WILLIAMS Fionnuala, SCOTT Gordon, McKECHANIE Andrew
Journal article citation:
Journal of Intellectual and Developmental Disability, 39(2), 2014, pp.147-156.
Publisher:
Taylor and Francis
Background: The sexual health needs of younger adults with intellectual disability (ID) are not currently being met by mainstream sexual health services. Little research has been conducted into improving these services’ accessibility.
Method: Thirty-four people with ID aged 16–35, who attended ID services in Lothian, Scotland, completed a questionnaire at a face-to-face interview about whom they could go to for advice and information about sex and relationships, which information sources they used, their experiences of sexual health services, and their preferences regarding these services.
Results: Most participants wanted to attend mainstream services and felt staff from these services should be able to meet their special needs. Preferences on services varied between individuals.
Conclusions: It is important that there continues to be a variety of sexual health services available and that staff are appropriately trained in working with people with ID. Further research is needed to identify and resolve unmet needs in this are
(Publisher abstract)
Background: The sexual health needs of younger adults with intellectual disability (ID) are not currently being met by mainstream sexual health services. Little research has been conducted into improving these services’ accessibility.
Method: Thirty-four people with ID aged 16–35, who attended ID services in Lothian, Scotland, completed a questionnaire at a face-to-face interview about whom they could go to for advice and information about sex and relationships, which information sources they used, their experiences of sexual health services, and their preferences regarding these services.
Results: Most participants wanted to attend mainstream services and felt staff from these services should be able to meet their special needs. Preferences on services varied between individuals.
Conclusions: It is important that there continues to be a variety of sexual health services available and that staff are appropriately trained in working with people with ID. Further research is needed to identify and resolve unmet needs in this are
(Publisher abstract)
Subject terms:
young people, young adults, family planning, learning disabilities, sex education;
SALAUN Laureline, REYNES Eric, BERTHOUZE-ARANDA Sophie E.
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(2), 2014, pp.112-124.
Publisher:
Wiley
Background: In adolescent with intellectual disability, the management of obesity is a crucial issue, yet also quite complex because of their particular perception of themselves. This study investigated the relationship between self-perception variables and morphological variables and their changes after a 9-month Adapted Physical Activity (APA) programme.
Materials and Methods: Twenty-three adolescents with intellectual disability responded to an adapted questionnaire, including the PSI-VSF-ID and a nine-drawing body silhouette scale. Anthropometric and body composition indicators were measured before and after the APA programme.
Results: The main predictor of the adolescents' self-perceptions was the inclination towards positive illusory bias before the intervention; obesity awareness ranked second. Morphological measurements did not contribute in the same way to self-perceptions in the initial and final data.
Conclusions: This study confirms the interest of weight management programmes for adolescents with intellectual disability and points to the need to take positive illusory bias more fully into account in the study of self-perception.
(Publisher abstract)
Background: In adolescent with intellectual disability, the management of obesity is a crucial issue, yet also quite complex because of their particular perception of themselves. This study investigated the relationship between self-perception variables and morphological variables and their changes after a 9-month Adapted Physical Activity (APA) programme.
Materials and Methods: Twenty-three adolescents with intellectual disability responded to an adapted questionnaire, including the PSI-VSF-ID and a nine-drawing body silhouette scale. Anthropometric and body composition indicators were measured before and after the APA programme.
Results: The main predictor of the adolescents' self-perceptions was the inclination towards positive illusory bias before the intervention; obesity awareness ranked second. Morphological measurements did not contribute in the same way to self-perceptions in the initial and final data.
Conclusions: This study confirms the interest of weight management programmes for adolescents with intellectual disability and points to the need to take positive illusory bias more fully into account in the study of self-perception.
(Publisher abstract)
Subject terms:
learning disabilities, obesity, young people, physical exercise, self-concept;
Serious care review of an 18-year-old young man, Connor Sparrowhawk was found submerged in the bath at the short-term assessment and treatment unit, part of Southern Health NHS Foundation Trust on 4 July 2013. Connor had Klinefelter’s syndrome. He experienced learning disabilities, autistic traits and epilepsy and seizures. The review aimed to establish if the risk assessment and risk management of Connor was sufficient in relation to his needs and the risks presented in the management of epilepsy and whether the assessment, planning and implementation of care delivered to CS was of a sufficient standard. The case review concluded that the death of Connor was preventable. Failures identified included: a failure of staff to appropriately risk assess Connors’ epilepsy which led to poor decisions around his care and a failure to safeguard; a lack of effective clinical leadership; and use of a team-based approach which resulted in no individual being held responsible for the care and management of Connor. Recommendations cover: epilepsy management; patient care; leadership; and community and inpatient joint working.
