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Background: As individuals with intellectual and developmental disabilities (IDD) grow older, siblings are likely to become caregivers for their brothers and sisters with IDD. Thus, it is important to identify the correlates of sibling caregiving to facilitate transitions to caregiving roles. Method: This study involved the secondary analysis of a national data set of 429 adult siblings of individuals with IDD. Results: Current sibling caregiving was positively correlated with sibling relationship quality, sibling advocacy and future planning, maladaptive behaviours of individuals with IDD, and family size. Current sibling caregiving was negatively correlated with parent caregiving abilities and functional abilities of individuals with IDD. Further, among siblings who provided care, the level and nature of sibling caregiving were negatively correlated with parent caregiving abilities. Conclusions: The results identify the correlates of current caregiving among siblings of individuals with IDD. More research is needed to understand current sibling caregiving. [ABSTRACT FROM AUTHOR]

People with disabilities living in rural and remote areas often have insufficient access to the allied health services that they require. Telepractice has emerged as a promising solution, yet little is known about whether it is possible to deliver quality disability therapy services via technology or of the considerations required to achieve positive outcomes. Multiple case studies using mixed methods were conducted to achieve in-depth examination of the telepractice services received by four children with disabilities and their families living in rural and remote Australia. Data analysis indicated that telepractice services were highly acceptable to parents and teachers and supported children to achieve positive outcomes for a variety of functional goals related to speech-language pathology and occupational therapy. Findings indicated that quality telepractice can deliver services consistent with contemporary disability expectations. Of critical importance were the skills of allied health professionals to facilitate person-centred practice and strong therapeutic relationships with children, parents, and other stakeholders to achieve positive outcomes for children. Our findings indicate that telepractice is a legitimate option for therapy service delivery that has the potential to provide people with disabilities increased choice and control over the services they receive. [ABSTRACT FROM AUTHOR]

Neurodevelopmental disorders, including autism spectrum disorder, are common in children and adolescents, but treatment strategies remain limited. Although repetitive transcranial magnetic stimulation has been studied for neurodevelopmental disorders, there is no clear consensus on its therapeutic effects. This systematic review examined literature on repetitive transcranial magnetic stimulation for children and adolescents with neurodevelopmental disorders published up to 2018 using the PubMed database. The search identified 264 articles and 14 articles met eligibility criteria. Twelve of these studies used conventional repetitive transcranial magnetic stimulation and two studies used theta burst stimulation. No severe adverse effects were reported in these studies. In patients with autism spectrum disorder, low-frequency repetitive transcranial magnetic stimulation and intermittent theta burst stimulation applied to the dorsolateral prefrontal cortex may have therapeutic effects on social functioning and repetitive behaviors. In patients with attention deficit/hyperactivity disorder, low-frequency repetitive transcranial magnetic stimulation applied to the left dorsolateral prefrontal cortex and high-frequency repetitive transcranial magnetic stimulation applied to the right dorsolateral prefrontal cortex may target inattention, hyperactivity, and impulsivity. In patients with tic disorders, low-frequency repetitive transcranial magnetic stimulation applied to the bilateral supplementary motor area improved tic symptom severity. This systematic review suggests that repetitive transcranial magnetic stimulation may be a promising intervention for children and adolescents with neurodevelopmental disorders. The results warrant further large randomized controlled trials of repetitive transcranial magnetic stimulation in children with neurodevelopmental disorders. [ABSTRACT FROM AUTHOR]

Prior research has examined interventions to prevent prompt dependence from occurring during the training of novel skills. Nevertheless, the relative efficacy and efficiency of different intervention procedures may be idiosyncratic across learners, suggesting the potential benefit of an individualized assessment. The purpose of the current study was to extend the literature on prompt dependence by comparing interventions for 3 participants with developmental disabilities who consistently engaged in correct responses following prompts but did not perform tasks independently. We compared the efficacy and efficiency of 3 interventions including differential reinforcement, prompt fading, and extended response interval. Intervention results differed across participants, indicating that the most efficacious and efficient intervention for prompt dependence should be individualized via assessment. [ABSTRACT FROM AUTHOR]

Background: Research shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long‐term care planning. Methods: The study team conducted interviews with parents and siblings of adults with IDD and performed qualitative coding using a modified grounded theory to explore domains of future planning and identify barriers and facilitators. Results: Themes from the interviews revealed seven major domains of future planning that should be considered by caregivers of adults with IDD. These domains are housing, legal planning, identification of primary caregiver(s), financial planning, day‐to‐day care, medical management and transportation. Approaches to planning within each domain varied greatly. Conclusions: The study team dentified the domain of "identification of primary caregiver(s)" as potentially the most important step for caregivers when planning for the future, but also observed that the domains identified are significantly interrelated and should be considered together. [ABSTRACT FROM AUTHOR]

People with intellectual and developmental disabilities (IDD) often find themselves excluded from community participation due to environmental barriers, especially stigma. These barriers can negatively affect their psychological well‐being and quality of life. Life‐coaching as a short‐term and action‐prone process can increase goal attainment in various life‐domains and lead to enhanced quality of life. Nevertheless, to date, few life‐coaching interventions have targeted individuals with IDD. This case study article aimed to demonstrate the feasibility of a conceptual framework for practicing life‐coaching with individuals with IDD, by describing two cases of individuals with IDD who participated in a life‐coaching intervention. Life‐coaching, based on the proposed framework, can be a potential intervention to enhance the capability set, self‐determination skills, and overall quality of life of people with IDD. It appears that in order for the life‐coaching process to successfully address psychosocial aspects of the quality of life concept among people with IDD, it must be tailored to their needs and competences. [ABSTRACT FROM AUTHOR]

