Journal of Intellectual Disability - Diagnosis and Treatment

156-163

Authors: Khaled Alkherainej, Jane Squires

An efficient approach for screening and identifying children at risk for autism spectrum disorder (ASD) remains a pressing need. The aim of this exploratory study was to examine the ability of two general developmental screening tests to identify children at risk for ASD. We compared the accuracy of one general developmental screening instrument, Ages and Stages Questionnaires (ASQ), and one general social emotional screening instrument, the Ages and Stages Questionnaire: Social Emotional (ASQ:SE), with the Social Communication Questionnaire (SCQ), an ASD-specific screening instrument. Two hundred eight children between 36 and 66 months were recruited through 19 community ASD programs, websites, and magazines. The three screening instruments were given to 285 parent/child dyads with and without a diagnosis of ASD, online via a screening website linked to a university. Sixty-four children had been diagnosed with ASD and were receiving special education services (e.g., behavioral interventions) prior to their participation. The classification agreement of the ASQ (i.e., sensitivity = 84.38%, specificity = 81.45%) outperformed the other two screening instruments; classification agreement of the SCQ was sensitivity = 70.31% and specificity = 87.33%; and of the ASQ: SE, sensitivity = 82.81% and specificity = 72.40%. Agreement among the questionnaires ranged from moderate to strong as measured by Pearson Product Moment Correlation Coefficients. Children diagnosed with ASD had scores below the screening cutoff points, indicating risk, most often on three ASQ domains: (a) communication, (b) gross motor, and (c) personal social. This exploratory study indicated the feasibility of using the ASQ in screening clinics for finding children at risk for ASD, if the ASQ is followed by specific ASD assessments. Design limitations, including a sample of children with ASD already receiving intervention services may explain the somewhat lower sensitivity of the SCQ.

177-186

Authors: Marisa Macy, Diane Bricker, Carmen Dionne, Jennifer Grisham Brown, JoAnn Johnson, Kris Slentz, Misti Waddell, Melissa Behm, Heather Shrestha

Early childhood assessment practices, procedures, and tools can lay the foundation for an effective intervention program. The purpose of this article is to report the results of a content validity study conducted on a revision of Assessment, Evaluation, and Programming System for infants and children (AEPS®) Test, a widely used early childhood assessment/evaluation instrument. A panel of early childhood and early childhood special educator experts was assembled and asked to provide qualitative feedback on the content of the revised AEPS Test. Experts were asked to address five specific questions about item content, developmental sequences, and if assessment items represented quality teaching targets for young children. Qualitative results were used to modify items, developmental sequences, and area content.

198-204

Authors: Elizabeth A. Steed A. Steed, Rashida Banerjee

This paper discusses the issues and challenges to the assessment and early identification of social emotional and behavioral issues in young children birth through five years of age in the United States. The linked system framework of social emotional assessment and intervention [1] is outlined, and recommendations for authentic assessment of social emotional development are provided to assist professionals in identifying young children early for amelioration and prevention of behavioral challenges.

213-217

Authors: Toshihiro Horiguchi, Chieko Akiyama

To determine the average medical cost incurred for early identification of intellectual and developmental disabilities in children, we retrieved the records of 264 children who had visited our consulting unit from 2005 until the end of March 2012. In the evaluation process, each child took psychological assessments and the parents were provided with solutions to enable the children to overcome their delay in school. As a whole, while the average number of visits did not differ by the diagnosis, the average medical cost differed by the diagnosis. The consultation unit was effective for gradually diminishing the medical costs incurred. Our in-clinic consultation system proved useful for early identification of intellectual and developmental disabilities in children and minimization of the medical costs incurred for the process.

230-237

Authors: Nils Haglund, SvenOlof Dahlgren, Karin Källén, Peik Gustafsson, Maria Råstam

Background:There is an increasing body of evidence that early interventions for children with Autism Spectrum Disorder (ASD) promote a positive development of social interaction. Thus, tools for early detection of ASD are warranted. Aim: Development of, and deciding cut-off-levels for, a new screening tool for ASD, the Observation Scale for Autism (OSA). The OSA was designed to be used at the free health check-up at 30 months, offered to all children in Sweden. Method: The OSA consists of 12 observations and takes less than 10 minutes to use. The performance of the test was investigated by assessing 37 children previously diagnosed ASD, 23 with Down Syndrome (DS) and 26 typically developing children (TD). Results:Children diagnosed with ASD showed statistically significant higher scores in all 12 items compared to TD children, and significantly higher in 10 items compared to the children with DS. Most of the observations in OSA seemed to cover specific symptoms of ASD, but two of the observations were more related to developmental level. The nine most discriminative items for ASD were identified, and among those, a cut-off limit was chosen (≥3 items). Among children with ASD, 34/37 reached the proposed cut off, compared to 0/26 and 4/23 among children in the TD and DS groups, respectively. Conclusion:The results suggest that the OSA discriminates children with ASD from TD children and children with DS. Using the suggested cut off, OSA provides high sensitivity for ASD (92%) with a very low false positive rate.