(Original abstract)
Serious care review of an 18-year-old young man, Connor Sparrowhawk was found submerged in the bath at the short-term assessment and treatment unit, part of Southern Health NHS Foundation Trust on 4 July 2013. Connor had Klinefelter’s syndrome. He experienced learning disabilities, autistic traits and epilepsy and seizures. The review aimed to establish if the risk assessment and risk management of Connor was sufficient in relation to his needs and the risks presented in the management of epilepsy and whether the assessment, planning and implementation of care delivered to CS was of a sufficient standard. The case review concluded that the death of Connor was preventable. Failures identified included: a failure of staff to appropriately risk assess Connors’ epilepsy which led to poor decisions around his care and a failure to safeguard; a lack of effective clinical leadership; and use of a team-based approach which resulted in no individual being held responsible for the care and management of Connor. Recommendations cover: epilepsy management; patient care; leadership; and community and inpatient joint working.
(Original abstract)
Subject terms:
learning disabilities, epilepsy, death, young people, risk assessment, risk management, serious case reviews;
Journal of Intellectual Disabilities and Offending Behaviour, 5(3), 2014, pp.124-137.
Publisher:
Emerald
Purpose: There needs to be an increased recognition of foetal alcohol spectrum disorder (FASD) in services that deal with young people with disruptive and offending behaviour, not just those services that deal with adolescents with a recognised intellectual disability. The paper aims to discuss these issues.
Design/methodology/approach: This is a general review of the current available evidence on FASD and how it is likely to predispose affected young people to have contact with secure mental health services and the criminal justice system.
Findings: FASD is likely to have become a more common cause of intellectual disability and behavioural disturbance but the history of significant alcohol exposure in utero if often missed. There is evidence that the hyperactivity is less responsive to psychotropic medication and may represent a different condition to conventional ADHD. However the majority of those affected are in the low normal IQ range.
Research limitations/implications: There is so far very limited research in what is likely to be a relatively common disorder with significant costs to criminal justice, mental healthcare and social services. Epidemiological information from the UK is lacking and urgently needed.
Practical implications: Professionals who work with mentally disordered young people need to be more aware of FASD and its potential contribution to the problems and disabilities in their population.
Social implications: Social workers, foster carers and adoptive parents need to be more aware of FASD and how it can contribute to the breakdown of social care.
Originality/value: There is currently no other review of FASD and the implications for criminal justice, secure mental health and social care for young people.
(Edited publisher abstract)
Purpose: There needs to be an increased recognition of foetal alcohol spectrum disorder (FASD) in services that deal with young people with disruptive and offending behaviour, not just those services that deal with adolescents with a recognised intellectual disability. The paper aims to discuss these issues.
Design/methodology/approach: This is a general review of the current available evidence on FASD and how it is likely to predispose affected young people to have contact with secure mental health services and the criminal justice system.
Findings: FASD is likely to have become a more common cause of intellectual disability and behavioural disturbance but the history of significant alcohol exposure in utero if often missed. There is evidence that the hyperactivity is less responsive to psychotropic medication and may represent a different condition to conventional ADHD. However the majority of those affected are in the low normal IQ range.
Research limitations/implications: There is so far very limited research in what is likely to be a relatively common disorder with significant costs to criminal justice, mental healthcare and social services. Epidemiological information from the UK is lacking and urgently needed.
Practical implications: Professionals who work with mentally disordered young people need to be more aware of FASD and its potential contribution to the problems and disabilities in their population.
Social implications: Social workers, foster carers and adoptive parents need to be more aware of FASD and how it can contribute to the breakdown of social care.
Originality/value: There is currently no other review of FASD and the implications for criminal justice, secure mental health and social care for young people.