Oxidative stress is understood to be involved in the ontology and maintenance of different developmental disabilities. Some complementary and alternative medicine (CAM) therapies have been proposed to modify this relationship by affecting oxidative stress pathways. However, it is unclear which of these CAM therapies are used among children with different developmental disabilities. This study examines the use of these therapies among 10,218 children between the ages of 4 and 17 using the 2012 Child Complementary and Alternative Medicine (CAM) Supplement of the National Health Interview Survey (NHIS) to highlight a potential avenue for intervention and prevention efforts. The results suggest that children with developmental disabilities are more likely to utilize particular CAM therapies that may alter oxidative stress pathways. Future work is needed to assess the potential moderating effect of these CAM therapies and oxidative stress levels among children with different developmental disabilities. [ABSTRACT FROM AUTHOR]

The Motor and Vocal Imitation Assessment (MVIA) was developed to evaluate a proposed hierarchy of imitation skills that could be used to formulate an experimentally-validated instructional guide for intervention. Imitation performance was assessed via the MVIA in 30 typically developing (TD) children and 30 children with Autism Spectrum Disorder (ASD). Children with ASD and TD demonstrated similar patterns of imitation. Children had higher performance scores in object imitation, followed by body, then vocal, and lastly facial imitation. The results revealed a pattern of imitation performance that provides the basis for an experimentally-validated instructional guide for intervention. [ABSTRACT FROM AUTHOR]

Individuals with autism spectrum disorder (ASD) have higher rates of co-occurring diagnoses and use of psychotropic medication prescriptions than people with other developmental disabilities. Few studies have examined these trends in samples of people with intellectual and developmental disabilities (IDD) with and without ASD. Using a random sample of 11,947 adult IDD service users from 25 states, co-occurring diagnoses and psychotropic medication use were compared for those with and without ASD. Regardless of diagnosis, individuals with ASD had higher percentages of psychotropic medication use. Controlling for co-occurring condition, age, gender, and ID level, a diagnosis of ASD predicted number of medications used. Further research is needed to understand why individuals with ASD are prescribed more medication, more often, than similarly functioning groups of individuals without ASD. [ABSTRACT FROM AUTHOR]

Objectives: Positive Behavioral Support (PBS) is considered the treatment framework of choice for children with intellectual and developmental disabilities (IDD) at risk of behavior that challenges. PBS demands stakeholder engagement, yet little research has explored goal formation in this context for caregivers of children with IDD. Methods: We used Talking Mats and semi-structured interviews to support 12 caregivers of children with IDD who displayed behaviours that challenge, to develop goals for PBS. Interviews covered quality of life for caregivers and their child, adaptive and challenging aspects of child behavior, and aspects of caregiver's own behavior. Results: Caregivers were able to form individualised and meaningful goals in relation to all domains, demonstrating rich insight into personal needs and needs of their child. The process of forming goals was psychologically and emotionally complex given prior experiences and needs of participants but effectively supported by the interview method. Conclusions: We conclude that goal formation in PBS requires careful consideration and structuring but has the potential to support effective working relationships and ensure assessment and intervention is aligned with the needs and aspirations of families. [ABSTRACT FROM AUTHOR]

Objectives: This study aims to investigate the impact of a therapeutic horse riding (HR) intervention and an audiovisual (AV) intervention comprising exposure to equine rhythm and motion on developmental parameters of children with Developmental Coordination Disorder (DCD). Design: The study design was a pretest/post-test. Settings/Location: The study took place in three locations across Ireland—St. Michael's Boys School in Mervue, Co Galway, The Hunt Museum in Limerick City, Co. Limerick, and Fettercairn Youth Horse Project in Tallaght, Co. Dublin. Subjects: Eighty-three children (6–14 years) with a primary diagnosis of DCD. Interventions: Children meeting the inclusion criteria were divided into three groups: HR, AV, and a control (C) group. Those in the intervention groups participated in eight 30 min HR lessons or AV screening sessions. Outcome measures: A Childhood Depression Inventory (CDI) measured signs of depression. A Childhood Behavior CheckList (CBCL) determined any behavioral and emotional problems, while a Social Responsiveness Scale (SRS) assessed the presence and extent of any social impairment. A GAITRite system provided an overall Functional Ambulation Performance (FAP) score (an automatic accumulated score of gait parameters, including gait speed, symmetry, distance, cadence, tension, support, and velocity), which was used to evaluate gait improvements. Results: Repeated measures analysis of variance revealed a main effect of time on all variables. Bonferroni post hoc tests revealed that these effects were due to significant improvements in both HR and AV groups for CDI, CBCL, and SRS, and significant improvements in the HR group only for FAP. Conclusions: This study provides initial evidence to support the value of an equine AV perception intervention at improving developmental parameters in children with DCD and provides additional support for the benefits of therapeutic HR on social, emotional, behavioral, and gait variables in these children. [ABSTRACT FROM AUTHOR]

