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Case report

Adult male patient with severe intellectual disability caused by a homozygous mutation in the hnmt gene, willem m a verhoeven.

1 Centre of Excellence for Neuropsychiatry, Vincent Van Gogh Institute, Venray, The Netherlands

2 Department of Psychiatry, Erasmus Medical Centre, Rotterdam, The Netherlands

Jos I M Egger

3 Donders Institute for Brain, Cognition and Behaviour, Radboud University, Nijmegen, The Netherlands

Paddy K C Janssen

4 Department of Hospital Pharmacy, VieCuri Medical Centre, Venlo, The Netherlands

5 Department of Clinical Pharmacy and Toxicology, Maastricht University Medical Centre, Maastricht, The Netherlands

Arie van Haeringen

6 Department of Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands

Histamine is involved in various physiological functions like sleep–wake cycle and stress regulation. The histamine N-methyltransferase (HNMT) enzyme is the only pathway for termination of histamine neurotransmission in the central nervous system. Experiments with HNMT knockout mice generated aggressive behaviours and dysregulation of sleep–wake cycles. Recently, seven members of two unrelated consanguineous families have been reported in whom two different missense HNMT mutations were identified. All showed severe intellectual disability, delayed speech development and mild regression from the age of 5 years without, however, any dysmorphisms or congenital abnormality. A diagnosis of mental retardation, autosomal recessive 51 was made. Here, we describe a severely mentally retarded adolescent male born from second cousins with a homozygous mutation in HNMT. His phenotypic profile comprised aggression, delayed speech, autism, sleep disturbances and gastro-intestinal problems. At early age, regression occurred. Treatment with hydroxyzine combined with a histamine-restricted diet resulted in significant general improvement.

Brain histamine, formed from the essential amino acid L-histidine, is a neurotransmitter and involved in several physiological functions like sleep–wake cycles, stress response and appetite. Two different enzymes are responsible for its inactivation, that is, diamine oxidase (DAO) and histamine N-methyltransferase (HNMT), located in chromosome 2q22.1 (OMIM: 605238). DAO, also known as histaminase, is mainly expressed in the digestive tract and to a lesser extent in the kidneys and placenta, which indicates that this enzyme metabolises histamine in the peripheral organs but not in the central nervous system (CNS). In contrast, HNMT is widely expressed in the CNS, kidney and liver and catalyses the transfer of a methyl group from S-adenosyl-L-methionine to histamine, yielding N-methylhistamine and S-adenosyl-L-homocysteine ( figure 1 ). Thus, inactivation of histamine by HNMT is the only well-known pathway for the termination of neurotransmission action in the mammalian CNS.

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Enzymatic activity of histamine N-methyltransferase (HNMT). HNMT catalyses the transfer of a methyl group from S-adenosyl-L-methionine to histamine, yielding N-methylhistamine and S-adenosyl-L-homocysteine (figure provided by PKCJ).

As reported by several investigators, genetic single nucleotide polymorphisms of HNMT may play a role in a variety of human brain disorders such as Parkinson’s disease, 1–3 and attention deficit disorder, 4 although that it is still not elucidated whether alterations in HNMT are primarily or secondarily involved. 5 In addition, lowered histamine levels in cerebrospinal fluid have repeatedly been reported in patients with narcolepsy and other disorders with excessive daytime sleepiness. 6 7 Finally, it is not clear whether polymorphisms of HNMT are also associated with gastrointestinal diseases. 8

Animal experiments with HNMT knockout (KO) mice have demonstrated that HNMT deficiency enhances brain histamine concentrations indeed. As a consequence, the histamine KO mice showed high aggressive behaviours and experienced dysregulation of sleep–wake cycles. 9 10

In recent years, a very limited number of patients have been described with a genetically caused deficiency of HNMT. One patient, aged 23 years, with a deletion at 2q22.1q22.3 encompassing among others the HNMT gene showed a clinical picture characterised by severe intellectual disability and several somatic anomalies related to other deleted genes. 11 Apart from this patient, two unrelated consanguineous families of Turkish and Kurdish ancestry, respectively, have been reported. 12 The Turkish family with its background in Iraq had a total of nine children of whom four (two boys and two girls) showed profound to severe intellectual disability and speech was limited to single words. The condition was milder in the males as compared with the females and none of them had any neurological problems nor dysmorphisms, autism or congenital anomalies of any kind. All affected members showed mild regression from the age of 5 years. The Kurdish family with its origin in Iraq had seven children of whom three (two boys and one girl) presented with severe intellectual disability and delayed speech development. Similarly, these patients had no dysmorphisms or any congenital malformations. Exome sequencing identified two different homogeneous missense HNMT mutations. In both families with affected members, ranged in age from 13 years to 35 years, a diagnosis of non-syndromic autosomal intellectual disability was established that was named mental retardation, autosomal recessive 51 (MRT51; OMIM: 616739). These observations indicate that histamine modulates brain development and that HNMT plays an important role in human neurodevelopment.

Here, we describe in detail an adolescent male with severe intellectual disability from a family of second generation consanguinity in whom exome sequencing finally yielded a homogenous mutation in the HNMT gene.

Case presentation

Early development.

The patient is a 23-year-old severely intellectually disabled native Dutch man born from consanguineous parents in that the paternal grandmother of the patients’ father was a sister of the paternal grandmother of the patient’s mother. Father and mother are, therefore, second cousins. The patient was born after his mother had five miscarriages and one healthy son. Pregnancy and delivery were uncomplicated and during his first 2 years, development of speech, motor function and sociality were normal, although that he suffered from recurrent upper airway infections. Thereafter, however, global deterioration with loss of previously acquired capacities, especially language, became apparent and severe aggressive behavioural problems occurred. Moreover, it was no longer possible to make normal contact. Aged 3, at a specialised outpatient department for child and adolescent psychiatry, a diagnosis of autism spectrum disorder was made, at that time also called childhood disintegrative disorder. One year later, the patient was referred to a child neurology clinic for evaluation of his developmental regression. Somatic and neurological examination disclosed no abnormalities nor were there any dysmorphisms. Laboratory tests of relevant haematological and chemical parameters as well as extensive investigations, including MRI scanning of the brain, were all normal and a diagnosis of autistic retardation was made. In subsequent years, genetic, neurological, metabolic, ophthalmological and dermatological examinations were performed as well as a second MRI of the brain under general anaesthesia. Again, no aetiological explanation could be found for his developmental delay and the diagnosis of autistic retardation was confirmed. Because of his aggressive behaviour with temper tantrums, he stayed during daytime at an activity centre of an institute for people with intellectual disabilities where several short-lasting pharmacological interventions were tried that all had to be stopped because of increase of disinhibited and aggressive behaviours (promethazine, methylphenidate and phenobarbital) or motor side effects (risperidone). Apart from challenging behaviours, there were persistent sleep disturbances as well as intermittent urine incontinence and diarrhoea.

First neuropychiatric referral

At the age of 12, he was referred for specialised neuropsychiatric evaluation to the first author. Behavioural observation revealed clear ritualistic, stereotyped and autistic traits with mood instability necessitating structured individual guidance in all situations to avoid overestimation with subsequent challenging and aggressive behaviours. He could not read, write, calculate or tell the time. Somatic and neurological examination showed no abnormalities and there were no dysmorphisms. Weight, height and head circumference were in accordance with his biological age. Relevant haematological and biochemical parameters were all normal. The patient communicated with simple few word sentences, body language and pictorial signs. As assessed with the Vineland Adapative Behaviour Scale (VABS 13 ) developmental age scores on the domains of communication, motor skills, socialisation and daily activities were 19 months, 42 months, 11 months and 24 months, respectively, corresponding with severe intellectual disability. At that time, he was treated by his mother with homeopathic compounds of which one also contained a very low dose of promethazine. For behavioural control, two times per day 0.4 mg haloperidol was added. To elucidate the aetiology of his severe intellectual disability, single nucleotide polymorphism (SNP) array analysis was performed that showed no abnormalities. Subsequently, specialised neuropsychiatric assistance was no longer needed.

