A tool for assessing sexual knowledge of people with Intellectual disabilities in Norway.

Background: Previous research has shown that people with intellectual disabilities have limited sexual knowledge, which can be essential for developing positive sexuality. This study aimed to check the validity and reliability of an assessment tool (SexKunn) for measuring the sexual knowledge of people with intellectual disabilities in Norway. Further, we aimed to identify potential knowledge gaps among the participants and highlight their potential impact. Methods: 37 people with intellectual disabilities completed one assessment. 20 participants then completed a retest. Clinicians' (n=23) views on the assessment tool were measured to obtain face validity. Positive and negative agreement analysis was used to identify potential dimensions in the data. Results: A weighted Cohen's kappa for the test and retest of the overall scores was considered to be substantial. The clinicians described an acceptable face validity regarding high positive value scores and low negative burden scores. They also suggested improvements. The study identified that the participants lacked knowledge about female genitals, hygiene, appropriate touching/sexual acts with friends/intimate partners, and contraception. Conclusions: The SexKunn is a feasible assessment tool to measure sexual knowledge in people with intellectual disabilities. A lack of sexual knowledge of people with intellectual disabilities may violate their sexual rights.

Mental health, challenging behaviour, diagnosis, and access to employment for people with intellectual disabilities in Norway.

BACKGROUND: Studies have found that presence of challenging behaviours and mental health problems limits employment for people with intellectual disabilities. This study investigates the associations between age, gender, living condition, level of intellectual disability, diagnoses, behaviour, mental health, and employment in adults with intellectual disabilities in Norway. METHOD: A cross-sectional community-based survey including 214 adult participants (56% men) with intellectual disabilities. RESULTS: In our sample, 25% had no organised day activity, 27% attended non-work day care, 19% attended sheltered employment, or day care with production, without pay and 29% worked in paid sheltered employment. One participant attended mainstream employment. Moderate and severe/profound level of intellectual disability, possible organic condition and irritability significantly reduced the odds of employment (paid and unpaid). CONCLUSION: Findings suggest unequal access to the sheltered employment that was meant to be inclusive. More individualised evaluation of prerequisites is suggested to further facilitate employment for this group.

Health checks for adults with intellectual disabilities. / Helsekontroll for voksne med utviklingshemming.

New national guidelines recommend annual health checks for adults with intellectual disabilities. Adults with a diagnosis of intellectual disability die earlier, have poorer health and more difficulty accessing health services than the general population. Annual health checks have been recommended in Norway and internationally for many years because they help identify ill health and serious illnesses.

Association of intellectual disability with violent and sexual crime and victimization: a population-based cohort study.

BACKGROUND: Intellectual disability (ID) is associated with violent and sexual offending and victimization, but the importance of neuropsychiatric comorbidity and severity of disability remains unclear. METHODS: In a register-based cohort study of people born in Sweden 1980-1991 (n = 1 232 564), we investigated associations of mild and moderate/severe ID with any, violent and sexual crimes, and with assault victimization, stratified by comorbid autism and attention deficit hyperactivity disorder (ADHD). We defined ID by attendance at a special school or registered diagnosis and obtained data on criminal convictions and injuries or deaths due to assaults from nationwide registers until end of 2013. RESULTS: Compared to people without ID, autism or ADHD, men and women with mild or moderate/severe ID and comorbid ADHD had elevated risks of violent crimes [range of hazard ratios (HRs) 4.4-10.4] and assault victimization (HRs 2.0-7.7). Women with mild ID without comorbidities or with comorbid autism also had elevated risks of violent crimes and victimization (HRs 1.8-4.6) compared to women without ID, autism or ADHD. The relative risks of sexual offending and victimization were elevated in men and women with ID without comorbidities (HRs 2.6-12.7). The highest risks for sexual offending in men (HRs 9.4-11.0) and for sexual assault victimization in women (HRs 11.0-17.1) related to ID and comorbid ADHD. CONCLUSIONS: The elevated risk of violent offending and assault victimization in people with ID is largely explained by comorbid ADHD, whereas ID is independently associated with sexual crimes and victimization, even though absolute risks are low.

People with intellectual disabilities and harmful sexual behaviour: Professionals' views on the barriers to prevent harm.

BACKGROUND: People with intellectual disabilities can be exposed to sexual abuse and they can display harmful sexual behaviour. This study aimed to identify barriers to preventing harmful sexual behaviour in people with intellectual disabilities within the support sector and the justice system. METHOD: We conducted focus group interviews with 20 participants from hospital-based habilitation centres, community residences, schools and the criminal justice system. RESULTS: The interviews identified a lack of education and guidelines for stakeholders or carers on regulating the sexual behaviour of people with intellectual disabilities. The criminal justice system faces challenges related to prioritising, understanding and communicating. People with intellectual disabilities may lack an understanding of the concepts of sexual consent and acceptable sexual behaviour. CONCLUSION: There is a need to improve knowledge about intellectual disability and how to prevent harmful sexual behaviour for professional caregivers in the support sector and the criminal justice system.