(Edited publisher abstract)
Subject terms:
foetal alcohol syndrome, young people, conduct disorders, offenders, mental health services, learning disabilities, criminal justice;
Journal of Applied Research in Intellectual Disabilities, 27(6), 2014, p.521–530.
Publisher:
Wiley
Background: This study examines parent report of conversations about difference and disability in families of adolescents with intellectual disability.
Materials and Methods: Participants included 50 parents (44 mothers, four fathers, and two other caregivers) and their adolescents with intellectual disability (M age = 15.9). Parents provided written responses to open-ended questions regarding conversations with their adolescent. Adolescents completed measures of self-concept and self-determination.
Results: The majority (66%) of parents reported talking to their adolescent about difference and/or disability. Consistent with previous research, some of these conversations were in response to social exclusion (e.g. child was bullied). Parents who knew the aetiology of their child's disability were significantly more likely to talk with their child about his or her disabling condition.
Conclusions: Parents' narratives illustrate their struggle to explain disability to their adolescent. Professionals are challenged to consider how to promote proactive conversations between parents and adolescents.
(Edited publisher abstract)
Background: This study examines parent report of conversations about difference and disability in families of adolescents with intellectual disability.
Materials and Methods: Participants included 50 parents (44 mothers, four fathers, and two other caregivers) and their adolescents with intellectual disability (M age = 15.9). Parents provided written responses to open-ended questions regarding conversations with their adolescent. Adolescents completed measures of self-concept and self-determination.
Results: The majority (66%) of parents reported talking to their adolescent about difference and/or disability. Consistent with previous research, some of these conversations were in response to social exclusion (e.g. child was bullied). Parents who knew the aetiology of their child's disability were significantly more likely to talk with their child about his or her disabling condition.
Conclusions: Parents' narratives illustrate their struggle to explain disability to their adolescent. Professionals are challenged to consider how to promote proactive conversations between parents and adolescents.
(Edited publisher abstract)
Subject terms:
learning disabilities, young people, adolescence, parent-child relations, communication, parents;
Journal of Intellectual Disabilities and Offending Behaviour, 5(2), 2014, pp.64-77.
Publisher:
Emerald
This paper critically explores the impact of anti-social behaviour orders (ASBOs) on young people with mild learning disabilities. In an attempt to identify why young people (under the age of 18) with learning disabilities are exposed to the criminal justice system, an emerging body of evidence is considered. The research provides an insight into some of the difficulties vulnerable young people may encounter, such as receiving unrealistic prohibitions and the lack of support provided after receiving a court order. The research also highlights the lack of professional awareness and understanding of learning disabilities and considers the level of training available to professionals. The paper closes with a discussion of the themes identified from the literature reviewed and some of the changes proposed by the coalition government regarding the future of the criminal justice system.
(Edited publisher abstract)
This paper critically explores the impact of anti-social behaviour orders (ASBOs) on young people with mild learning disabilities. In an attempt to identify why young people (under the age of 18) with learning disabilities are exposed to the criminal justice system, an emerging body of evidence is considered. The research provides an insight into some of the difficulties vulnerable young people may encounter, such as receiving unrealistic prohibitions and the lack of support provided after receiving a court order. The research also highlights the lack of professional awareness and understanding of learning disabilities and considers the level of training available to professionals. The paper closes with a discussion of the themes identified from the literature reviewed and some of the changes proposed by the coalition government regarding the future of the criminal justice system.
(Edited publisher abstract)
Extended abstract:
Purpose: The purpose of this paper is to critically explore the impact of anti-social behaviour orders (ASBOs) on young people with mild learning disabilities. In an attempt to identify why young people (under the age of 18) with learning disabilities are exposed to the criminal justice system, an emerging body of evidence is considered. The research provides an insight into some of the difficulties vulnerable young people may encounter, such as receiving unrealistic prohibitions and the lack of support provided after receiving a court order. The research also highlights the lack of professional awareness and understanding of learning disabilities and considers the level of training available to professionals. The paper closes with a discussion of the themes identified from the literature reviewed and some of the changes proposed by the coalition government regarding the future of the criminal justice system.