Background: During grammatical treatment of children with developmental language disorder (DLD), it is natural for therapists to focus on the grammatical details of the target language that give the children special difficulty. However, along with the language‐specific features of the target (e.g., for English, add –s to verbs in present tense, third‐person singular contexts), there are overarching factors that operate to render the children's learning task more, or less, challenging, depending on the particular target. Aims: To identify five such factors that can play a role in the grammatical learning of children with DLD. We use English as our example language and provide supporting evidence from a variety of other languages. Main Contribution: We show that the relative degree of English‐speaking children's difficulty with particular grammatical details can be affected by the extent to which these details involve: (1) bare stems; (2) opportunities for grammatical case confusion; (3) prosodic challenges; (4) grammatical and lexical aspect; and (5) deviations from canonical word order. Conclusions: During treatment, therapists will want to consider not only the English‐specific features of grammatical targets but also how these more general factors can be taken into account to increase the children's success. [ABSTRACT FROM AUTHOR]

Background: Considering the growing body of studies investigating the effects of mindfulness‐based interventions on caregivers supporting people with developmental disabilities, the current study aimed to explore the role that the cognitive processes of mindfulness, coping style and resilience played in predicting caregiver retention and burnout among a sample of direct support professionals working with aggressive adults with developmental disabilities. Methods: Ninety‐seven direct support professionals were surveyed to determine level of mindfulness, coping styles, resilience and burnout and were interviewed 3 months later to determine if they were still working with the aggressive adult. Results: Mindfulness skills of describing non‐judgmentally and observing one's environment, as well as problem‐focused coping, emerged as protective factors against burnout, while avoidance‐focused and maladaptive coping emerged as risk factors. Mindful openness acted as the only predictor of job retention. Conclusions: These results support that paid caregivers should receive trainings in mindfulness and positive coping mechanisms as part of their job trainings, to promote positive outcomes for both themselves and the people they support. [ABSTRACT FROM AUTHOR]

Background: Little is known about the sociodemographic and clinical characteristics of adverse drug events (ADEs) in patients with neurodevelopmental disorders (NDD). Objective: The objective of this study was to describe and compare the demographic details of people with and without NDD hospitalised due to ADEs. Methods: The all‐inclusive New South Wales Admitted Patient Data Collection from 2001 to 2014 was employed to identify ADE‐related hospitalisations in patients with NDD using the International Classification of Diseases 10th revision Australian modification codes. We derived case sets specific to different clinical groups and patient characteristics and compared proportional differences between patients with and without intellectual disability using chi squared tests. Results: A total of 2173 patients with NDD were admitted for acute care of ADEs, accounting for 0.7% of all ADE‐related hospitalisations. Hospitalised ADEs among patients with NDD increased by twofold over the 14‐year study period. Psychotropic medications and opioid analgesic medications were leading causes of ADE‐related hospitalisations in patients with NDD. Compared with their counterparts, patients with NDD were younger, experienced more socio‐economic disadvantage and less private insurance coverage, suffered with less severe but different co‐morbid clinical conditions and incurred more challenges in the acute hospital care setting. Conclusion: Although the pattern of ADE‐related hospitalisations in patients with NDD differed from that in patients without NDD, there is a lack of targeted healthcare programmes to meet their special needs. This study suggests the need for countermeasures in primary healthcare settings to reduce the burden of ADEs in this vulnerable group. [ABSTRACT FROM AUTHOR]

Importance: Health care providers' knowledge of and comfort working with adults with developmental disabilities (DD) affect the quality of care this growing population receives. Previous research on this topic has not included occupational therapy practitioners. Objective: To determine occupational therapy practitioners' views about working with older adults with DD in traditional health care settings. Design: Quantitative survey over 4 mo. Participants: A random sample of 310 practitioners from the American Occupational Therapy Association's Gerontology and Physical Disabilities Special Interest Sections working in traditional health care settings. Outcomes and Measures: A researcher-developed survey to assess occupational therapy practitioners' comfort, knowledge, challenge, and supports and barriers in regard to working with older adults with DD. Results: In the 310 included surveys (31% response rate), most occupational therapy practitioners reported feeling comfortable (76.1%-80.0%) and knowledgeable (66.5%-68.4%) working with older adults with DD. Approximately 93% reported that work with older adults with DD was at least somewhat challenging. Key perceived barriers included clients' cognitive needs, lack of caregiver collaboration, and challenging behavior. Conclusion and Relevance: Most occupational therapy practitioners in traditional health care settings found working with older adults with DD challenging, and many did not feel sufficiently knowledgeable to meet the needs of this population. Similar to other health professionals, occupational therapy practitioners may benefit from additional resources to provide services to this population. What This Article Adds: Older adults with DD receive occupational therapy services in hospitals, rehabilitation centers, nursing homes, and other medical settings. Because clients such as these are not common in these settings, occupational therapy practitioners who work there would like more tools to help provide good care. [ABSTRACT FROM AUTHOR]

Pediatric health care providers are frequently responsible for prescribing physical, occupational, and speech therapies and monitoring therapeutic progress for children with temporary or permanent disabilities in their practices. This clinical report will provide pediatricians and other pediatric health care providers with information about how best to manage the therapeutic needs of their patients in the medical home by reviewing the International Classification of Functioning, Disability and Health; describing the general goals of habilitative and rehabilitative therapies; delineating the types, locations, and benefits of therapy services; and detailing how to write a therapy prescription and include therapists in the medical home neighborhood. [ABSTRACT FROM AUTHOR]