Personal and sexual boundaries: the experiences of people with intellectual disabilities.

BACKGROUND: Previous research shows that people with intellectual disabilities have less knowledge about sexual health and are more vulnerable to victimisation. In cases of sexual abuse, they are likely to encounter the criminal justice system as vulnerable witnesses. Several challenges arise when people with intellectual disabilities are in communication with the criminal justice system. We aimed to explore the perceptions, experiences and knowledge of people with intellectual disabilities regarding personal and sexual boundaries in order to identify factors relevant for preventing sexual abuse, to develop future studies. METHOD: The study had a qualitative design. Data were collected from seven people with mild intellectual disabilities (25-40 years; 2 men, five women) through one-to-one interviews in specialised health care services for people with intellectual disabilities (SHCS). The participants lived alone, in group homes and with their families. Many received professional support services. Data were analysed using thematic analysis. RESULTS: The interviews identified that the participants want to be in romantic relationships and that some, consider sex to be unimportant. Many of them have had trouble finding someone to have a romantic relationship with. The participants were unsure about sexual consent related to sexual activity, though many could explain the concept of consent in other contexts. Many participants reported that they had experienced sexual abuse, including online sexual abuse. Those participants who had reported the sexual abuse had positive experiences obtaining assistance from the criminal justice system. The participants who had experienced sexual abuse reported trauma and fear related to their experiences. CONCLUSION: This study highlights the need for information about sexually abusive relationships, risks online and ways to get help. More attention should be given to the impact of trauma, police and mental health treatment following sexual abuse against people with intellectual disabilities.

Defendants with intellectual disability and autism spectrum conditions: the perspective of clinicians working across three jurisdictions.

The treatment of vulnerable defendants by criminal justice systems or correctional systems varies within and between countries. The purpose of this paper is to examine three legal jurisdictions - New South Wales in Australia; Norway; England and Wales - to understand the extent of variation in practice within the court systems for defendants with intellectual disabilities (ID) and/or autism spectrum conditions (ASC). Two of the jurisdictions had a process for screening in place, either in police custody or at court, but this was not universally implemented across each jurisdiction. All three jurisdictions had a process for supporting vulnerable defendants through the legal system. Across the three jurisdictions, there was variation in disposal options from a mandatory care setting to hospital treatment to a custodial sentence for serious offences. This variation requires further international exploration to ensure the rights of defendants with ID or ASC are understood and safeguarded.

Factors associated with non-completion of and scores on physical capability tests in health surveys: The North Health in Intellectual Disability Study.

BACKGROUND: This study investigated the completion rates, scores and factors associated with non-completion and low scores on physical capability tests in a health survey administered to adults with intellectual disabilities. METHOD: Assessment comprised body mass index (BMI), the Short Physical Performance Battery (SPPB), the timed up-and-go (TUG) test, the one-legged stance (OLS) test; and gross motor, communication and behavioural functioning tests. RESULTS: The completion rates among 93 participants (aged 17-78) were 46% for the SPPB, 42% for the TUG, and 31% for the OLS. More severe intellectual disability (OR = 3.12, p < .001) and lower BMI (OR = 0.859, p = .001) were related to test non-completion. The SPPB scores were below the reference values from the general population. Lower scores were associated with older age, motor disabilities and intellectual disability severity. CONCLUSIONS: Including physical capability tests in health surveys among adults with intellectual disabilities is important to monitor functional status and guide prevention strategies.

Improving the transition process to independent living for adolescents with profound intellectual disabilities. Experiences of parents and employees.

BACKGROUND: The transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden. METHODS: A descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality's guidelines, families with a child with PID should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family's needs. The main question in the interviews was 'What was your experience with cooperation in the transition process, and what would you do to improve this process?' The interviews were analysed with a thematic approach using systematic text condensation. RESULTS: The parents experienced a lack of general information about the 'housing waiting list', level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families' wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents' burden of care. Employees experienced that PID adolescents developed skills, mastery and degrees of independence after completing a residency at the Folk High School. CONCLUSIONS: To improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care on families: 1) Systematic follow-up program for families to observe their needs at an early stage; 2) More available group houses; 3) Information about the housing priorities of the services and; 4) Educational preparation programs for families.

Implementation of the Short-Term Assessment of Risk and Treatability over two phases.