Design/methodology/approach: Although a strict systematic review of the literature was not required for the literature review, a less rigorous systematic approach was employed. When searching for literature, the general principles and guidelines of the Cochrane Collaboration were employed, this included inclusion and exclusion criteria. The eligibility criteria guided the focus of the literature review and determined the relevance of the research. During the literature review it was recognised that much of the research is discussion/review based, and currently there is a limited amount of empirical research available. An eco-systems perspective was employed to consider the connections between young people, the environment and anti-social behaviour (ASB).
Findings: The findings from the literature review, illustrate a growing body of evidence which suggests that young people with learning disabilities have been “caught up” in ASB measures. It is positive that more recently, there has been a much needed focus on early identification and diversion away from the criminal justice system, for those with mental health conditions and learning disabilities. The research findings presented by Cant and Standen, and Talbot, provide possible explanations as to why vulnerable young people are made subject to ASBOs. Indeed this lack of sufficient training has not gone unnoticed by other researchers.
Research limitations/implications: Although the author is aware of the valuable insight qualitative research can provide, the methodological limitations raise questions regarding the validity of the research the author has considered, especially as most of the research the author has drawn upon is based on exploratory approaches. Nevertheless, the concurring themes drawn from the research findings raise much curiosity around the potential links between disability awareness training and the identification of young people with mild learning disabilities.
Practical implications: Despite the governments recent proposal to abolish the ASBO and introduce a new approach to tackling ASB, it appears unclear as to how the new measures will differ from the existing ones. The recent proposed measures are set out in the Anti-social Behaviour, Crime and Policing Act 2014. Although the accompanying guidance for frontline professionals clearly sets out the need for early intervention, which sits alongside a new menu of ASB powers, including the Criminal Behaviour Order (which seems very similar to the ASBO), it is disappointing that the guidance does not give any direction of how new measures will impact on young people with learning disabilities.
Social implications: Although the ASBO was not initially designed to target children and young people, it is clear from the literature that certain families and young people are often singled out and labelled as “anti-social”. It is unsurprising, that children and young people from poor families, with low educational attainment, limited employment opportunities and live in the most marginalised and deprived communities are amongst those who are singled out as being particularly problematic.
Originality/value: The research findings have helped me to understand some of the potential difficulties vulnerable young people may encounter if they come into contact with the criminal justice system. As there appears to be a lack of empirical research available which considers the connections between learning disabilities and ASBOs, further research within this area of practice would be beneficial. The research invites an alternative perspective which adds to the existing literature.
Subject terms:
criminal justice, crime, anti-social behaviour, learning disabilities, young people, social work;
Adolescents becoming formally involved with a juvenile court because of school-related behaviour and discipline problems is a phenomenon known as the school-to-prison pipeline. Adolescents with learning disabilities are disproportionately represented within this pipeline. A study was conducted to review the outcomes for a population of youthful offenders (n = 433) in two juvenile courts in the Midwest, and it was found that youthful offenders with learning disabilities, when compared with nondisabled youthful offenders, were more likely to be suspended from school, were adjudicated delinquent at younger ages, and were more frequently held in detention centres. These outcomes are all risk factors for ongoing delinquent behaviours and, for some, eventual adult criminal court involvement. It is recommended that the juvenile courts continue to shift toward a rehabilitative paradigm in working with this more vulnerable offender population, including increased use of social workers.
(Edited publisher abstract)
Adolescents becoming formally involved with a juvenile court because of school-related behaviour and discipline problems is a phenomenon known as the school-to-prison pipeline. Adolescents with learning disabilities are disproportionately represented within this pipeline. A study was conducted to review the outcomes for a population of youthful offenders (n = 433) in two juvenile courts in the Midwest, and it was found that youthful offenders with learning disabilities, when compared with nondisabled youthful offenders, were more likely to be suspended from school, were adjudicated delinquent at younger ages, and were more frequently held in detention centres. These outcomes are all risk factors for ongoing delinquent behaviours and, for some, eventual adult criminal court involvement. It is recommended that the juvenile courts continue to shift toward a rehabilitative paradigm in working with this more vulnerable offender population, including increased use of social workers.
(Edited publisher abstract)
Subject terms:
learning disabilities, young offenders, case studies, young people, schools, special education, school children;
Child: Care, Health and Development, 40(2), 2014, pp.149-157.