247-256

Authors: Joannie Busillo-Aguayo, Wendy Murawski, Ivor Weiner

Currently more than 15% of children have an emotional, behavioral, or developmental concern. In spite of recommendations by the American Academy of Pediatrics and the Centers for Disease Control and Prevention to conduct universal developmental surveillance and screening with children at 9, 18, and 24 months of age, fewer than 30% of children under 6 years of age ever receive a developmental screening. Children in low-income and diverse communities are even less likely to be screened by a medical provider and/or referred for further diagnostic evaluation when predictive concerns are identified. As part of a cross-agency collaborative effort involving a family resource center, a child care resource and referral agency, a regional center for developmental disabilities, and a master's degree program in early childhood education, the Mobile Developmental Screening Van Project conducted outreach to provide free developmental screening with families of children 0-8 years of age in diverse and low-income communities within the greater Los Angeles County. Using the Parent Evaluation of Developmental Status (PEDS) screening tool, 94 children were screened over the course of 6 months, with 33% showing 2 or more predictive concerns that resulted in referrals for further diagnostic evaluation. The feasibility of reaching families in hard to reach communities using a mobile screening van, as well as study limitations and recommendations for next steps, are discussed.

120-125

Authors: Mary Kay Jones, Lori Lauver

Autism is a severe developmental disorder that affects a child's communication, social, and repetitive behaviors. Typically a child will be diagnosed with autism around the age of three. Identifying an autistic child younger than three can be performed at the child's well visits, through the evaluation of the child's developmental milestones. Multiple screening tools have been developed and used to facilitate the identification of developmental milestones. Currently these tools used are for children aged 18 months and older. There is a need to identify a screening tool or tools to be used for infants, (i.e., under 18 months of age) who fail to achieve developmental milestones. The goal of this evidentiary review is to explore the screening tools for infants between the ages of 9 and 18 months.c

138-146

Authors: Marco O. Bertelli Marco O. Bertelli, Michele Rossi Michele Rossi, Daniela Scuticchio Daniela Scuticchio, Annamaria Bianco Annamaria Bianco, Luana Salerno Luana Salerno

Intellectual Disability (ID) represents a meta-syndromic group of several different conditions, each one with specific cognitive and communication features. This constitutes one the main reason for which the diagnosis of psychiatric disorders in adults with ID is challenging. The aim of this paper is to provide a comprehensive and updated state of art on the assessment of psychiatric disorders in people with ID. In order to accomplish this goal, authors performed a systematic literature mapping trying to answer to the following questions: what are the issues in the psychiatric diagnostic process for adults with ID? What methods and procedures have been used for psychiatric assessment in ID? To date, is it possible to identify the most effective diagnostic procedures? Results indicated that the main critical issues in the psychiatric diagnostic process were the following: the identification of psychiatric symptoms, the behavioural equivalents, the diagnostic criteria, the setting, the source of information, the screening and diagnostic instruments. An increasing interest in screening instruments for providing appropriate diagnosis for people with ID has been noted in the recent years. For this reason, available assessment tools have been briefly indicated, with their strengths and weaknesses. Although the recent advances, more research is needed in order to increase diagnostic accuracy in this heterogeneous group of patients.

51-62

Authors: Ana Teresa Martins, Isa Carneiro, Sara Monteiro-Reis, João Lobo, Ana Luís, Carmen Carmen Jerónimo, Rui Henrique

In the context of translational cancer research, biobanks are key infrastructures that provide high quality biological samples, coupled with relevant clinical and pathological information. This role can only be successfully accomplished through the implementation of standardized procedures that ensure proper collection, handling, processing, storage and recording of tissue samples, following strict legal and ethical regulations. Biobank networking is fundamental for dissemination of good practices and to help in the establishment of new infrastructures that improve the assessment of heterogeneity among tumor types and across patient cohorts. Growing demands for large number of homogenously preserved tumor tissue samples can only be met through a more intense cooperation among biobanks, facilitated by networks that foster cooperation at international level. The potential of biobanks as fundamental tools for translational cancer research can only be achieved through a concerted effort from biobankers, researchers, legislators and tissue donors that may allow for improved sample exchange.