BACKGROUND: Over the last decade, the Short-Term Assessment of Risk and Treatability (START) has provided a strong evidence base to predict a range of problem behaviors. The implementation of START and adaptation of the services to the use of START have so far been sparsely described in the literature. The purpose of this study was to describe the continuation and the interdisciplinarity of risk assessments through the two phases. METHODS: Over a period of 10 years, the forensic mental health services at Brøset has implemented START in two phases: initially with implementing the instrument (2005-2009) and secondarily by customizing the instrument to everyday treatment and planning (since 2009). This implementation was based on data from 887 START assessments for 181 patients over a decade (2005-2015). RESULTS: The results showed that the number of START assessments has been stable throughout the past 10 years and the interval between the ratings has decreased significantly (p<0.05). The involvement by diversity of professionals has increased significantly over the two implementation phases. CONCLUSION: This study also addressed the continuity and organization of the implementation process and presented an overview of how START has been widespread in the service through treatment. The results showed an increased multidisciplinary participation and a continuing rate of assessments as the implementation progressed from assessment to a combined assessment-treatment phase.

Substance use problems among people with mild/borderline intellectual disability: Challenges to mainstream multidisciplinary specialist substance treatment in Norway.

AIMS: This article aims to shed light on the prevalence of problem substance use in individuals with borderline or mild intellectual disability in Norway, the extent to which their problem use warrants multidisciplinary specialist substance treatment (MST) and whether they receive such treatment at present. METHOD: We employed a scoping review of international and Norwegian literature and made additional informal literature searches. RESULTS: The prevalence of substance use problems among people with intellectual disability in Norway is uncertain. In spite of representing problem complexity of the kind that warrants MST and the entitlement of all population groups to such treatment, Norwegians with mild or borderline intellectual disability seem to receive treatment at this level only to a modest extent. CONCLUSION: In order to fit better with aims of Norwegian substance policy, there is a need for national research on the prevalence of substance use among people with intellectual disability. We also seem to need both effect studies and action research in order to strengthen screening and assessment routines and collaboration across competence areas and administrative levels and to develop treatment modalities that fit people in this population group.

A qualitative study of how people with severe mental illness experience living in sheltered housing with a private fully equipped apartment.

BACKGROUND: There are a number of supported housing options for people with severe mental illness (SMI), but limited knowledge about residents' experiences. The aim of this study was to explore how people with SMI experienced sheltered housing consisting of both a private fully equipped apartment and a shared accommodation room for socializing. METHODS: Fourteen people with SMI living in sheltered housing apartments participated in a qualitative study with semi-structured face to face individual or group interviews. RESULTS: Residents' access to the service providers in the sheltered housing, who were seen as both "ordinary people" and skilled to observe symptom changes at an early stage, were major factors for the perception of security. In addition, residents highlighted the possibility of living in a fully equipped apartment, and having access to a shared accommodation room to connect with other residents. Having a fully equipped apartment including their own equipment such as a washing machine was said to help reduce conflicts. Short tenancy agreements made some informants feel insecure. It was also essential to have meaningful daily activities outside the residence to avoid re-hospitalization. CONCLUSIONS: The positive experience was connected to having a fully private equipped apartment including shared accommodation room. The service providers should be aware of the dilemma with in-house support, to make residents feel secure versus increased dependency on service providers.

Violence and sexual offending behavior in people with autism spectrum disorder who have undergone a psychiatric forensic examination.

The increased awareness of Autism Spectrum Disorders (ASD) over the last few decades as well as the potential association between ASD and offending behaviors has spurred a need for increased research in this area. In order to explore any possible relationship between ASD and violent or sexual crime the present study examines all forensic examination reports over a 10-yr. period in Norway where the charged persons were diagnosed with ASD and charged with either a violent (N = 21) or a sexual (N = 12) offense. Differences between these two groups regarding previous contact with child welfare and confessions to the offense were found. There was also a tendency toward more severe mental health problems and less intellectual problems among the violent offenders than the sexual offenders.

Resilience and Professional Quality of Life in Staff Working with People with Intellectual Disabilities and Offending Behavior in Community Based and Institutional Settings.

Staff in forensic services for people with intellectual disabilities (ID) are expected to deal with a wide range of emotional challenges when providing care. The potential impact of this demanding work has not been systematically explored previously. This article explores the professional quality of life (QoL) and the resilience (hardiness) of the staff in this setting. The Professional QoL questionnaire and the Disposional Resilience Scale were completed by staff (n=85, 80% response rate) in the Norwegian forensic service for ID offenders. Responses from staff working in institutional settings were compared to those from staff in local community services. Staff in the local community services had higher resilience scores compared to the staff in the institutional setting, (t=2.19; P<0.05). However in the other QoL and resilience domains there were no differences between the staff in the two settings. The greater sense of resilient control among community staff may be a function of both the number of service users they work with and the institutional demands they face. Even though these participants worked with relatively high risk clients, they did not report significantly impaired quality of life compared to other occupations.