Intermediate period

Aged 14, the patient developed severe headache, vomiting, neck flexion, urine incontinence and unstable gait on which haloperidol was discontinued. Since these symptoms worsened, multiple brain imaging was performed that demonstrated a brain tumour in the fossa posterior. He subsequently underwent fossa posterior craniotomy and a benign right-sided cerebellar haemangioblastoma was successfully removed (see figure 2 for preoperative MRI image of the brain and CT scanning 2 years later). Neurofibromatosis type I and Von Hippel-Lindau syndrome were genetically excluded. Thereafter, the patient functioned on his premorbid level without any neurological symptoms and returned to his parent’s home and continued during daytime the structured activity programme at his former institute for people with intellectual disabilities. Severe sleeping problems, intermittent urine incontinence and diarrhoea were still present. To improve his sleeping pattern, the treating physician prescribed 2 mg zuclopenthixol. Since no significant changes in his behaviour repertoire could be expected, neuropsychiatric consultation was not requested. However, at the age of 19, trio-based exome sequencing demonstrated a homozygous pathogenic nonsense variant in the first exon of the HNMT gene (g.138722149C>T: {"type":"entrez-nucleotide","attrs":{"text":"NM_006895.2","term_id":"66932961","term_text":"NM_006895.2"}} NM_006895.2 :c.88C>T(p.Gln30*)) leading to a premature stop codon, which was confirmed by Sanger sequencing. Both parents were shown to be heterozygous carrier of this variant. Figure 3 shows the Sanger sequencing electropherograms of the index patient and his parents. These findings corresponded with a diagnosis of MRT51. Because of this finding, he was referred again for specialised neuropsychiatric evaluation.

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(A) Aged 14 years. Preoperative T2-weighted-Fluid-Attenuated Inversion Recovery (FLAIR T2) MRI image of the brain showing right-sided cerebellar cystic tumour (cerebellar haemangioblastoma) with slight peritumoral oedema and a maximum cross-section of 56 mm, leading to compression of the fourth ventricle and slight displacement to the left (enhancing mural nodule and supratentorial obstructive hydrocephalus not visible). (B) Aged 16 years. CT scan image of the brain showing small residual cyst only with cross-section of 20 mm without any compression of the fourth ventricle.

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Sanger sequencing electropherogram of the index patient, and his parents showing in the grey field the homozygous mutations of the index patient (C replaced by T).

Second neuropychiatric referral

At examination, aged 19, a similar behavioural repertoire was present as during the first consultation, aged 12, in that he still displayed autistic, ritualistic and challenging behaviours with aggressive acts and self injuries. Active language was restricted to single words or short and simple sentences. Somatic and neurological examination disclosed no abnormalities. Height (172 cm) and weight (70 kg) were in accordance with his current biological age. Relevant haematological (eg, white blood cell count and thrombocytes) and biochemical parameters (eg, vitamin status, thyroid and liver parameters, glucose and lipid spectrum) were all normal still. Pharmacological treatment comprised two times per day 40 mg pipamperone, irregularly combined with 15 mg mirtazepine or 7.5 mg midazolam to improve his sleep pattern. Also, two times per day 20 mg omeprazole was prescribed. Again, psychological assessment was performed. Social and emotional development as measured with the Dutch scale for emotional development in people with intellectual disability (ESSEON-R 14 ) corresponded with a developmental age of 12 months and 18 months, respectively. As assessed with the VABS, developmental age scores on the domains of communication, daily activities and socialisation were 23 months, 23 months and 15 months, respectively, being not significantly different from those as established previously. With the Dutch scale for social life skills (SRZ 15 ), a developmental age of 2–3 years was established, corresponding with a cognitive level of 2–4 years, enhancing the risk of overestimation. He was then referred to a university outpatient department for child and adolescent psychiatry where the diagnosis of autism was confirmed. Subsequently, he attended the outpatient department of clinical pharmacology for treatment advice.

Because of the demonstrated homozygous mutation in the HNMT gene resulting in the complete absence of a functional HNMT, treatment with the antihistaminergic drug hydroxyzine in a daily dose of 25 mg and a histamine-restricted diet was prescribed. Since their efficacy was doubtful, it was advised to stop the use of psychotropics as mentioned before with the exception of omeprazole.

Outcome and follow-up

Until now, aged 23, treatment with 25 mg hydroxyzine in combination with a histamine-restricted diet resulted in normalisation of the patient’s sleep–wake cycle, significant reduction of aggression, improvement of speech and receptive language capacities, and complete continence for urine and faeces. The patient ( figure 4 ) still lives at his parents’ home following, like in previous years, during daytime an activity programme at the same institute for people with intellectual disabilities.

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Picture of the patient without any dysmorphic features: (A and B) aged 17 years and (C and D) aged 23 years.

Here, a 23-year-old severely intellectually disabled Dutch male patient born from second cousins is described in whom trio-based exome sequencing demonstrated a homozygous mutation in the HNMT gene matching a diagnosis of MRT51. Apart from one male patient with a homozygous mutation of the HNMT gene but without any phenotypic description (DECIPHER (324 002)), to the best of our knowledge, this is the first patient with this genetic syndrome after the publication of seven individuals from two unrelated families of Turkish and Kurdish descent, respectively. 12 Like in the affected members of these two families, also in our patient, global regression occurred around the age of 4 years, most pronounced regarding speech and language, in the absence of any dysmorphic features or congenital anomalies. Although not explicitly mentioned in the description of the patient histories of the two unrelated families from Turkish and Kurdish descent, it can be assumed that in all, like in our patient, a diagnosis of autism could have been made.

Unfortunately, in the publication of Heidari and coworkers, no information is given about either sleep pattern and intestinal problems or advised treatment regimen. In the here described patient, treatment with the antihistaminergic compound hydroxyzine in combination with a histamine-restricted diet resulted in normalisation of sleep pattern, complete continence, improvement of active speech and a significant reduction of aggressive challenging behaviours.

In conclusion, the behavioural phenotype of HNMT-associated MRT51 may comprise not only regression with loss of earlier achieved capacities around the middle of the first decade, but also autism, dysregulation of sleep–wake cycle and intestinal problems. The latter two may be effectively treated with the antihistaminergic compound hydroxyzine in combination with a histamine-restricted diet. Because of the attained marked and long-lasting improvement of this patients’ general functioning, in retrospect, the earlier postulated regression hypothesis may have to be reconsidered.

Patient’s perspective

We, the parents of the described patient, have seen a significant improvement in general functioning after the diagnosis was established and our son started the medication in combination with the histamine-restricted diet. He is now much calmer, sleeps well, shows no more aggression and has become completely potty-trained. It is also noticeable that he has pleasure again in his activities within the daily activity centre. Finally, we as well as his institutional supervisors can make with simple terms much better contact with him. We are very happy with all these positive developments.

Learning points

  • Medical professionals should consider whole exome sequencing as the starting point for aetiological investigation.
  • Brain histamine is crucial in physiological functions like sleep and stress regulation.
  • Histamine N-methyltransferase deficiency is associated with aggressive behaviours and mental retardation, autosomal recessive 51.
  • Antihistaminergic compounds that pass the blood–brain barrier such as hydroxyzine, combined with a histamine-restricted diet, normalise sleep pattern, reduce levels of challenging behaviour and ameliorate communication.

Acknowledgments

Written informed consent was obtained from the parents for publication of the case history of the patient; the parents also kindly provided the picture of the patient at present age. The patient was referred by the Centre for Consultation and Expertise, region West. The authors are indebted to the staff members of the Gemiva-SVG Institute for people with intellectual disabilities, location Zoeterwoude, for their careful observations of the behavioural status of the patient and the psychological assessments. For subsequent advises about treatment, the patient was referred to the outpatient department of clinical pharmacology at the Erasmus Medical Centre Rotterdam. MRI and CT images were reevaluated and selected by Dr GA Hoffland, (neuro)radiologist at the VieCuri Medical Centre, Venlo, the Netherlands.

Contributors: WMAV and JIME conceptualised and designed the study and reviewed the literature. WMAV assessed the patient, acquired the data and discussed the initial findings. WMAV and JIME reported the case history and drafted the manuscript. PKCJ commented on the literature review, initially evaluated the manuscript and created the figure showing the histamine neurotransmission process. AvH interpreted the genetic data and provided the Sanger electropherogram as well as the picture of the patient aged 17 (A and B). PKCJ and AvH critically reviewed the manuscript. All authors read and approved the final version of the manuscript.

Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests: None declared.

Patient consent for publication: Parental/guardian consent obtained.

Provenance and peer review: Not commissioned; externally peer reviewed.

Case Study of a Child with Intellectual Disability

In this intellectual disability case study, the author looks at designing an education curriculum for Meagan, a 14-year-old student.

Introduction

There are numerous interventions that have been designed to enable students with intellectual disability better cope with their condition. Most of these interventions have been hinged on the principle that respective educational programs should be tailored to complement the students’ strengths, and to supplement their weaknesses.

This is the same principle underlying the functioning of the K12 educational principle because it is centered on meeting individual student needs (K12 Inc. 2011, p. 1). The K12 educational paradigm mostly works through online communication but it has been seen to offer a lot of advantages to students with unique disabilities.

For instance, the educational methodology is known to provide rich, challenging and engaging content; an individualized learning plan; a learning coach; and cutting-edge technology in the provision of the best learning outcomes for intellectually disabled students (K12 Inc. 2011, p. 1).