The aim of this systematic review and meta‐analysis was to examine the effectiveness of Stepping Stones Triple P (SSTP) parent training programs on child behavior problems and parenting outcomes in families of children with developmental disabilities. Sixteen suitable studies including data from over 900 families were identified in a search for English language published and unpublished controlled outcome studies. SSTP has five levels on a graded continuum of increasing intensity targeting families with differing degrees of treatment need from low intensity media‐based parenting information campaigns at level 1, through brief interventions at levels 2 and 3, to more intensive parent training and family therapy interventions at levels 4 and 5. Analyses were conducted on the combination of all levels of SSTP and separately for each level. For combined levels, significant overall effect sizes were found for parent‐reported child problems (d = 0.46), researcher observed child behavior (d = 0.51), parenting style (d = 0.70), parenting satisfaction/self‐efficacy (d = 0.44), parental adjustment (d = 0.27), and coparental relationship (d = 0.26), but not researcher‐observed parent behavior. Strong support was found for level 4 SSTP as an effective intervention for improving child and parent outcomes in families of children with disabilities who have clinically significant problems. Less intensive SSTP interventions for cases with circumscribed difficulties yielded fewer significant treatment effects, and there were relatively few studies of such interventions. [ABSTRACT FROM AUTHOR]

Parents' understanding/expectations regarding genetic testing for children with developmental disorders were explored. Within a month of testing, interviews were conducted with 57 parents. Many (74%) could not recall the nature of testing. Parents expected genetic testing to have positive impacts for the child (93%) and the family (98%), mainly to find the etiology and/or an intervention. Many parents (40%) reported not knowing their child's clinical diagnosis. They expected genetic testing would establish the diagnosis. Parents anticipated potential negative impacts of testing for children (78%) and families (87%), mainly finding another illness or not finding potential interventions. Abnormal results explaining the disorder were found in 9% of children. In summary, genetic results for developmental disorders are unlikely to meet parental expectations. [ABSTRACT FROM AUTHOR]

Objective: To describe patterns in preferred dimensions of change in therapy goals identified by individuals with developmental disability and their caregivers. Methods: A retrospective chart review of Goal Attainment Scaling (GAS) goals for patients aged 2-32 years (n = 124) participating in a program of episodic care was conducted. Dimensions of change were analyzed through a mixed-methods study design. Co-occurrence rates and descriptor-to-code comparisons were computed in order to relate the dimension of change to diagnosis, International Classification of Functioning, Disability, and Health (ICF) goal domain, gender, age, and goal setter. Results: Decreased level of assistance was the most commonly identified preferred dimension of change, cited in 31.0% of goals. Decreased level of assistance remained the most frequently reported dimension of change in multiple subgroup analyses. Conclusion: Independence is highly valued by parents and individuals with developmental disability. This finding should help guide therapy plans or program development addressing task performance. [ABSTRACT FROM AUTHOR]

Background and Aim: Children with mental disability have delayed object control motor skills. The purpose of this study was to evaluate the effect of selective physical practice intervention on object control skills of 7-10 year old children with mental disability. Materials and Methods: In this quasi-experiment study, 30 children aged 7- 10 years with mental disability were selected from mentally disabled care centers of Ahvaz based on available time sampling and randomly classified in two experimental (height, 128.8±14.8; weight, 29±9.12) or control (height, 126. 5±15.7; weight, 31.12±28.2) groups. Then, they were evaluated by gross motor development subscales in pre-test. Participants in the experimental group trained 3 times a week, 45 mins each session in motor skill training programs for 8 weeks. Children in the control group, on the other hand, performed typical school activities and were not involved in regular sport training. A post-test was conducted after training period. Statistical analysis was done with one wayanova and paired T test using SPSS v. 20 software. The significant level was set at p< 0.05. Ethical Considerations: This study was approved in Research Ethics Committee of Sport Sciences Research Institute with the code IR.SSRI.REC.1397.390. Findings: The results revealed that 8-week selective physical practice significantly affected object control variables such as striking a ball with hand (p=0.001), dribbling (p=0.001), catching (p=0.001) and throwing (p=0.001), however it did not affect striking a ball with foot (p=0.001) and rolling significantly (p=0.001). Conclusion: According to the finding of the present study, physical practice intervention seems to improve object control skills in children with mental disability. [ABSTRACT FROM AUTHOR]

Background: Parents often face many barriers when taking care of their offspring with disabilities. In childhood, support needs vary with families of children with Down syndrome often reporting less caregiving challenges. However, it is unclear whether support needs vary in adulthood. This study compared parents of adults with Down syndrome (DS), autism spectrum disorder (ASD) and cerebral palsy (CP) regarding support needs of their offspring with intellectual and developmental disabilities (IDD) and their families. Method: Data were collected via a national survey in the United States with 189 parents of adults with IDD. Results: Across the quantitative and qualitative analyses, parents of adults with DS (versus CP and ASD) reported significantly greater recreational, natural supports, more formal services and less future planning barriers. Conclusion: The results indicate that the DS advantage may persist in adulthood regarding support needs. More research is needed to understand different types of support needs. [ABSTRACT FROM AUTHOR]

This review aims to describe the way in which people with intellectual and/or developmental disabilities (IDD) are treated within the criminal justice system (CJS) in the United Kingdom (UK). The relevant empirical literature and national reports are reviewed, and the current care model for offenders with IDD described. The care of people with IDD within the CJS is relatively advanced in UK; however, offenders with IDD experience difficulties at all stages. This includes engagement with police and the courts, accessing adapted therapies, and after discharge from inpatient care or release from custody. This review highlights a number of strengths of the existing model of care, as well as ongoing challenges. Care of people with IDD within the CJS is highly political, and many aspects of the current model operate according to government policy, based upon charitable or independent review evidence, rather than empirical research. Further research on people with IDD in the CJS is urgently needed, to fully understand the factors related to treatment outcomes. [ABSTRACT FROM AUTHOR]

The article discusses a family-centered approach that primary care physicians and other medical staff can take to alter the way they provide services to parents and children with developmental disabilities. Topics covered include the effectiveness of family-centered strategies in helping children with developmental disabilities, the adaptive care plan (ACP) that individualize the health care experience, and the role of a child life specialist in implementing ACP.