Publisher:
Wiley
Background: Communication is frequently impaired in young people (YP) with bilateral cerebral palsy (CP). Important factors include motoric speech problems (dysarthria) and intellectual disability. Augmentative and Alternative Communication (AAC) techniques are often employed. The aim was to describe the speech problems in bilateral CP, factors associated with speech problems, current AAC provision and use, and to explore the views of both the parent/carer and young person about communication.
Methods: A total population of children with bilateral CP (n = 346) from four consecutive years of births (1989–1992 inclusive) with onset of CP before 15 months were reassessed at age 16–18 years. Motor skills and speech were directly assessed and both parent/carer and the young person asked about communication and satisfaction with it.
Results: Sixty had died, eight had other conditions, 243 consented and speech was assessed in 224 of whom 141 (63%) had impaired speech. Fifty-two (23% of total YP) were mainly intelligible to unfamiliar people, 22 (10%) were mostly unintelligible to unfamiliar people, 67 (30%) were mostly or wholly unintelligible even to familiar adults. However, 89% of parent/carers said that they could communicate 1:1 with their young person. Of the 128 YP who could independently complete the questions, 107 (83.6%) were happy with their communication, nine (7%) neither happy nor unhappy and 12 (9.4%) unhappy. A total of 72 of 224 (32%) were provided with one or more types of AAC but in a significant number (75% of 52 recorded) AAC was not used at home, only in school. Factors associated with speech impairment were severity of physical impairment, as measured by Gross Motor Function Scale level and manipulation in the best hand, intellectual disability and current epilepsy.
Conclusions: In a population representative group of YP, aged 16–18 years, with bilateral CP, 63% had impaired speech of varying severity, most had been provided with AAC but few used it at home for communication.
(Publisher abstract)
Background: Communication is frequently impaired in young people (YP) with bilateral cerebral palsy (CP). Important factors include motoric speech problems (dysarthria) and intellectual disability. Augmentative and Alternative Communication (AAC) techniques are often employed. The aim was to describe the speech problems in bilateral CP, factors associated with speech problems, current AAC provision and use, and to explore the views of both the parent/carer and young person about communication.
Methods: A total population of children with bilateral CP (n = 346) from four consecutive years of births (1989–1992 inclusive) with onset of CP before 15 months were reassessed at age 16–18 years. Motor skills and speech were directly assessed and both parent/carer and the young person asked about communication and satisfaction with it.
Results: Sixty had died, eight had other conditions, 243 consented and speech was assessed in 224 of whom 141 (63%) had impaired speech. Fifty-two (23% of total YP) were mainly intelligible to unfamiliar people, 22 (10%) were mostly unintelligible to unfamiliar people, 67 (30%) were mostly or wholly unintelligible even to familiar adults. However, 89% of parent/carers said that they could communicate 1:1 with their young person. Of the 128 YP who could independently complete the questions, 107 (83.6%) were happy with their communication, nine (7%) neither happy nor unhappy and 12 (9.4%) unhappy. A total of 72 of 224 (32%) were provided with one or more types of AAC but in a significant number (75% of 52 recorded) AAC was not used at home, only in school. Factors associated with speech impairment were severity of physical impairment, as measured by Gross Motor Function Scale level and manipulation in the best hand, intellectual disability and current epilepsy.
Conclusions: In a population representative group of YP, aged 16–18 years, with bilateral CP, 63% had impaired speech of varying severity, most had been provided with AAC but few used it at home for communication.
(Publisher abstract)
Purpose: The purpose of this paper is to demonstrate that the common and statutory law governing children's capacity or competence to consent to and to refuse medical treatment is unsatisfactory and to suggest solutions.
Design/methodology/approach: Critical legal analysis of the law on assessing minors’ decision-making capacity in relation to legal recognition of their consent to and refusal of medical treatment.
Findings: Without legal mechanisms which protect both children and their rights, all children and young people are effectively disabled from exercising age and capacity-related autonomy and participation in decisions affecting their lives. Yet in English law, inconsistencies between legal and clinical measures of decision-making capacity, situations where compulsory medical or mental health treatment is lawful, and tensions between rights and duties associated with human rights, autonomy, best interests and protections for the vulnerable create difficulties for clinicians, lawyers and patients.
Research limitations/implications: As the paper acknowledges in its recommendations, the views of stakeholders are needed to enrich and inform legal reforms in this area.