When educating students with intellectual disabilities, it should be understood that, students are bound to have trouble in learning, retaining information and understanding information (Pearson Education Inc. 2011, p. 2).

Educators have often experienced such challenges, but comprehensively, there is a consensus among most stakeholders that it is vital to make accommodations for certain groups of students, and it is also crucial to make curriculum modifications for other students. In this regard, there seems to be a lack of consensus in coming up with one formula for handling students with intellectual disability.

This is the main framework for the advancement of this paper because this paper focuses on developing curriculum adjustments for a young man, Meagan. Meagan is 14 years old and has had a history of intellectual disability. This paper analyzes various dynamics of Meagan’s life, with the intention of making curriculum adjustments to provide an effective framework for learning.

To provide a good backdrop for the development of a good framework for learning, several aspects of Meagan’s life will be analyzed. These aspects include his family background, personal history, personal skills and personal abilities.

These factors will be analyzed systematically. Comprehensively, this analysis will be done with the aim of identifying one long-term aim or objective of the learning outcome and two short-term aims or objectives of the learning outcome.

Family Background

Meagan is the eldest child in a family of three children. His younger sibling is a girl, Sophia, aged nine years old. The youngest child is also a girl and she is three years old. Among his siblings, Meagan is deemed to be the child who has experienced most difficulty in learning. Meagan’s family hails from a middle-class society in Melbourne, Australia. His father works as a retired engineer in a local factory.

The mother works as a librarian in a local university. There has been no vivid or confirmed reports of intellectual disability among any of Meagan’s family members, though there have been unconfirmed reports of mental illness among some of Meagan’s relatives hailing from his father’s side of the family.

His aunt is said to experience occasional episodes of mental instability. However, there have been no confirmed reports of mental illnesses or cognitive disability from any of the family members of Megan’s mother.

Megan’s family professes the Christian faith, though they are not committed in their religion. However, Christianity has had an influence on Meagan’s life because he strongly identifies with his Christian faith. In the past couple of months, Meagan was baptized and currently devotes most of his time to his religious duties. None of Meagan’s family members pay much attention to religion.

His family also hails from a background of child neglect, with many of Meagan’s relatives having been abandoned by their parents at an early age. Meagan’s parents are no exception. The degree of attention they give Meagan is inadequate because little attention is paid to Meagan’s slow intellectual development. This has been going on since his parents confirmed that he was suffering from intellectual disability.

There is also an almost non-existent family support structure for Meagan to cope with his condition. Moreover, there is very little evidence of family cohesion among Megan’s family members, starting from his parents to his siblings. In this regard, Meagan is left to live with his condition, alone.

Personal History

Meagan hails from the aboriginal community of Australia. He was prematurely born because he was birthed at only seven months into his mother’s pregnancy. During his infant life, Meagan was abandoned by his mother, even before he was completely weaned from her. This forced his father to look for a baby sitter.

Nonetheless, despite these challenges, Meagan lived to have a vibrant childhood, with no signs of failing to cope with his playmates or friends. To a large extent, Meagan has been deemed a “normal” child. In his teen years, he used to participate in church activities (for the young) and also took part in school activities including extracurricular games.

He was a vibrant member of the school choir and an active member of the school soccer club. However, Meagan’s repeated the seventh grade level (twice) because he failed to meet the minimum threshold for admission into the eighth grade.

For a long time, he experienced a lot of difficulty trying to meet the minimum threshold for admission into sequential class grades because he always trailed among the last five candidates in any class. This was witnessed from his admission into the first grade.

However, Meagan’s academic background was characterized by exemplary performance in various academic writing competitions. His teachers termed him as a very creative writer and he never disappointed in his English creative writing assignments.

However, this was as far as his academic excellence stretched. Currently, Meagan undertakes blue collar jobs on minimum wage but there is increasing pressure among his peers for him to continue with his studies.

Personal Skills and Abilities

Meagan has a creative mind. He has shown interest in creative writing from his younger years but as he grew older, his interest changed. However, as explained in earlier sections of this study, in his young years, Meagan used to write exemplary creative works. His interest however shifted into music when he grew a little older.

So far, he has been able to record music in a local music company but his talents have never been fully exploited because of the lack of adequate finances to bankroll his musical ambitions. Moreover, there has been limited support from most of his family members in his quest to pursue music. However, due to his strong religious background, Meagan hopes to produce music for his local church.

The main aim of undertaking a curriculum adjustment for Meagan is to enable him to earnest his abilities and use them to the optimum benefit of his talents.

To enable Meagan to be independent and able to communicate his needs in effective and acceptable ways.

To assist Meagan to excel in personal growth and compete with other students in varying levels of excellence.

Curriculum Adjustments

Making the best curriculum adjustments for Meagan entirely depends on the nature of his disability. From previous sections of this paper, we have affirmed that Meagan suffers from a slow comprehension of academic disciplines, but he has a stronger grasp on creative works.

Here, there are several curriculum adjustments that can be done to ensure Meagan lives to his full potential. In this regard, this paper proposes several curriculum adjustments, based on the K12 teaching model which aims to provide individualized learning for students with intellectual disability. They are outlined below:

Interest and Student Ability

To ensure Meagan lives to his full potential, it is crucial to make curriculum adjustments to suit individual needs, abilities and preferences. A uniform curriculum which is meant to work for the majority student population is bound to fail for Meagan because it will not be specific to Meagan’s abilities and potential.

In this regard, it is therefore crucial for the curriculum to be designed to emphasize on creative works, as opposed to academic excellence, to enable Meagan to succeed in arts (Queensland Government 2011). Emphasis should be further made to ensure the school grading criteria focuses the same level of attention it gives to sciences (and other disciplines) as it does with art subjects.

Such a grading criterion would ensure students are assessed on all fronts, and not just academic. When adjusting the learning curriculum, it is also crucial for teachers to structure the curriculum in a manner that guarantees the grouping of students into different ability groups.

Not all students have the same type of abilities and therefore, it would be beneficial for teachers to group Meagan into the “creative works” group, so that he can share his creative ideas with his peers (Foreman 2009, p. 170).

Adjusting the Learning Outcomes

Adjusting the learning outcomes is an important adjustment to the learning curriculum if the school grading process is to be fair. Here, “fair” means to accommodate intellectually disabled students (Snowman 2011).

Accommodation of Diverse learning Styles

Intellectually disabled students are normally faced with the challenge of failing to comprehend learning instructions as fast as other students do. However, research studies affirm that some of these students prefer certain learning styles in place of others (Queensland Government 2011). Moreover, educationists have shown that certain learning styles are more effective for intellectually disabled students, while others are not.

Such dynamics withstanding, it is crucial to make curriculum adjustments that allow for the accommodation of diverse learning styles for improved efficacy in learning. For instance, conventional or online lessons can be administered using various learning materials such as DVDs, CDs, Books, videos and such materials (Browder 2011, p. 332).

The inclusion of such diverse strategies is set to improve the level of interaction between the students and the teachers because an appropriate learning style would motivate the students to pay more interest in the learning process. This improves the students’ level of engagement. Moreover, such curriculum changes ensure the learning process is rich in its contents.

Integrating a Learning Coach (Parent Involvement)

It is crucial to integrate the input of a learning coach into the school curriculum to encourage the participation of Meagan’s parents in his educational endeavors. The parents will be the learning support team.

Already, we have established that Meagan hails from a family that pays little attention to his educational needs. Here, there is a strong need to integrate the parents’ input into Meagan’s educational projects to ensure he enjoys a support structure, aside from the traditional teacher-student framework.

Though an integration of the role of the learning coach into the school curriculum may not necessarily be confined in the parent-student framework, it is crucial for this integration to be developed in this framework, if Meagan has to develop better learning skills (National Parent Teacher Association 2009, p. 1 ) .

This is because a great degree of the deterioration of his intellectual ability comes from a lack of effective support structure that enables him to improve his learning skills (Queensland Government 2011).

For long, this need has been ignored, and as a result, Meagan has continually performed poorly in his academic endeavors. Nonetheless, the learning coach framework can be designed in various ways. For instance, the school curriculum can be designed to include the participation of parents in the student’s projects, at least once or twice a semester.

Parents may be required to give consent, provide counsel or similar activities on the student’s tasks, thereby encouraging him to better develop with his learning activities. The inclusion of this principle into the school curriculum may be indirectly beneficial to Meagan because it is bound to have a motivating effect on him. This is the first strategy that can be adopted in encouraging parent participation.

The second strategy that can be adopted by the school is implementing a family-school partnership policy where parents and teachers agree on a common framework where parental involvement is assessed, and the parents’ progress is measured (Westwood 2011, p. 15).

This recommendation emanates from research studies which have shown that schools which have an efficient family-school partnership perform better than schools which lack this policy (Queensland Government 2011).