Publicly funded self‐directed budgets for purchasing community‐based long‐term services and supports for people with intellectual and/or developmental disabilities (IDD) have become a wide‐spread service model in the United States and internationally. The current study aims to understand parents' experiences in navigating self‐directed support programs with their adult child with IDD. We utilized qualitative content analysis of interviews with 26 parents of adult children with IDD enrolled in self‐directed budget programs in five U.S. states. Twenty‐four parents reported numerous programmatic barriers to person‐centered supports falling within three thematic areas: administrative issues, budgeting challenges, and inadequate supports. Parents of adult children with IDD value self‐directed supports, although programs cannot cover all possible independent living needs due to a number of factors, including unavailability of desired supports, program rules, or budget limitations. As practices vary by program, our research suggests approaches from different programs that families may find helpful. [ABSTRACT FROM AUTHOR]

Whether to initiate or to withhold Renal Replacement Therapy (RRT) in children with severe developmental disability (DD) remains a topic of intense debate. The present study investigated the opinion of professionals on this difficult issue and proposed a checklist with guiding questions for decision-making. Clinicians affiliated to different organizations involved in pediatric nephrology worldwide were invited to respond to a web-based survey. This survey focused on the collection of demographic data of the respondents together with their opinion concerning the decision-making regarding RRT in a particular case and for children with severe DD in general. A total of 286 professionals responded to the survey. Sixty-six percent supported initiating RRT in the child of the case report, with pre-emptive transplantation being the preferred modality. Important arguments pro RRT initiation in children with severe DD in general were parental preference, decrease of suffering, and improvement of survival and quality of life. Important contraindications included low IQ, severe comorbidities, and inability of the patient to take medication or for the family to provide sufficient care.Conclusion: The present study presents an inventory on the opinions of health care professionals involved in RRT in children regarding the treatment of children with DD and assists in the decision-making process by identifying important medical and psychosocial arguments for initiating or withholding RRT in severe DD patients. What is Known: •Renal Replacement Therapy (RRT) in children with severe developmental disability (DD) is a topic of intense debate. •Previous studies on the opinion of professionals mainly focused on the use of IQ as an argument in the decision-making whether or not starting RRT. What is New: •The present study investigated the opinion of professionals with regard to considering initiation or withholding RRT in children with severe DD and identified medical and psychosocial arguments playing a role in the decision-making process. •Based on these arguments, a checklist with guiding questions for decision-making is proposed. [ABSTRACT FROM AUTHOR]

Background Frailty is an established predictor of admission into long-term care (LTC) and mortality in the elderly population. Assessment of frailty among adults with intellectual and developmental disabilities (IDD) using a generic frailty marker may not be as predictive, as some lifelong disabilities associated with IDD may be interpreted as a sign of frailty. This study set out to determine if adding the Home Care-Intellectual and Developmental Disabilities Frailty Index (HC-IDD Frailty Index), developed for use in home care users with IDD, to a basic list of predictors (age, sex, rural status, and the Johns Hopkins Frailty Marker) increases the ability to predict admission to long-term care or death within one year. Methods A retrospective cohort study was conducted using Residential Assessment Instrument for Home Care (RAI-HC) data for adult home care users with IDD who had a home care assessment between January 1, 2010 and December 31, 2013 (N = 6,169). Results The HC-IDD Frailty Index was found to significantly improve prediction of transitions into LTC or death by explaining an additional 5.95% of the variance in such transitions among home care users with IDD (p value < .0001). Conclusions We recommend the use of the HC-IDD Frailty Index in care planning and in further research related to the effectiveness of interventions to reduce or delay adverse age-related outcomes among adults with IDD. [ABSTRACT FROM AUTHOR]

Background: The literature emphasizes that friendships are essential to youths' successful transition to and adjustment in adulthood. Few studies have explored the friendships of transition‐aged youths with intellectual and developmental disabilities (IDD), and even fewer include youths' own perspectives. This qualitative study explored the perspectives of transition‐aged youths with IDD regarding their own experiences of friendship. Method: A subset of video‐recorded data of 21 interviews with seven participants (20–24 years) was extracted from a larger study for secondary analysis. Data were analysed using thematic analysis, informed by constructivist grounded theory methods. Results: Three themes were revealed: meanings of friends and friendship, deepening self‐knowledge and negotiating in(ter)dependence. Conclusions: The findings expand existing knowledge about friendships of transition‐aged youths with IDD. Findings can potentially inform development of new services or enhancement of existing services aimed at facilitating transition to adulthood for youths with IDD and point to key areas for future research. [ABSTRACT FROM AUTHOR]

