectual disabilities are cared for by general mental health services. The identified inadequacies could be overcome through the implementation of a model in which specially trained psychiatrists are deployed within generic services.     

An alternative model for psychiatric service delivery for people with intellectual disabilities in a vocational rehabilitation center

The prevalence of mental illness in the intellectually disabled (ID) population is high. Because of their special characteristics, such as involvement of multiple carers (family, social services, protected housing staff, vocational instructors), linguistic limitations and the need for a familiar and steady environment, these patients require special therapeutic consideration. In Israel, as in many other countries, people with ID (PWID) receive psychiatric services from general psychiatric outpatient clinics and hospitals; their treatment is generally not specifically tailored to their needs, and hence often suboptimal. In this article we will review some models of psychiatric service delivery for PWID and present an alternative model that we have developed. Our service has been operating since December 1998; it is based upon cooperation between the municipal social services and the local psychiatric outpatient clinic, and is provided in a vocational rehabilitation center where most mild to moderate ID individuals in our area, the city of Bat Yam, are employed. During the first five years (1999-2004) of the operation of the service, 42 people (about half the total number of clients passing through the vocational rehabilitation center during this period) were examined by the psychiatrist; 37 of them (88%) had at least one psychiatric diagnosis. There were especially high rates of adjustment disorder (26% of all principal diagnoses) and of behavior disorder (24% of all principal diagnoses). This model for psychiatric service delivery for PWID in a vocational-rehabilitation center, based as it is on cooperation between the different care agencies, facilitates more accurate psychiatric diagnosis and hence the provision of more appropriate treatment, which in practice usually consists of a combination of pharmacological and behavioral treatment together with educational programs and support for families and staff. Based on our positive experience with this model, we believe that it is the most suitable framework of treatment for adults with dual diagnosis, and that it should be adopted in other areas.     

Associations Between Mental Health Problems and Challenging Behavior in Adults With Intellectual Disabilities: A Test of the Behavioral Equivalents Hypothesis

Introduction: Current research findings in the field of intellectual disabilities (ID) regarding the relationship between mental health problems and challenging behavior are inconclusive and/or contradictory. The aim of this study was to further investigate the putative association between these two highly prevalent phenomena in people with ID, and specifically to explore the hypothesis that challenging behaviors may be behavioral equivalents of mental health problems. Methods: A sample of 160 adults accessing secondary care ID health services was assessed using five validated measures. These included ratings of severity of disability, mental health problems, autism behaviors, physical health problems, and four different aspects of challenging behavior. In conjunction with demographic information, four multiple regression analyses were undertaken to examine the interaction between mental health problems (moderated by severity of disability) and ratings of overall challenging behavior, aggression, self-injurious behavior, and stereotypy. In each case, age, gender, autism, and physical health problems were included as covariates. Results: There was a statistically significant association between mental health problems and ratings of overall challenging behavior, as well as the moderating effect of severity of disability. Importantly, the positive association between mental health problems and challenging behavior was only significant at more severe levels of disability. Conclusions: These findings support the “behavioral equivalents” hypothesis for mental health problems and challenging behaviors. However, further longitudinal research is required before this hypothesis can be considered unequivocally supported.     

Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems

Background During the last decade, there has been a growing interest in outpatient support services for persons with intellectual disability (ID) and psychiatric and/or behavioural problems and their families. In this study, we explore the family burden that is associated with children or adults with ID and behavioural or psychiatric problems living at home. Method The research group consisted of 66 clients of In Casa, a project of outpatient treatment. Their average age is 18.97 years and their average IQ 55.37. The Reiss Screen for Maladaptive Behaviour (adults) or Reiss Scales for Children's Dual Diagnosis (children) and the Nijmegen Family Situation Questionnaire have been administered. Results About 62% of the children and 86% of the adults living at home and referred to In Casa have severe psychiatric or behavioural problems as measured by the Reiss scales. The dual diagnosis has a more negative impact on the family situation than the condition of ID only. Conclusion Parents consider the psychiatric or behavioural problems of their child to be an extra burden and feel it more difficult to raise and manage such a child. This impels them to change the situation and to call on the help of external services. Some methodological questions and the implications of the findings in terms of support needs are discussed.     