Finally, the school should make adjustments to the curriculum to ensure that parents take part in the decision making process of activities affecting student achievement. Here, parents should be allowed to be part of advisory committees which affect student achievement.

This paper proposes that, adjustments in the school curriculum which have to be made to accommodate Meagan’s skills and abilities have to be done within the confines of earnesting his skills and abilities (to use them for the benefit of his personal growth). In this regard, this paper proposes that the school curriculum should be tailored to accommodate Meagan’s artistic skills.

Moreover, the learning outcome should be adjusted to accommodate the same skills and abilities. From a holistic perspective, this paper also proposes that diverse learning styles should be accommodated into the learning curriculum to ensure students with intellectual disability learn in an efficient way.

These recommendations are carved from the K12program. Nonetheless, this paper also puts a lot of emphasis on the importance of incorporating parent input in the school curriculum. Integrating these principles will go a long way in enabling Meagan to earnest his strengths and use them to the optimum benefit of his talents.

Browder, D. (2011) Teaching Students with Moderate and Severe Disabilities . New York, Guilford Press.

Foreman, P. (2009) Education of Students with an Intellectual Disability: Research and Practice (PB). New York, IAP.

K12 Inc. (2011) How a K12 Education Works . Web.

National Parent Teacher Association. (2009 ) Enhancing Parent Involvement. Web.

Pearson Education Inc. (2011) Teaching Students with Special Needs . Web.

Queensland Government. (2011) Intellectual Impairment – Educational Adjustments. Web.

Snowman, J. (2011) Psychology Applied to Teaching . London, Cengage Learning.

Westwood, P. (2011) Commonsense Methods for Children with Special Educational Needs . London, Taylor & Francis.

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IvyPanda. (2023, October 29). Case Study of a Child with Intellectual Disability. https://ivypanda.com/essays/case-study-of-a-student-with-intellectual-disabilities-essay/

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IvyPanda . 2023. "Case Study of a Child with Intellectual Disability." October 29, 2023. https://ivypanda.com/essays/case-study-of-a-student-with-intellectual-disabilities-essay/.

1. IvyPanda . "Case Study of a Child with Intellectual Disability." October 29, 2023. https://ivypanda.com/essays/case-study-of-a-student-with-intellectual-disabilities-essay/.

Bibliography

IvyPanda . "Case Study of a Child with Intellectual Disability." October 29, 2023. https://ivypanda.com/essays/case-study-of-a-student-with-intellectual-disabilities-essay/.

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Crime and victimisation in people with intellectual disability: a case linkage study

  • Billy C. Fogden 1 ,
  • Stuart D. M. Thomas 1 , 2 , 4 ,
  • Michael Daffern 3 &
  • James R. P. Ogloff 3 , 4  

BMC Psychiatry volume  16 , Article number:  170 ( 2016 ) Cite this article

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Studies have suggested that people with intellectual disability are disproportionately involved in crime both as perpetrators and victims.

A case linkage design used three Australian contact-level databases, from disability services, public mental health services and police records. Rates of contact, and official records of victimisation and criminal charges were compared to those in a community sample without intellectual disability.

Although people with intellectual disability were significantly less likely to have an official record of victimisation and offending overall, their rates of violent and sexual victimisation and offending were significantly higher. The presence of comorbid mental illness considerably increased the likelihood of victimisation and offending; several sex differences were also noted.

Conclusions

People with intellectual disability are at increased risk for both violent and sexual victimisation and offending. The presence of comorbid mental illness aggravates the risk of offending and victimisation. Future research should focus on a more nuanced exploration of the risks associated with intellectual disability and specific mental disorders and related indices of complexity.

Peer Review reports

People with an intellectual disability (ID) are a marginalised and vulnerable group. The available research suggests an association between ID and criminal offending [ 1 – 3 ]; this has served to propel public fear and reinforce perceptions of the need for social distance. However, the evidence from which these conclusions have been drawn remains far from definitive, with significant methodological limitations marring what are arguably tentative conclusions [ 1 , 2 , 4 ]. A related area that has received much less scientific attention is criminal victimisation, despite a compelling argument that specific deficits in interpersonal functioning and cognitive capability potentially increase exposure to dangerous situations, therefore contributing to the likelihood of criminal victimisation [ 5 – 14 ].

Intellectual disability and criminal victimisation

Intellectual Disability is characterised by significant impairments in intellectual functioning alongside difficulties in daily tasks, personal responsibility and communication [ 15 , 16 ]. From a theoretical standpoint, Routine Activities Theory [ 17 ] conceptualises victimisation in relation to an interaction between an available victim, the absence of a capable guardian, and a motivated offender. It reasons that people with similar lifestyles or routine activities face similar victimisation risks as they are exposed to risky places and potential offenders [ 5 ]. Some research has suggested that people with ID are most commonly victimised by their carers [ 5 ]. Routine Activities Theory would argue that victims are easily accessible in their home / living environment (availability) and there is less protection of the victim if the perpetrator is the guardian (absence of a capable guardian); the carer offender may be motivated to offend due to carer stress, a provocative or frustrating incident, in this context offending may be facilitated by increased potential to evade prosecution (motivated offender). A study by Sobsey [ 18 ] supports this proposition and demonstrates the substantial vulnerability of victims with ID, noting that 44 % of perpetrators had contact with a victim through disability services, in which the victim was in close proximity with the perpetrator and was less likely to recognise or report a crime due to the apparent legitimacy of the disability service. As such, victimisation can be seen as a product of complex interactions between the environment, the victim(s) and the perpetrator(s).

The available research is consistent with this theoretical stance, noting increased rates of victimisation among people with ID compared to the general population. Wilson and Brewer [ 6 ] estimated that a diagnosis of ID doubled the risk for victimisation and vastly increased the likelihood of sexual assault and being the victim of robbery compared to the general community. Other studies report similar findings, estimating that the risk of victimisation is between three and seven times higher in people with ID compared to the general community [ 11 , 13 , 19 ]. Of particular concern are the high rates of sexual victimisation [ 19 – 22 ] and the finding that the majority of crimes were committed multiple times [ 23 ], across a range of ages and environments [ 13 , 24 ]. Of note, these victimisation experiences are rarely reported to authorities [ 6 , 7 , 19 , 23 ].

Surprisingly, there is little knowledge on the relationship between gender and victimisation among people with ID. While there is some evidence from general population estimates implicating males as being more vulnerable to victimisation [ 25 ], it is not known whether this trend exists in the ID population. That being said, tentative conclusions can be drawn from general disability research, which suggests that females are more susceptible to violent and sexual victimisation compared to males [ 20 , 26 ]. In sum, the available literature suggests that people with ID are at a greater risk of victimisation compared to non-disabled members of the general public, however it is far from a robust conclusion. This is for two reasons; first, of the few studies conducted, too many focus on outdated retrospective self-report data, which rely on the individual recalling events and judging whether a crime was committed. This presents a difficulty with people who have an ID as there are often disruptions in their memory functioning and judgements about their own, and the activities of others, when recalling crimes [ 7 ], consequently past research may either under report or over report actual rates of victimisation. Second, the operational definition of ID varies between studies and importantly, samples tend to be small and lack community comparison groups; both of which would arguably help contextualise the nature, direction and extent of victimisation [ 10 ].

Intellectual disability and offending

Like victimisation, the functional deficits evident in ID suggest that people with ID may also be likely to offend. This sentiment has a long tradition [ 27 ], attracting consistent research attention over the years; with studies claiming that people with ID are overrepresented among individuals processed by the criminal justice system [ 28 – 30 ]. The estimated prevalence of offending in people with intellectual disability ranges from two to ten per cent and varies depending on the population and methods utilised [ 27 , 31 ]. There is much variation within prison populations, with estimates ranging from less than 2 % to as high as 30 % [ 29 , 30 ], yet there is little agreement on a standardised conceptual definition of what criminal offending is across these studies. A recent systematic review, pooling results from ten studies and including a total of 11,969 prisoners concluded that typically 0.5 % to 1.5 % of prisoners are diagnosed with intellectual disabilities [ 32 ]. Estimating offending prevalence with prison populations is problematic as many individuals with ID have been diverted into the community or forensic services rather than prison, so there may be an under-estimation of the true prevalence using this method.

Court appearances and police contacts provide an alternative means of establishing prevalence and are more sensitive, as these records more adequately capture the extent of contact people have with the criminal justice system. The available literature at this interface estimates that around 1 in 10 people with ID will come into contact with the police or courts as a perpetrator of crime [ 14 , 33 ]. These rates are substantially different to those in the general population, with males with ID being three times more likely than males in the general public to have a prior conviction, while females have been found to be four times more likely to have a prior conviction. Interestingly, this figure was more pronounced for violent offences, with males four times higher and females 25 times higher, therefore potentially suggesting a significant vulnerability to violent offending among people with ID [ 34 ].