This qualitative study aimed to understand how community-level cultural beliefs affect families’ and professionals’ care for children with autism and developmental delays in immigrant communities, as a first step towards promoting early identification and access to early intervention services. The study was part of the larger New York City (NYC) Korean Community Autism Project, which was designed to identify strategies to increase awareness of autism and reduce delays in treatment seeking within the NYC Korean-American community. Our study elicited early childcare workers’ and church leaders’ beliefs about autism and developmental disorders and, in particular, early intervention. We also elicited responses to newly developed outreach materials targeting this community. An inductive approach was used to identify concepts and categories associated with autism. Our study confirmed that discomfort, stigma and discrimination are the prevailing community attitudes toward autism and developmental disorders in the Korean-American community. Families’ and professionals’ understanding of autism and their care for children are affected by these community beliefs. Approaching immigrant communities with general information about child development and education rather than directly talking about autism and developmental disorders is likely to engage more families and professionals in need for diagnostic evaluation and early intervention for autism. [ABSTRACT FROM AUTHOR]

Parent-carers need support to continue to care for their child with significant disability in their home. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer well-being. This article reports the findings of a qualitative study which adopted an Appreciative Inquiry philosophy to interview parent-carers of children with significant intellectual and/or developmental disabilities on how formal support services have helped them maintain their health and well-being, and disability support staff on how they help such parent-carers foster their health and well-being. We conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of the scope of respite services are required to best support families of children with significant disability in their home. [ABSTRACT FROM AUTHOR]

Background: Advances in medical science and success in increasing the survival rate of vulnerable infants have raised the future evolution issues of these children. Developmental and behavioral disorders are the most common problem in children after discharge from NICU. A lot of factors are involved in the occurrence of developmental disorders. Objectives: According to the importance of the subject and lack of accurate regional information, this study aimed to investigate the developmental disorders and related factors in low weight infants. Methods: This retrospective cohort study was performed on 76, 4 - 12 month-old infants with a history of hospitalization in NICU of Shiraz Hazrat Zeinab Hospital with an average weight of 1800 grams. These infants were evaluated developmentally by ASQ (Age and stage questionnaire). The data was analyzed by statistical tests. Results: Using ASQ, 17% of children were detected as having developmental disorders. The percentages of developmental disorders for fine and gross motor domains, problem solving ability, communication and personal-social behaviors were 14.5%, 23.7%, 19.7%, 17.6% and 14.5%, respectively. The correlation coefficient statistical test did not show any significant relationship between developmental disorder with mechanical ventilation, duration of hospitalization, surfactant and betamethasone injection, and final diagnosis of diseases (r < 1). Conclusions: Although improvement in respiratory therapy, monitoring system, non-invasive procedures and developmental care have decreased neonatal mortality rate and prematurity complications, but we cannot find any relationship between related risk factors and neurological outcomes. Developmental delay of low birth weight infants must be detected and rehabilitation started soon after discharge from NICU. [ABSTRACT FROM AUTHOR]

Adults with developmental disabilities are experiencing longer life expectancies, which means that many parents are providing care well into their older adulthood for their children who have disabilities. Research has found such caregiving has implications for older caregivers, particularly with regard to their social and emotional well-being. Parents also express concerns about being unable to care for their children in the future, and being unsure about planning for when that time comes. Service providers must be aware of these concerns so that older caregivers can access appropriate supports. [ABSTRACT FROM AUTHOR]

Many adolescents with developmental disabilities do not learn the safety skills needed to maintain physical well-being in domestic and community environments. Literacy-based behavioral interventions (LBBIs) that combine print, pictures, and behavioral rehearsal are effective for promoting acquisition and maintenance of self-care skills, but have not been investigated as safety skill intervention. Also, LBBIs have primarily been implemented by teachers and other professionals. In this study, a peer partner was taught to deliver an LBBI story to students so they would learn to perform a basic first aid routine: cleaning and dressing a wound. Results showed that students’ accuracy with the first aid routine increased after a peer delivered the LBBI instructional package, and maintained after the peer stopped delivering it. This study demonstrates the effectiveness of the LBBI instructional package for teaching first aid safety skills, and extends previous research showing the efficacy of peers in delivering this intervention. [ABSTRACT FROM AUTHOR]

The purpose of this study was to examine the characteristics of Part C programs and how funding has impacted the quality of services for children and families given ongoing budgetary concerns. Perceptions of State Early Intervention Coordinators (EICs) regarding their state Part C systems were obtained through an online survey. Using survey research methods to collect and analyze data, two primary questions were addressed in the current study: (a) What are the general characteristics of Part C programs that may be related to fiscal issues? and (b) What is the perceived impact of funding on the quality of services for children and families? A majority of respondents indicated their state program implements a primary service provider model, relies heavily on medical funding streams such as Medicaid, and is experiencing provider shortages. In addition, respondents commented on quality, trends, and funding of their state Part C programs. The findings of this study provide insight about the general characteristics of Part C programs, along with the perceived impact of funding on Part C services at the national level for policy makers, administrators, professionals, and families. [ABSTRACT FROM AUTHOR]