Validation and adaptation of the Norwegian version of Hayes Ability Screening Index for intellectual difficulties in a psychiatric sample.

BACKGROUND: Intellectual disabilities (ID) among psychiatric patients have traditionally been neglected. A lack of convenient instruments and competency in ID may have worsened the conditions and treatment availability for these patients. AIMS: Validation and adaptation of a screening instrument for ID (Hayes Ability Screening Index; HASI) in a psychiatric hospital setting. METHODS: This is a cross-sectional study of 50 psychiatric patients in two Norwegian psychiatric hospitals comparing results of the HASI with the Wechsler Abbreviated Scale of Intelligence (WASI). RESULTS: The HASI correlated well with the standard IQ test used (r= 0.67, P< 0.001). At a stated cut-off score of 85, the HASI had a sensitivity of 100% and specificity of 34%. CONCLUSIONS: The HASI is a valid and time-saving screening instrument for ID among psychiatric patients. The prescribed cut-off score, however, resulted in a large number of false positives.

[Screening for intellectual disability among adults]. / Screening for psykisk utviklingshemning hos voksne.

BACKGROUND: Instigation of proper measures in case of intellectual disability is often conditioned by a diagnosis. Our aim was to assess whether the Hayes Ability Screening Index (HASI) is a suitable screening instrument for intellectual disability among adults. MATERIAL AND METHODS: The article is based on three former studies aimed at validating HASI for use among patients referred for neuropsychological examination, prison inmates and psychiatric inpatients in community mental health centres. RESULTS: The sample consisted of 264 persons. The HASI correlated with the more comprehensive scales of assessing intellectual functioning (Wechsler tests) (r = 0.73, p < 0.001). With a cut-off value of 85, HASI had a sensitivity of 0.97 and a specificity of 0.61 in relation to an IQ < 70. INTERPRETATION: HASI is associated with few false negatives, but a large number of false positives. This implies that an intellectual disability is concluded in too many cases; a positive screening should be followed up with a more thorough assessment.

The usefulness of assessing suggestibility and compliance in prisoners with unidentified intellectual disabilities.

This present study explored the relationship of interrogative suggestibility (n = 133) and compliance (n = 118) to intellectual functioning among prison inmates. The Norwegian versions of the Gudjonsson Suggestibility Scale (GSS) and the Gudjonsson Compliance Scale (GCS) were used. The results supported previous findings of a negative correlation between the Gudjonsson scales and IQ, and the scales were found useful throughout the IQ range. The impact of a memory artifact was discussed in the light of recent studies and criticism of the scales.

Forensic issues in intellectual disability.

PURPOSE OF REVIEW: The present paper reviews some of the most significant findings in the field of forensic issues related to intellectual disability over the last 2 years. RECENT FINDINGS: Recent publications have explored the prevalence and assessment of intellectual disabilities in the criminal justice system, as well as individual characteristics of intellectual disabled offenders. Service by the criminal justice system and treatment of intellectual disabled offenders have also been explored. New insights into violence and sexual offences have been achieved, however identification and evidence-based treatment of intellectual disabled offenders are not widely explored issues. SUMMARY: Progress in treatment studies, studies of the function of the criminal justice system and risk assessments have resulted in improvements in these aspects during recent years. The wide range of services involved in successful initiatives has been addressed, but some crucial aspects still receive too little attention. Differences between countries and cultures have not been emphasized, and the progress that has been achieved seems to be confined to countries with a clear policy and organized services for offenders with intellectual disabilities.

Validation of the Norwegian version of Hayes Ability Screening Index for mental retardation.

The Hayes Ability Screening Index was developed primarily to provide a short, effective screening test to indicate possible mental retardation amongst persons who come in contact with the criminal justice system. This study examined the validity of a Norwegian version in a sample of 73 subjects. 45 were male and 28 were female (M = 33.3 yr, SD = 12.5; range = 17 to 60 years) consecutively selected from patients referred for neuropsychological examination. The Wechsler Adult Intelligence Scale (WAIS-III) was the criterion of validity. The correlation of .81 between scores on the WAIS-III and the Hayes Index was significant. At a stated cut-off score of 85, the sensitivity was 100% and specificity 57%. A suggested alternative cut-off score of 81 obtained a sensitivity of 95% and specificity of 72%. These results indicate that the Hayes Ability Screening Index is a useful, valid, and time-saving tool for screening of mental retardation for the Norwegian population.