Some evidence suggests that people with ID are susceptible to the perpetration of specific crimes, such as sexual offences [ 2 ]. Further, there are additional factors that potentially complicate the hypothesised link between ID and offending, with findings revealing that complexities such as childhood neglect, physical health problems, mental health problems and perinatal adversity are particularly common among offenders with ID. There is also some suggestion that offenders with ID may be less effective at evading police and more visible as perpetrators [ 5 ] and this is the reason for increased prevalence rates.

The relationship between crime perpetration and ID and mental illness, which is highly comorbid with ID [ 33 ], has received empirical scrutiny. Hodgins and others [ 34 ] estimated that the presence of mental illness increased offending by five times in psychiatric inpatients compared to those with ID who had not been admitted for mental health treatment. Additionally, Vanny [ 33 ] found that nearly half of those people with ID who were referred to court had a mental illness, thereby suggesting a more complex group who may be at increased risk of criminal offending.

Aims and hypotheses

Against this background, this study sought to determine the prevalence of criminal victimisation and offending in an ID population and to compare this to a sample of people drawn from the general population. Based on the findings of Wilson and Brewer [ 6 ] it was hypothesised that people with ID would have higher rates of victimisation and offending relative to the community sample. Secondly, based on the findings by Sobsey [ 19 ], sexual crimes were expected to be increasingly more common in the ID group. Thirdly, the added complexity brought about by having comorbid mental illness [ 34 ] was hypothesised to increase the risks of victimisation and offending above that observed in people with ID only. Finally, males with ID were hypothesized to be at greater risk of both victimisation and offending than females with ID.

The study employed a case linkage design to compare rates of criminal victimisation and offending (operationalized as criminal charges) between those with a diagnosis of intellectual disability and a community comparison sample. The research complied with contemporary Australian National Health and Medical Research Committee (NHMRC) guidelines for conducting epidemiological research; administrative permission was granted for access to data stored on contact-based databases (see below).

Participant-level data were gathered through three archived databases; the Restrictive Intervention Data System (RIDS), the Victorian Psychiatric Case Register (VPCR) and the Victoria Police Law Enforcement Assistance Program (LEAP). The RIDS database is a state wide reporting system for individuals with a disability who have received a routine, pro re nata, or emergency restrictive intervention as defined in the Disability Act 2006 (Vic) . Section 3 of the Act defines ID as the concurrent existence of a significant sub-average general intellectual functioning, and significant deficits in adaptive behaviour, both which become manifest before the age of 18 years. Under the Act , a restrictive intervention can include chemical restraint, mechanical restraint or seclusion; these are mandatorily reported to Disability Services and recorded on the RIDS database and can only be used when they represent the least restrictive option. Episodes are updated monthly; individuals may only have a record of a single restrictive intervention or may be subject to repeated incidents of restrictive interventions over time. Each individual on the RIDS system has a unique client identifier. The RIDS database contains data drawn from over 150 government disability institutions across Victoria, Australia. All individuals included on the database from 1 July 2007 up till the end of 2012 were eligible for inclusion.

The VPCR (established 1961) is the state wide public mental health database in Victoria, Australia. It is a contacts-based database and documents when and why an individual comes into contact with public mental health services as well as a variety of other data including diagnostic categories, the number of contacts with services and dates and periods of admission and discharge. The VPCR records mental health diagnoses according to the International Classification for Mental Disorders version 9 and 10 (ICD 9, 10), based on thorough clinician assessments. The database does not capture contacts with primary care providers or private services so may underreport some high prevalence disorders such as anxiety, depression and substance use disorders.

The Law Enforcement Assistance Program (LEAP) database is a state wide reporting system maintained by Victoria Police that details whenever an individual has come into contact with police as a suspect, offender, victim, witness or person in need of assistance. It has been in its current format since October 1993. Incidents of offending and victimisation were extracted in raw form and, consistent with the extant literature, categorised as either: (1) violent, (2) sexual, or (3) non-violent non-sexual offences. Violent offences included common assault, murder, aggravated robbery, as well as any form of contact sexual offence; sexual offences involved indecent assault, rape and incest; and non-sexual non-violent offences included theft, property damage, substance misuse, threats, arson and non-contact stalking. The same three categories were used to classify both victimisation and offending histories. For the offending variables, the level of a criminal charge was selected. This point in criminal proceedings was selected in line with other recent research; a charge being indicative that there was a good deal of confidence that the alleged offence should be dealt with in a criminal court. Henceforth, for simplicity, the term offending is used to enable comparisons to be made.

Data linkage procedure

Participant information from all databases were compiled into a single file by matching participant-level details across each database using a master list (containing full name, date of birth and gender along with a unique study ID number). Deterministic and probabilistic matching algorithms were used to maximise potential matches between databases; where individual matches were found, all relevant contact-level data were extracted. Rates of contacts and counts of criminal charges and victimisation episodes were compared to those in a random community sample from a related study of 5000 males and females drawn from the Australian Electoral Role whose case ascertainment for mental health and police contact histories had been determined using an identical methodology and the same suite of databases [ 35 ]. Due to the nature of the data available for the community sample, the offending history variable used ‘conviction’ to classify an offence history outcome for the community sample.

Approach to analysis

Both individuals with ID and community comparison participants were compared to determine the prevalence rates of offending and victimisation in each group. The ID sample was split into two subgroups, differentiating: (1) those who had a primary diagnosis of ID and a secondary diagnosis of any mental illness (Comorbid ID group) from (2) those solely with an ID (ID only group). Prior to analysis the data were checked for missing values and a randomly selected 10 % of the ID cases ( n  = 260) were recoded and crosschecked to check for spurious data entry errors.

Variables of interest were cross-tabulated and compared using Chi Squared tests of Association, substituting Fishers Exact test statistic where cell numbers in contingency tables fell below n  = 5. Odds ratios and relative risk statistics were then calculated, along with 95 % confidence intervals applying Miettinen’s test-based approach [ 36 ]. All associations were considered statistically significant at an alpha level of .05. Effect sizes were calculated using Cohen’s d , with traditional cut-offs used to determine small, medium and large effects [ 37 ]. Data were also stratified according to gender, to ascertain whether the risks for particular offence or victimisation experiences differed between males and females.

General characteristics

The full sample comprised 2600 participants ( Males =  1684, 64.7 %, Females = 916, 34.2 %). The community comparison group included 4830 individuals ( M  = 2392, 49.5 %, F  = 2438, 50.5 %). The community group were significantly older than the ID group (ID = 35.71 (16.57), community = 39.12 (12.55), t =9.95 (7428), p  < .0001) with males significantly younger in the ID group ( M  = 34.12 (16.39), F =  38.66 (16.50), t =  7.13 (2911), p  < .0001). There was no difference in age between males and females in the community group ( t =  0.826 (4477), p  = 0.409). Of those diagnosed with an ID, over a quarter ( N  = 709, 27.2 %) also met criteria for a comorbid mental illness and formed the Comorbid subgroup while the remaining ID sample ( N =  1891, 72.7 %) represented the ID only subgroup.

  • Victimisation

The community group were significantly more likely to have an official history of victimisation compared to the full ID sample, with the risk of victimisation being two times higher. However, at the specific crime level the rate of victimisation increased significantly for the ID sample with the rate of violent victimisation two times higher, while sexual victimisation was nearly six times higher compared to the community; effect sizes were moderate to large (Table  1 ). Those with ID and a comorbid mental illness had the highest rates of victimisation with a three-fold increase for violent victimisation and a ten-fold increase for sexual victimisation compared to the community. In contrast, the ID only group had higher rates of victimisation relative to the community sample, however they were victimised at a rate less than the comorbid group. Across all victimisation episodes, the comorbid ID group had approximately double the risk of being victimised compared to the ID only group (Table  2 ).

Gender differences for victimisation

There were no significant differences in overall victimisation rates between males and females in the total ID group (χ 2  = 1.67, p  = .1962). In the community sample there were similar proportions of males and females, however the overall risk for being victimised was 1.38 times higher for males than for females (RR = 1.38, 95 % CI = 1.29–1.49).

There were substantial differences between the ID sample and the community group; the risk of violent and sexual victimisation being three and five times (respectively) higher for females with ID compared to females in the community (RR = 3.07, 95 % CI = 2.44–3.86; RR = 5.05, 95 % CI = 3.45–7.39). Males with ID were violently victimised at a rate nearly two times that of males in the community (RR = 1.76, 95 % CI = 1.47–2.10) and sexually victimised at a rate in excess of 11 times higher (RR = 11.79, 95 % CI = 6.14–22.65). Females experienced violent victimisation at a significantly higher rate compared to males in the ID sample (RR = 3.45, 95 % CI = 2.68–4.45). Sex differences according to other victimisation types were not significantly different.