Onset of maternal psychiatric disorders after the birth of a child with intellectual disability: A retrospective cohort study

Mothers of a child with intellectual disability (ID) have more psychiatric disorders after the birth of their child than other mothers. However, it is unclear if this is because they have more psychiatric disorders before the birth or if the increase is related to the burden of caring for the child. We aimed to calculate the rate of new psychiatric disorders in mothers after the birth of their eldest child with ID born between 1983 and 2005 and to compare these with rates in women with a child with no ID or autism spectrum disorder (ASD) born during the same period. By linking data from Western Australian population-based registries, we selected women with no psychiatric history who survived the birth of their live-born child (N = 277,559) and compared rates of psychiatric disorders for women with a child with ID and women without a child with or ASD. Negative binomial regression with STATA 12 was used for all analyses. Mothers of children with mild–moderate ID of unknown cause had around two to three and a half times the rate of psychiatric disorders of mothers of children without ID or ASD. Mothers of children with Down syndrome and no pre-existing psychiatric disorder showed resilience and had no impairments in their mental health. Interventions and services are needed for mothers of other children with ID to improve their mental health. Further research is implicated to explore the mental health of mothers of children with ID and a pre-existing psychiatric disorder.     

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 inpatient care for adults with intellectual disabilities: generic or specialist units?

BACKGROUND: When adults with intellectual disabilities (ID) require a psychiatric admission, general adult mental health units are often used. Specialist units have emerged recently as a care option but there is only limited evidence of their effectiveness. Thus this study aims to describe and evaluate the effectiveness of a specialist inpatient unit and report on the utilization of generic and specialist inpatient services. METHOD: All patients admitted to a specialist ID psychiatric unit were evaluated on admission and immediately after discharge on a number of outcome measures. In addition, they were compared with those admitted to general adult mental health units covering the same catchment area. RESULTS: Significant improvements were demonstrated within the specialist unit cohort on measures including psychopathology, global level of functioning, behavioural impairment and severity of mental illness. The specialist unit patients had a longer length of inpatient stay but were less likely to be discharged to out-of-area residential placement. CONCLUSIONS: Specialist units are an effective care option for this group of people.     

A follow-up study of mortality, health conditions and associated disabilities of people with intellectual disabilities in a Swedish county

Background In the planning of services and health care for individuals with intellectual disability (ID), information is needed on the special requirements for habilitation and medical service and associated disabilities. Material and methods An unselected consecutive series of 82 adult persons with ID was studied. The medical examination consisted of the individual's health condition, associated impairments and disabilities. Medical and habilitation services and support were studied. Results The results indicated that 71% of the persons in the series had severe and 29% mild ID. Forty-seven per cent of the persons with severe ID and 35% of those with mild ID had one or more additional central nervous system (CNS) disabilities. Of the persons with ID, 99% had access to a family doctor and 84% attended regular health visits. Notably, half of persons were referred to a specialist examination as a consequence of their present medical examination. Half of the persons with mental health problems were previously undiagnosed and only a few of these had access to a psychiatrist. Conclusion Our study clearly demonstrates the magnitude and importance of neurological and psychiatric impairments in ID. The findings suggest a strong need for multidisciplinary health service.     

Preferred terms for users of mental health services among service providers and recipients

OBJECTIVE: The terms used to refer to recipients of psychiatric services continue to be controversial. Terms in current use include "patient," "client," "consumer," and "survivor." In this study mental health service recipients and providers were surveyed about their preferences among these terms, and responses were analyzed to identify factors associated with various preferences. METHODS: A total of 550 service providers and 427 recipients at four sites in Ontario-two provincial psychiatric hospitals, a private mental health center, and a psychiatric unit of a general hospital-participated in a brief anonymous survey. RESULTS: Among service providers, 68.4 percent preferred the term "patient," 26.5 percent preferred "client," and.5 percent preferred "consumer." Logistic regression analysis showed that service providers' preferences were associated with age and gender. Among service recipients, 54.8 percent preferred the term "patient," 28.8 percent preferred "client," 7 percent preferred "survivor," and 2.8 percent preferred "consumer." Service recipients' preferences were associated with site, self-reported diagnosis, and employment status. CONCLUSION: The study results indicate lack of universality in preferences for terms for users of mental health services and suggest the need for dialogue about preferred terms between service providers and recipients.