Abstract: Adults with intellectual and/or developmental disabilities (IDD) in the United States are supported by both formal Medicaid‐funded long‐term services and supports and family caregivers. Lack of alternative housing options and wait lists for long‐term services and supports means the role of the family caregiver is and will continue be critical. Rising long‐term services and supports costs combined with goals to improve care coordination and access to services are driving more states to change the design of their long‐term services and supports systems to a Medicaid‐Managed Long‐Term Services and Supports (MLTSS) approach. Best practices for implementing MLTSS for individuals with IDD include acknowledging the family caregiver role. The current study's aim is to understand how family caregivers and their roles are recognized in MLTSS for adults with IDD in Kansas. Kansas was selected given their unique approach to MLTSS for adults with IDD, referred to as KanCare. In‐depth semi‐structured telephone interviews were completed with 31 stakeholders in Kansas, including statewide/regional representatives (N = 13), service coordination providers (N = 7), and family caregivers (N = 11). Additional family support services were available in KanCare, but families had difficulty accessing them. No formal processes were reported for assessing the needs of family caregivers in KanCare and families found communications with managed care entities challenging. Families reported difficulties with taking on responsibility of managing in‐home supports and there were concerns about being paid to provide care as a guardian. Family caregivers play a critical role in MLTSS, including assisting with care coordination and access to services. However, their role was not formally acknowledged in KanCare. Future research, practice, and policy efforts should focus on promoting family caregiver assessments and identifying best practices for supporting family caregivers in MLTSS. [ABSTRACT FROM AUTHOR]

Abstract In the last decade preterm birth rates have continued to rise hand in hand with improving neonatal care. Unfortunately rates of severe disability have remained static. National benchmarking of key outcomes shows significant variations in adaptation of best practices across United Kingdom (UK). While emerging technologies give us a glimpse of fascinating possibilities, widespread adoption of evidence-based interventions should remain a priority. In this article we have attempted to outline mechanisms of preterm brain injury and identify the most promising strategies currently available to minimize it. Quality improvement strategies (QI) that can help perinatal teams adopt best practices and promising new therapies are discussed. [ABSTRACT FROM AUTHOR]

Evidence-based practice as a process requires the appraisal of research as a critical step. In the field of developmental disabilities, single-case experimental designs (SCEDs) figure prominently as a means for evaluating the effectiveness of non-reversible instructional interventions. Comparative SCEDs contrast two or more instructional interventions to document their relative effectiveness and efficiency. As such, these designs have great potential to inform evidence-based decision-making. To harness this potential, however, interventionists and authors of systematic reviews need tools to appraise the evidence generated by these designs. Our literature review revealed that existing tools do not adequately address the specific methodological considerations of comparative SCEDs that aim to compare instructional interventions of non-reversible target behaviors. The purpose of this paper is to introduce the Comparative Single-Case Experimental Design Rating System (CSCEDARS, "cedars") as a tool for appraising the internal validity of comparative SCEDs of two or more non-reversible instructional interventions. Pertinent literature will be reviewed to establish the need for this tool and to underpin the rationales for individual rating items. Initial reliability information will be provided as well. Finally, directions for instrument validation will be proposed. [ABSTRACT FROM AUTHOR]

Single-case experimental designs (SCEDs), or small-n experimental research, are frequently implemented to assess approaches to improving outcomes for people with disabilities, particularly those with low-incidence disabilities, such as some developmental disabilities. SCED has become increasingly accepted as a research design. As this literature base is needed to determine what interventions are evidence-based practices, the acceptance of SCED has resulted in increased critiques with regard to methodological quality. Recent trends include recommendations from a number of expert scholars and institutions. The purpose of this article is to summarize the recent history of methodological quality considerations, synthesize the recommendations found in the SCED literature, and provide recommendations to researchers designing SCEDs with regard to essential and aspirational standards for methodological quality. Conclusions include imploring SCED to increase the quality of their experiments, with particular consideration regarding the applied nature of SCED research to be published in Research in Developmental Disabilities and beyond. [ABSTRACT FROM AUTHOR]

Background: Functional communication training (FCT) is considered an evidence-based practice for treating problem behavior in individuals with developmental disabilities (e.g. autism, intellectual disabilities, down syndrome, etc.). However, there is little known on how to sustain behavioral change following FCT interventions. This systematic and quality review synthesizes the current literature base evaluating the maintenance and generalization of behavioral effects following FCT.Method: A systematic review identified 37 studies that met the pre-set inclusion criteria. Those studies were summarized in terms of: (a) generalization dimension, (b) generalization assessment design, (c) maintenance assessment design, (d) maintenance and generalization teaching strategy, and (e) latency to maintenance probes. All studies employed single-case research designs and were evaluated using the What Works Clearinghouse pilot single-case research standards (Kratochwill et al., 2013) as adapted by Maggin, Briesch, and Chafouleas (2013). Maintenance and generalization data were evaluated using a researcher-developed rubric based on the WWC standards.Results and Discussion: Results indicate that 30 studies met standards or met standards with reservations while only six studies also met all of the maintenance and generalization standards. Of the six studies, five did not implement any additional strategies beyond the contacting natural contingencies that is inherent in the FCT intervention. Implications for future research and practice are discussed. [ABSTRACT FROM AUTHOR]