Criminal offending

Less than 10 % of the entire ID sample had a record of criminal charges according to the police LEAP database. There were no significant differences in the rates of offending between the ID sample overall (224/2600, 8.6 %) and the community sample (429/4830, 8.9 %). However, the ID sample violently offended at a rate three times higher than the community and sexually offended at a rate nearly eight times higher. By contrast, the rate of non-sexual non-violent offending was lower than that found in the community sample (Table  3 ).

The ID only group violently offended at a rate 1.6 times greater, and sexually offended at a rate 3.6 times that of the community sample. The most pronounced differences were again between the comorbid sample and the community sample with the comorbid sample offending at a rate 6.5 times greater than the community for violent crimes, with this rate increasing to 18.9 times higher for sexual offences. The increased rates of offending in the comorbid group were similar even when compared to the ID only group, with a four-fold increase in violent offending and a five-fold increase in sexual offending (Table  4 ).

Gender differences for offending

Among the Total ID sample, males were more likely to have a record of criminal offences compared to females (χ 2  = 17.53, p  < .0001), with this result also reflected in the community sample with offence convictions (χ 2  = 196.43, p  < .0001). Both males and females in the total ID group had significantly higher rates of criminality compared to males and females in the community group. The most pronounced difference was for females, with females with ID violently offending at a rate 11 times higher than females in the community (RR = 11.64, 95 % CI = 5.42–25.01). Males violently offended at a rate double that of males in the community (RR = 2.01, 95 % CI = 1.59–2.54) with the rate of sexual offending being nearly six times higher (RR = 5.84, 95 % CI = 3.50–9.74). Comparison of confidence intervals showed that the relative risk between the total ID group and the community was significantly higher for females than for males.

This study investigated victimisation and offending histories in a sample of people with intellectual disability and a community comparison sample using a case linkage design. The results indicated that, overall, people with intellectual disability were less likely to have an official history of victimisation and were no more or less likely to have a history of criminal offending than people without intellectual disability. Of note, however, the ID group were significantly more vulnerable to violent and sexual victimisation and offending compared to the community.

These findings suggest that members of the general community are more likely to have a police record as a victim of crime overall, with the vast majority of these crimes being non-violent and non-sexual in nature. This finding is consistent with some prior research [ 2 , 38 ], but contrary to previous theory and other research, which has suggested pronounced vulnerabilities for people with ID across all crime types [ 5 , 6 , 10 , 18 ]. Two explanations may account for this finding. First, individuals in the ID sample may have had less exposure to certain types of victimisation experiences due to the nature of their community and/or residential living circumstances. Alternatively, non-violent non sexual crimes may be under-reported by people with ID, who may not be aware of appropriate avenues for reporting, may be unable to recognise more ambiguous non-violent non-sexual crimes, may not be progressed to police services by carers/residential staff, or that they may fear reporting a person who they depend on [ 5 ].

Baladerian and others [ 23 ] noted that less than half of violent and sexual crimes against people with ID were reported to police, and of those reported, over half said nothing happened and less than 1 in 10 perpetrators were subsequently arrested. Participants in that study cited a lack of confidence in the criminal justice system, fear of retribution and poor knowledge of reporting avenues as key barriers to reporting. The potential for underreporting should be considered. Practically, efforts to support vulnerable populations report crime should be considered.

Despite the community having a higher rate of victimisation for crime overall, the current findings demonstrate that serious offences such as violent and sexual crimes are statistically more prevalent among people with ID, which supports the study hypotheses and previous research findings [ 11 , 13 , 19 – 22 ]. Roughly 1 in 6 people in the ID sample had reported violent victimisation to police, which was twice the rate of the community; furthermore 6 % had reported sexual victimisation, which was nearly six times higher than the community rate. These figures are concerning and provide robust epidemiological insight into the extent of an under researched problem and supports the conclusions of previous smaller scale studies which noted the heightened risk for violent and sexual crimes specifically [ 6 , 13 , 19 ].

Of particular interest to the current study was the influence of gender on victimisation. Findings indicate that males in the community group were more likely to have records of being victims than females, consistent with prior research [ 25 , 39 – 41 ]. Interestingly, this pattern of victimisation was not evident in the ID sample where there was no difference among victimisation types for gender, except for violent victimisation, which was significantly higher for females compared to males. This result is substantiated by the large difference in violent and sexual victimisation between the ID group and the community, for females more so than males, suggesting that females with ID are an especially vulnerable subgroup. What makes them specifically vulnerable to violent crime is unclear in the literature with only one report highlighting a possible gender difference [ 27 ]. The findings from the present study, coupled with the continued lack of consensus in the literature, should act as a catalyst to focus more on elucidating potential differences, and if so why these exist, as at present females with ID are particularly vulnerable to serious victimisation.

The rate of criminal offending, in this sample operationalized as criminal charges being laid, was entirely consistent with previous studies [ 14 , 33 ]. In this study, the overall rate of offending did not differ between the intellectual disabled and the community groups, with less than 10 % of both samples having an official record of offending. However, like victimisation, violent and sexual offending were statistically more common for people with ID, with offending six and a half times higher for violent crime and nearly 19 times higher for sexual crimes. This result can be interpreted using Routine Activities Theory [ 17 ] which postulates that a greater exposure to crime-inducing situations and personal reactions from the person with ID can make them more vulnerable to victimisation. This can also be applied to offending situations where an individual is similarly exposed to dangerous situations and there is still a potential for the individual to be a victim or an offender in an ambiguous and threatening situation. Empirical research corroborates this theoretical assumption and the current findings, which note a disproportionate number of people with ID in the criminal justice system and suggest their particular susceptibility to sexual offending [ 2 , 14 , 33 , 34 ]. In line with the Routine Activities Theory [ 17 ] the higher rates of offending may be related to the significant environmental and individual challenges faced by people with ID [ 2 ]. While offending may be more pronounced in people with ID, there is also a greater propensity for parental adversity, low socio economic status and mental illness. Future research should therefore seek to discern the relative importance of these variables to crime in ID populations.

Comorbid mental illness

The presence of a co-occurring mental illness significantly increased the likelihood of people with ID having both victimisation and offending histories. Mental illness has been associated with victimisation and offending in other vulnerable populations [ 42 – 45 ] with one study suggesting that mental illness may be linked with criminality in people with intellectual disability [ 46 ]. The current findings suggest that mental illness complicates the association between ID and victimisation and offending considerably (almost doubling the rates of both).

The presence of a mental illness may further limit the functionality of the individual with ID and may intensify their exposure to dangerous situations and reactions to potential perpetrators. The association between ID with comorbid mental illness and increased rates of victimisation and offending indicates that treating mental illness alongside managing deficits associated with ID could have beneficial effects for crime prevention and victimisation. However, while mental illness appears to be pivotal in influencing susceptibility to crime, there may be other contributing factors such as substance abuse, outside of the scope of the present study, which further complicates the relationship.

The present study complements the existing literature base providing a robust contemporary prevalence estimate for victimisation and offending among people with ID. It adds further weight to prior research findings regarding criminality among those with ID and proposes that people with ID are at a significant disadvantage and are over represented in crime figures. By illustrating the magnitude of the problem, using a robust epidemiological design, it is hoped that there will be greater research into why this problem exists and how this effect can be minimised.

Limitations

The findings in the current study may be limited by several factors that were inherent in the databases used. First, the Restrictive Interventions Database System (RIDS) may not be representative of all people with intellectual disabilities as individuals who are included on this reporting system have been subject to at least one restrictive intervention. This may have led to an over or underestimation of the true rates offending and victimisation reported here. While not available through the current dataset, taking into account a frequency criterion relating to the number of restrictive intervention episodes experienced by the person with ID as a potential confounding factor may help further develop our understanding of both risks and vulnerabilities to crime among people with ID who have more complex presentations or who present with more challenging behavioural management issues. Second, notwithstanding the challenges associated with diagnosing mental disorders among people with ID [ 47 , 48 ], rates of mental illness were estimated from a public mental health database which, as noted in the methodology, under-reports some of the more high prevalence disorders. That being said, a strength with the current methodology was that case ascertainment of mental disorder and police contact for individuals in the community comparison sample was identical, thereby leading to direct comparability and greater confidence in the magnitude and direction of associations reported here. Thirdly, the findings may underrepresent the extent of crime involvement in ID as victimisation and offending data were based on contact with the police, where official reports were made and subsequently recorded. From the literature, we know that individuals with ID typically under report crimes and may find it difficult to recognise these crimes. It is likely that the current estimate of crime is more conservative compared to true prevalence figures [ 23 ]. Further, it was not possible to statistically control for the potentially confounding effect of age as the ID and community databases were independent of each other. While this is unlikely to affect the direction of the associations with violent and sexual offending, the younger age of the ID sample may explain the finding pertaining to their lower risk of being the victim of other types of non-sexual non-violent crimes found with this sample, although the evidence remains inconclusive. Lastly, the community comparison sample operationalized offending at the level of conviction, while the ID sample used the level of criminal charge; this may mean that the statistical differences presented may represent an upper confidence limit for estimates increased risks of both perpetration and victimisation histories.