Originality/value: The paper makes suggestions to amend the law and clinical practice which are original and far reaching. The paper suggests that in order to observe children's rights while protecting them appropriately, the Mental Capacity Act 2005 and Deprivations of Liberty Safeguards should be applied to minors. The paper recommends the establishment of Mental Capacity Tribunals, similar in nature and purpose to Mental Health Tribunals, to provide legal safeguards and mechanisms to foster the supported decision-making envisaged in recent United Nations Conventions.
(Publisher abstract)
Purpose: The purpose of this paper is to demonstrate that the common and statutory law governing children's capacity or competence to consent to and to refuse medical treatment is unsatisfactory and to suggest solutions.
Design/methodology/approach: Critical legal analysis of the law on assessing minors’ decision-making capacity in relation to legal recognition of their consent to and refusal of medical treatment.
Findings: Without legal mechanisms which protect both children and their rights, all children and young people are effectively disabled from exercising age and capacity-related autonomy and participation in decisions affecting their lives. Yet in English law, inconsistencies between legal and clinical measures of decision-making capacity, situations where compulsory medical or mental health treatment is lawful, and tensions between rights and duties associated with human rights, autonomy, best interests and protections for the vulnerable create difficulties for clinicians, lawyers and patients.
Research limitations/implications: As the paper acknowledges in its recommendations, the views of stakeholders are needed to enrich and inform legal reforms in this area.
Originality/value: The paper makes suggestions to amend the law and clinical practice which are original and far reaching. The paper suggests that in order to observe children's rights while protecting them appropriately, the Mental Capacity Act 2005 and Deprivations of Liberty Safeguards should be applied to minors. The paper recommends the establishment of Mental Capacity Tribunals, similar in nature and purpose to Mental Health Tribunals, to provide legal safeguards and mechanisms to foster the supported decision-making envisaged in recent United Nations Conventions.
(Publisher abstract)
Subject terms:
children, decision making, Deprivation of Liberty Safeguards, learning disabilities, medical treatment, young people, mental capacity;
Journal of Policy and Practice in Intellectual Disabilities, 10(4), 2014, pp.289-299.
Publisher:
Wiley
The Nordhorn Public Transportation Intervention Study project in Germany had the aim of increasing the independent use of public transportation by students with intellectual disabilities (ID) through interventions in the social and physical environment. Success of the project was measured by the number of students who were able to independently go from home to school at the end compared with the start of the project and by the skills students evidenced with coping with barriers on their way to school at the end of the project compared with their baseline skills. This multicenter study included various types of interventions: assessment of mobility/traffic competency, mobility integrated individual educational plans, mobility and traffic curriculum, information for teachers and parents, training for bus drivers, real-life traffic training, support by mobility trainers and trip coaches, adaptations to streets and buses, and incident management including the use of communication devices (e.g., mobile phones with Global Positioning System). At the start of the project, less than 1% of the 124 students with ID used public transport to get to school, 3 years later, the proportion increased to 65.3%. On 19 of 29 items, students showed relevant and statistically significant improvement of skills in public transport use and traffic wayfinding behavior compared with the situation at baseline.
(Edited publisher abstract)
The Nordhorn Public Transportation Intervention Study project in Germany had the aim of increasing the independent use of public transportation by students with intellectual disabilities (ID) through interventions in the social and physical environment. Success of the project was measured by the number of students who were able to independently go from home to school at the end compared with the start of the project and by the skills students evidenced with coping with barriers on their way to school at the end of the project compared with their baseline skills. This multicenter study included various types of interventions: assessment of mobility/traffic competency, mobility integrated individual educational plans, mobility and traffic curriculum, information for teachers and parents, training for bus drivers, real-life traffic training, support by mobility trainers and trip coaches, adaptations to streets and buses, and incident management including the use of communication devices (e.g., mobile phones with Global Positioning System). At the start of the project, less than 1% of the 124 students with ID used public transport to get to school, 3 years later, the proportion increased to 65.3%. On 19 of 29 items, students showed relevant and statistically significant improvement of skills in public transport use and traffic wayfinding behavior compared with the situation at baseline.
(Edited publisher abstract)
Subject terms:
learning disabilities, social inclusion, transport, children, young people, young adults, training;