70-75

Authors: Carlos Moedas

Supporting health research has been a long-standing commitment for the European Union (EU). Over several Framework Programmes for Research and Innovation, the EU contributed to advancing scientific knowledge on intellectual disability and addressing the unmet needs of affected people, their families and carers. Bio-banking is instrumental to such research. This article presents the various streams through which the EU has helped developments in this area and highlights opportunities for the future.

82-86

Authors: Rivka Green, Jennifer Kalina, Krupa Pandey

Objective: To investigate the (1) incidence of anxiety and (2) association of anxiety with disease duration, depression, and age in an outpatient Multiple Sclerosis (MS) Center. Background: The incidence of anxiety varies in the literature but is estimated to affect 44.5% of people with MS. Anxiety can be a predictor of poor Quality of Life, especially relevant in progressive illnesses, such as MS. Though research has shown that patients newly diagnosed experience higher anxiety levels, the relationship between anxiety and disease duration is unclear. Since anxiety can be comorbid with depression in MS populations, it is relevant to establish its association in this setting. Finally, though anxiety usually increases in older age, research for this relationship in MS populations is inconclusive. Design/Methods: The commonly used Hospital Anxiety and Depression Scale, was distributed once to patients with MS over a 3 month period to assess anxiety and depression scores. MS disease duration and age were confirmed by neurologists. Results: Out of 160 patients with MS who completed the HADS, 19% reported abnormal anxiety, 14% reported borderline cases of anxiety, and 67% did not report anxiety. After following up on significant correlations, depression and younger age were related to higher anxiety levels, (R2=.35, F(4,144)=19.26, p<0.001). The standardized partial regression coefficients indicated 2 statistically significant predictors, depression (β=.55, p=<.001) and age (β=-.25, p=<.001). Discussion: 33% of patients reported symptoms of anxiety, emphasizing the need to focus on treating anxiety, specifically, early in their disease course. Clinicians may also want to recognize that elevated depression scores predicted anxiety. Lastly, in our cohort, the younger population reported higher anxiety, demonstrating that progressive illnesses may affect anxiety levels in younger populations more. Since approximately one third of patients with MS expressed anxiety symptoms, it is important to incorporate this into treatment plans

91-96

Authors: Nachum Vaisman, Rachel Regev, Lior Katalan, Yael Duani

The prevalence of obesity is reported to be higher among people with intellectual disabilities compared to the general population. Factors which were suggested to contribute to this increased prevalence include: low adherence to healthy diets, poor level of physical activity, intellectual disabilities and the lack of residential settings supporting independence. This study was designed to evaluate the additive effect of an intervention in the form of cognitive behavioral treatment (CBT) in a multi-strategy weight loss program for young adults with severe learning disabilities living in group residences in the community. The study population included 28 subjects (12 males) who were randomly assigned to one of two groups. Both groups had a weekly meeting with a dietician and were invited to take part in walking groups. One group (intervention group) had on top a weekly session of CBT. The results of our study indicate that adding a CBT component to a conventional program aiming at improved nutritional understanding (prudent diet, physical activity) of subjects with LD may improve the success for change in life habits, yet, in our study this effect was noticeable only on follow up few months after study termination. Neither group differences at baseline nor differences in the scoring for the locus of control questionnaire at baseline could predict this outcome. This delayed impact warrants further investigation.