Directions for future research

Future research should seek to replicate and extend on current findings, which represent a preliminary yet robust insight into the vulnerabilities of those with ID. Of particular interest is future research is differences between specific age groups, mental illnesses and specific licit and illicit substances. Mental illness was a key factor in the association between intellectual disability and crime perpetration, the influence of specific mental illness on ID was not considered in the current study, as diagnoses are difficult to establish with comorbid ID. A future study with a greater focus on the robust assessment of mental illnesses and substance use could identify more specific disorders that are pertinent to both victimisation and offending; such information would be critical to informing both risk assessment and treatment planning.

Results of the current study provide robust prevalence estimates indicating that, statistically speaking, people with intellectual disability are at greater risk of experiencing violent and sexual victimisation and more likely to violently and sexually offend than non-disabled people living in the community. Future research should seek to elucidate why these differences can and do exist and should account for other contributing factors that may influence this relationship.

Abbreviations

intellectual disability

Law Enforcement Assistance Program

National Health & Medical Research Council

restrictive interventions data system

Victorian Psychiatric Case Register

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Acknowledgements

We would like to thank Leanne Sargent and Dr David Ballek at Victoria Police, and Dr Jeffrey Chan, Dr Lynne Webber and Dr Frank Lambrick at the Office of the Senior Practitioner.

The project was funded as part of an Australian Research Council Linkage Grant with the Victorian Office of the Senior Practitioner and Victoria Police. Representatives from the Office of the Senior Practitioner and Victoria Police helped develop the design and scope of the study and provided dedicated personnel to collate and extract the contact-based data required for the linkage methodology. Representatives from these two organisations also received copies of the draft manuscript for their information and were invited to respond with any comments and/or suggestions.

Availability of data and materials

Due to the sensitive nature of the contact-level data used from multiple agencies, and constraints of the ethical approvals, the linked data are not publically available.

Authors’ contributions

BF coded, analysed and interpreted the data and contributed to the drafting of the manuscript. ST was involved in the conception, design, analysis and interpretation of the research findings and contributed to the drafting of the manuscript. MD was involved in the conception of the study, interpretation of the research findings and contributed to the drafting of the manuscript. JO was involved in the conception of the study, interpretation of the research findings and contributed to the drafting of the manuscript. All authors read and approved the final manuscript.

Competing interests

The authors declare that they have no competing interests.

Consent to publish

Not applicable.

Ethics and consent to participate

The study design utilised existing contact-based data collected routinely by the Department of Human Services and Victoria Police. The data linkage methodology is supported through guidelines provided in the National Statement on Ethical Conduct in Human Research [ 49 ] relating to the use of databanks. Of note, Section 3.2.4 of the document states that ‘approval may be given to the use of identifiable data to ensure that the linkage is accurate, even if consent has not been given for the use of identifiable data in research’ (pg. 28). The project was approved by University of Wollongong Human Research Ethics Committee and Victoria Police Human Research Ethics Committee.

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Fogden, B.C., Thomas, S.D.M., Daffern, M. et al. Crime and victimisation in people with intellectual disability: a case linkage study. BMC Psychiatry 16 , 170 (2016). https://doi.org/10.1186/s12888-016-0869-7

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Case Study: Accommodating Students with Intellectual Disabilities

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Students with intellectual needs have problems with their cognitive capability and usually lack skills in social behavior and self-care (Jones & Goble, 2012). Even though there is a wide assortment in the cognitive ability of individuals with intellectual disabilities, they generally have an IQ of 70-75 or even lower (Gordon, 2018). For students who are diagnosed with a disability, learning is usually faced with numerous challenges. Some of these challenges include being excluded from classrooms, being left out of field trips and lacking enough staff to help them learn (Hartmann, 2015). Despite their entitlement to inclusive education, students who have intellectual disabilities face academic and social barriers, which exclude them and makes them vulnerable to bullying (Gordon, 2018). The outcomes paint a stark picture of the way the education system fails to accommodate these individuals. There is a need to accommodate these students in schools so that they receive the equitable quality of education they deserve (Jones & Goble, 2012). Schools need to make adjustments on the way information can be presented to these individuals so that they can better engage in learning (Massouti, 2018). This report offers an ​analysis of the nature of inclusion, inclusive schools and suggests strategies to support and promote accommodation to students with intellectual needs.

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Building capability in NSW health services for people with intellectual disability: the Essentials

Case studies.

Drew is a 26-year-old Aboriginal man who has an intellectual disability and cerebral palsy. He lives with his parents in rural NSW. He has a nasogastric tube in situ that is used for nutritional supplements and medication.

He aspirated nutritional forrnula while in respite care and was admitted to hospital with pneumonia.

There had been previous discussions with Drew's family about having a gastrostomy tube inserted into his stomach for feeding, but it was later found not to be possible, due to Drew's severe kyphosis. His family were never happy with this proposal as they identified food as one of his few pleasures in life.

Nasogastric tubes are not a preferred long-term mode of feeding because of the risks involved. For Drew, they were often dislodged and management in the rural area where his lives was very difficult. The local hospital is unable to replace the tube so Drew needs to travel to the base hospital for replacernent of his nasogastric tube. There is no care coordinator available to advocate for Drew, develop a pathway to care which could bypass the emergency department (ED), or book regular appointments. Insertion requires a radiologist and having the correct tube available. This often means Drew is hospitalised for the weekend, and kept hydrated with an intravenous infusion while he waits for a replacement tube and the radiologist to be available.

More case studies of effective supports delivered by health services to people with intellectual disability

Harry, 45, lives in disability supported accommodation. He has intellectual disability, mental health concerns and needs communication support. Harry has an ingrown and infected toenail which will require a medical procedure. He is afraid of being in hospital with people he does not know, especially as his past visits to hospital were not pleasant experiences.

The staff at Harry's house are not sure about the health system and Harry's health needs. Harry does not have a regular GP but staff, after some effort, were able to get referrals to appropriate health specialists.

Eventually Harry receives a letter to attend a clinic.

The health staff in the clinic are unfamiliar with working with people with ID and their lack of confidence and communication skills unnerves Harry, who becornes anxious and wants to go home. In the confusion of the moment, there is no time for health staff to assess Harry's needs around communication support, mental health and ID support.

There is no opportunity for health staff to explore ways in which Harry's needs could be managed and security staff are called to contain the situation as Harry becomes more frightened and his behaviour escalates. Staff are unsure what to do, do not know where to access support and decide they are not skilled to care for people with ID.

Harry returns to his supported accommodation without being assessed. He refuses to consider attending the next clinic appointment.

The supported accommodation staff are reluctant to be involved with the next clinic appointment after this experience and all their efforts, which did not help in the end.

Harry's toenail becomes septic and he becomes very unwell. Accommodation staff call an ambulance and Harry is admitted to the local hospital's ED. He remembers his previous experience and becomes very anxious again. The staff remember Harry from his recent visit and avoid caring for hirn as they lack confidence in their skills.

Harry stays in hospital for six weeks while he receives treatment. This is much longer than expected.

Mary, 45, lives in disability supported accommodation. She has intellectual disability, rnental health concerns and needs communication support. Mary requires a medical procedure to meet her health needs. For Mary, this means using visual aids and social stories. Often an anaesthetic is required to ensure fear and anxiety do not prevent effective assessment and intervention. She is afraid of being in hospital with people she does not know, especially as her past visits to hospital were not pleasant exper ences.

The team leader at Mary's supported accommodation saw it as her role to make sure she had an understanding of the health system so she could advocate for Mary's health needs. It took months for Mary to understand she needed to see a GP to get referrals to appropriate health specialists for gynaecological and dental reviews.

Mary's regular GP and her accommodation team leader were able to identify a hospital that was able to support Mary and her specific needs. A pre-admission planning case conference was arranged at the hospital and accommodation staff prepared Mary for this using a social story book.

Her team leader brings along the NSW Health & Ageing and Disability and Home Care (ADHC) joint guideline (2013). The health staff are not familiar with the document, but with discussion, everyone decides to use it to work together. The meeting helps everyone to understand Mary's special needs around comrnunication support, mental health and ID support. The staff explore ways in which Mary's needs can be managed while she is an inpatient and put steps in place to do this, such as being there to support her and encourage her to drink after her surgery. Because Mary needs two procedures, the hospital staff suggest that Mary is booked to have both procedures at the same time, while under anaesthetic.

Mary is prepared as an inpatient the day prior to her procedures. Her support staff are given the likely time of medical rounds so they can see medical staff to ask any questions.

Everything went to plan, and Mary did not stay in hospital longer than expected. A comprehensive discharge summary is provided to her support staff and GP who provides routine follow-up care. Group home staff report no adverse impact on Mary's mental health after her hospital stay.

  • Guiding principle 5 - Health services are delivered in a person and family centred way
  • Relevant NSW Health policy- Responding to Needs of People with Disability during Hospitalisation
  • Enabling domain: Workforce - health staff are supported to make reasonable adjustments as needed
  • Health service delivery: Hospitalisation - preadmission visits/clinics are offered to people with ID and their support network prior to a planned hospital stay
  • Toolkit to support action -Say less show more; Hospitalisation toolkit

George's reported experience: 'I was able to go to hospital like everybody else'

IMAGES

  1. (PDF) A case study of Chiunda an intellectually disabled child at

    case study for intellectual disability

  2. Case Study Of A Child With Intellectual Disability

    case study for intellectual disability

  3. Intellectual Disability: Some International Aspects

    case study for intellectual disability

  4. Intellectual disability by dr sunil

    case study for intellectual disability

  5. (PDF) A Case Study on the Causes of Intellectual Disability

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  6. (PDF) People with Intellectual Disabilities and Employment

    case study for intellectual disability

VIDEO

  1. Understanding Intellectual Disability #mentaldisorders #dissociativedisorder

  2. Signs of Intellectual Disability #mentalhealthawareness #psychology

  3. Case Study: What is consciousness

COMMENTS

  1. Case Report: A Case of Intellectual Disability with Inappropriate and Challenging Sexual Behavior that was Treated with GNRH Analogues

    Introduction. Intellectual Disability is defined in DSM-5 as a conceptual, socially defective disorder that covers both intellectual and adaptive deficiencies and starts during the developmental stage. 1 Aggressive and challenging behaviors are frequently seen in these individuals with limited coping skills. 2 These behaviors, which are considered as the most important factors in applying to ...

  2. PDF Severe Intellectual Disability: A Case Study

    week from 8:15 am to 2:30 pm. The program offers skill building, physical and occupational. therapy, and pre-vocational training for individuals diagnosed with intellectual disabilities and. mental illness and who require moderate to high level of assistance. The environment.

  3. (PDF) A case study of Chiunda an intellectually disabled child at

    One of the objectives of the study which was administered was to establish the special needs or weak areas and strengths of Chiunda a 9 year old girl with mild intellectual disability (IQ 55). The ...

  4. Case 2: An 11-year-old girl with aggressive behaviour and intellectual

    The patient in the present case was genetically confirmed to have the full mutation (667 repeats of CGG), along with four of her brothers. FXS is the most common cause of inherited intellectual disability and is strongly associated with autism . It may present with features of pervasive developmental disorder including language delay ...

  5. PDF Intellectual and Developmental Disabilities

    accessible, accountable, and meaningful to the disability community. In this case study, adults with intellectual and developmental disabilities (IDD) contributed as co-researchers to a series of studies on mental health of adults with intellectual disability. The research model, specific engagement strategies, and lessons learned are shared.

  6. Experiences of shame and intellectual disabilities: Two case studies

    Pert C, Jahoda A, Stenfert Kroese B, et al. (2013) Cognitive behavioural therapy from the perspective of clients with mild intellectual disabilities: a qualitative investigation of process issues. Journal of Intellectual Disability Research 57(4): 359-369. DOI: 10.1111/j.1365-2788.2012.01546.x

  7. Adults with intellectual disabilities: Case studies using everyday

    A double-baseline case study design explored the use of everyday technology applications and devices to support functional performance of three men aged 32, 33, and 55 years, with mild to moderate intellectual disabilities. Performance of selected tasks was video-recorded and analysed on four occasions for each participant.

  8. Trauma experiences of people with an intellectual disability and their

    Of the 41 studies, 15 were quantitative studies, 12 were qualitative studies, six were mixed methods studies, and eight were case studies. 17 of the studies pertained to adults with a mild-to-moderate intellectual disability, seven studies pertained to adults with a moderate to severe intellectual disability, five studies pertained to adults ...

  9. Improving Care for the Intellectually Disabled

    Intellectual disabilities affect 1-3% of the U.S. population. The Executive Vice President and Chief Clinical Officer for Prisma Health discusses how health care redesign should factor in this population to reduce the health disparities they face. Authors: Jonathan Gleason, MD, and Namita Seth Mohta, MD Author Info & Affiliations.

  10. Case report: Adult male patient with severe intellectual disability

    All showed severe intellectual disability, delayed speech development and mild regression from the age of 5 years without, however, any dysmorphisms or congenital abnormality. ... a case-control study. PLoS One 2015; 10:e0119692. 10.1371/journal.pone.0119692 [PMC free article] [Google Scholar] 4. Stevenson J, Sonuga-Barke E, McCann D, et al.. ...

  11. The role of people with intellectual disability in intellectual

    Vicente and collegues (2019) established three separate panels comprising ten 'professionals' (paid-experts) six 'relatives' (unpaid-experts), and five people with intellectual disability. In this case the participation of people with intellectual disability was segregated, rather than modifying the study to facilitate full and equal ...

  12. Self-Care Skills of Children with Moderate Intellectual Disability

    A total of five sub­jects with moderate intellectual disability aged 7-12 years was selected for this study. The data were collected from eleven parents and teachers by interview. All data were ...

  13. Full article: Following children with severe or profound intellectual

    The case-study framework consisted of multiple repeated measures in three phases (an AB design (Byiers et al. Citation 2012) with an added follow up phase): (1) ... She had profound intellectual disability as well as a cerebral palsy that severely limited her motor abilities. Hanna was dependent on a wheelchair to ambulate in most instances but ...

  14. Case Study on Intellectual Disability

    Westwood, P. (2011) Commonsense Methods for Children with Special Educational Needs. London, Taylor & Francis. This case study, "Case Study of a Child with Intellectual Disability" is published exclusively on IvyPanda's free essay examples database. You can use it for research and reference purposes to write your own paper.

  15. Crime and victimisation in people with intellectual disability: a case

    Background Studies have suggested that people with intellectual disability are disproportionately involved in crime both as perpetrators and victims. Method A case linkage design used three Australian contact-level databases, from disability services, public mental health services and police records. Rates of contact, and official records of victimisation and criminal charges were compared to ...

  16. Case Study: Accommodating Students with Intellectual Disabilities

    Running Head: CASE STUDY 1 Case Study: Accommodating Students with Intellectual Disabilities Spencer Anderson, Steve Cook, Elizabeth Doney and Amal Jabali Athabasca University March 10, 2019 CASE STUDY 2 Introduction: Case Study Introduction Students with intellectual needs have problems with their cognitive capability and usually lack skills in social behavior and self-care (Jones & Goble, 2012).

  17. PDF Case Study: Adult with Intellectual Disability: Otalgia

    6 hours for pain, Levothyroxin 50mcg PO daily. The task in this case is to assess the EENT status of a 45 year old individual with an intellectual disability using history-taking with patient. 18. Setting of Encounter: Primary Care Office SP: Seated on the exam room fully clothed.

  18. Access to seventh grade mathematics: A case study of two students with

    In the United States, students with mild intellectual disability ... In this qualitative case study, the researchers describe the teaching methods of a seventh grade, special education teacher who heavily emphasized visuals, such as diagrams and gestures, in her instructional approach. In her classroom, two students with MID demonstrated the ...

  19. Students with Intellectual Disability in Special Needs School: A

    This qualitative descriptive study aims to describe the situation of students with intellectual disabilities in a special needs school. Data was collected through semi-structured interviews with 8 ...

  20. Intellectual Disability, A case Study to understand Their needs

    Intellectual Disability (ID) is a neurodevelopmental disorder characterized by deficits in cognitive functioning and adaptive behaviours. According to the DSM-5-TR, there are three core symptoms ...

  21. PDF Ethical Issues in Social Work: Adults with Intellectual Disabilities

    Ethical conflict may occur when laws and policies permit the physical restraint of a client with an intellectual disability even though this restraint use is contradictory to the official position held by social work organizations and the personally held beliefs of the social worker. For example, holding grips may be used by care staff to ...

  22. (PDF) Bronfenbrenner's theory and teaching intervention: The case of

    The purpose of the present study through the case study of a student with intellectual disabilities is to implement and evaluate the pedagogical tool, TISIPfSENs, in the secondary school microsystem.

  23. Case studies

    More case studies of effective supports delivered by health services to people with intellectual disability. Harry's story of unmet needs. Harry, 45, lives in disability supported accommodation. He has intellectual disability, mental health concerns and needs communication support. Harry has an ingrown and infected toenail which will require a ...