110-119

Authors: Pamela Inglis, Hazel Powell, Angela Ridley, Sheila McQueen

Aims: A discussion of the treatment of people with an intellectual disability across healthcare and the modernisation of learning disability nursing. Background: Health inequalities are at the forefront of the collective mind of healthcare professionals and politicians, this paper explores why people with an intellectual disability have more health issues, die earlier and sometimes receive poor care, leading to unnecessary suffering and importantly, how this may change. Learning disability nursing has long been viewed as different and less valued, probably due to dual stigmatisation, or lack of understanding of specialist knowledge and skills required. This essential field of nursing is becoming a rare resource in our battle against health inequalities, yet internationally it is becoming recognised as crucial. Design:Discussion Paper. Data Sources:Literature and policy (1971 – 2012). Implications for Nursing:All nurses need to recognise their role in meeting the health care needs of people with an intellectual disability. Health care managers and commissioners should value the unique contribution of learning disability nurse in addressing health inequalities. Conclusion:Learning disabled people, their carers and professionals view the role of the learning disability nurse as central for effectively identifying and meeting health needs, reducing inequalities and barriers, supporting decisions around capacity, consent, best interests and advising and educating professionals. Recommendations for commissioning, nursing and services are made. Summary Statement: Why is this discussion paper needed? People with an intellectual disability have shorter life-spans and receive poor healthcare because of the barriers to good health developed in societies constructed by and for people without a disability. Internationally, the need for learning disability nurses, with their specific knowledge and skills, is being recognised in the battle against early and unnecessary deaths because of discrimination and health inequalities. Learning disability nurses and ‘Strengthening the Commitment’ lead on improving healthcare for learning disabled people and this paper raises the profile of this important health issue. What are the key findings? This discussion paper explores how most of the poor health experienced by people with an intellectual disability is about discriminating healthcare provision and crucially, not because the person has a disability. People with an intellectual disability have greater health needs than others and despite this, nonspecific health professionals often have scant understanding of their disability and health needs. Learning disability nursing as a vital resource has in recent years seen posts reducing in the NHS, with actual and commissioned numbers of registered learning disability nurses dropping. How should the findings be used to influence policy/practice/education/research? People with an intellectual disability and nonspecific staff often feel they are inadequately educated and lack appropriate skills for quality healthcare provision for learning disabled people; this has to change. Sir Johnathon Michael (2008) recommendation 1 advises that all health professionals be competent in supporting learning disabled people in a non-discriminatory way - universities and employers urgently need to adhere to this recommendation. Professionals, learning disabled people and carers state learning disability nurses are vital to acquiring human rights - increased international commissioning for learning disability nurses to enable quality healthcare, education and advice to professionals is pressing.

1-6

Authors: Edward A. Polloway, J. David Smith, James R. Patton

Throughout civilization, the power of the word has significantly influenced and shaped societies. The contributions of writers has been substantial and this is certainly true in the field of intellectual disability. The renowned author, Charles Dickens, spoke of the need for appropriate education and treatment for people with these disabilities. He is notable for his early and prophetic vision of their potential for growth. This paper reviews important examples that were included in his novels as well as in other writings on people with intellectual disabilities. The manuscript places his work in an historical perspective, highlights his contributions to the literature of disability advocacy, and references his relevance to the field of intellectual disability.

13-20

Authors: Colleen Wood-Fields, Sharon Judge, Silvana M.R. Watson

Educational legislation has made reading a priority for students with significant intellectual disabilities (ID) and associated speech, language, sensory, or physical impairments. Historically, reading instruction for students with significant ID has focused on sight word instruction, with limited exposure to other essential reading skills. This article focuses on the evidence-based instructional methods that effectively and efficiently foster the reading development of students with significant ID. The authors reviewed the literature from the past 20 years on reading interventions for students with significant ID. In spite of access and opportunity barriers that have inhibited the reading development of students with significant ID, a synthesis of the empirical research on reading instruction suggests that students with significant ID and associated disabilities can learn phonemic awareness, phonics, vocabulary, fluency, and comprehension skills with direct instruction. Implications for providing reading instruction that effectively promotes reading development are discussed and areas for future research are identified.

35-42

Authors: Guadalupe Elizabeth Morales-Martinez, Ernesto Octavio Lopez-Ramirez, Maria Guadalupe Villarreal-Treviño, Yanko Norberto Mezquita-Hoyos

Persons with intellectual disability (PWID) have fewer opportunities for enrolment in school programs and post-school employment than do their peers with typical development. Evidence suggests that attitude toward PWID is a main factor in either promoting or limiting better life conditions for this population. In this paper, the goal was to determine the cognitive information integration rules underlying the expectations of 174 special education teachers and students with regard to job training for PWID. In order to accomplish this goal, four factors (Gender, Severity of disability, Type of task, and Emotional traits) were orthogonally combined to implement a cognitive algebra study design. We obtained 48 experimental conditions, with each one presented as a scenario describing a PWID in a work training situation. Participants read these scenarios and were asked to judge the probability of the success of PWID with regard to learning the skills needed to complete the required work. Patterns of response allowed us to identify low, moderate, and high viewpoints with regard to participants' judgments of predicted success. Personal factors (Emotional traits and Severity of disability) and the Type of task factor were considered the most important in influencing the participants' judgment. These factors seemed to be integrated in a complex systematic cognitive pattern. Implications from this type of result with regard to PWID and work training are discussed in this paper.