Background: When developmental disabilities researchers use multiple-baseline designs they are encouraged to delay the start of an intervention until the baseline stabilizes or until preceding cases have responded to intervention. Using ongoing visual analyses to guide the timing of the start of the intervention can help to resolve potential ambiguities in the graphical display; however, these forms of response-guided experimentation have been criticized as a potential source of bias in treatment effect estimation and inference.Aims and Methods: Monte Carlo simulations were used to examine the bias and precision of average treatment effect estimates obtained from multilevel models of four-case multiple-baseline studies with series lengths that varied from 19 to 49 observations per case. We varied the size of the average treatment effect, the factors used to guide intervention decisions (baseline stability, response to intervention, both, or neither), and whether the ongoing analysis was masked or not.Results: None of the methods of responding to the data led to appreciable bias in the treatment effect estimates. Furthermore, as timing-of-intervention decisions became responsive to more factors, baselines became longer and treatment effect estimates became more precise.Conclusions: Although the study was conducted under limited conditions, the response-guided practices did not lead to substantial bias. By extending baseline phases they reduced estimation error and thus improved the treatment effect estimates obtained from multilevel models. [ABSTRACT FROM AUTHOR]

Background: As people with intellectual and developmental disabilities (PWIDD) are living longer and experience chronic health conditions, there is greater likelihood that direct care workers (DCWs) will need to provide palliative care services. Objective: The purpose of this study was to explore DCWs' experience with palliative care and challenges they faced. Design: This study was an exploratory, descriptive study using qualitative methods. Setting/Subjects: Fifty-four DCWs participated in nine focus groups at five nonprofit community-based organizations that provided residential and day programming services for PWIDD. Methods: Participants completed a short demographic questionnaire before each of the focus group sessions. In the focus group sessions, participants were asked to describe their experiences of providing palliative care in the workplace and whether they had any difficulties providing palliative care. The focus group discussions were digitally recorded, transcribed professionally, and de-identified for analysis. Results: Challenges DCWs faced and strategies they employed to meet PWIDD's needs were described using two main themes: “challenges” and “meeting PWIDD's needs.” The first theme encompassed difficulties in communicating with clients, anxiety of anticipating death, and limited organizational resources or support. Empathy, extra attention, adaptation in care, and peer support comprised the second theme. Conclusions: The results indicate some intellectual and developmental disability service agencies and DCWs are not equipped to care for PWIDD with palliative care needs, and DCWs try to meet PWIDD palliative care needs through individual efforts and peer support. These findings can inform training development for DCWs, as well as necessary organizational efforts to support DCWs. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this paper is to provide a commentary on “Learning disability services: user views on transition planning”.Design/methodology/approach The commentary provides a discussion of the concept of continuity of care (Forbes et al., 2001; Freeman et al., 2000) in relation to transition from children’s to adults’ services for young people with intellectual/developmental disabilities.Findings Continuity of care is an important consideration for this population and is emphasised in recent policy initiatives in England, as well as being highlighted by young people and their families as a significant aspect of their transition experience. Despite this, evidence suggests it is not currently achieved for many young people and their families, and a number of challenges that may contribute to this are highlighted.Originality/value The commentary emphasises that continuity of care should be a key consideration for services supporting young people and their families at transition. [ABSTRACT FROM AUTHOR]

BACKGROUND AND OBJECTIVES: Timely provision of developmental services can improve outcomes for children 0 to 3 years old with developmental delays. Early Intervention (EI) provides free developmental services to children under age 3 years; however, data suggests that many children referred to EI never connect to the program. We sought to ensure that 70% of patients referred to EI from an academic primary care clinic serving a low-income population were evaluated within 120 days of referral. METHODS: Recognizing that our baseline system of EI referrals had multiple routes to referral without an ability to track referral outcome, we implemented a multifaceted referral process with (1) a centralized electronic referral system used by providers, (2) patient navigators responsible for processing all EI referrals submitted by providers, and (3) a tracking system postreferral to facilitate identification of patients failing to connect with EI. RESULTS: The percentage of patients evaluated by EI within 120 days increased from a baseline median of 50% to a median of 72% after implementation of the systems (N = 309). After implementation, the centralized referral system was used a median of 90% of the time. Tracking of referral outcomes revealed decreases in families refusing evaluations and improvements in exchange of information with EI. CONCLUSIONS: Rates of connection to EI improved substantially when referrals were centralized in the clinic and patient navigators were responsible for tracking referral outcomes. Knowledge of EI intake processes and relationships between the practice and the EI site are essential to ensure successful connections. [ABSTRACT FROM AUTHOR]

Early intervention (EI) service providers working with young children with developmental disabilities and delays and their families often utilize coaching practices to engage caregivers in the EI process. Within the literature, the usefulness of coaching has been identified. However, little is known about how coaching practices look in naturalistic settings and service providers' perceptions of these practices. Through the use of an online survey, this study examined beliefs and reported practices of EI service providers. The findings indicated that EI providers considered coaching to be meaningful and offered several benefits to both caregivers and children. Some of the perceived advantages included engaging and empowering caregivers and increased opportunities for children to practice and master skills. Most coaching practices were ranked as highly important and were reportedly utilized frequently by service providers in the sample. However, some coaching practices, such as reflection and feedback, were not implemented as often as joint planning, observation, and action. In addition, the participants identified challenges and facilitators for using coaching as a style of interacting with caregivers. Discussion of EI provider perceptions, limitations, recommendations, implications, and future research directions are presented. [ABSTRACT FROM AUTHOR]

The complexity of the human brain emerges from a long and finely tuned developmental process orchestrated by the crosstalk between genome and environment. Vis à vis other species, the human brain displays unique functional and morphological features that result from this extensive developmental process that is, unsurprisingly, highly vulnerable to both genetically and environmentally induced alterations. One of the most striking outcomes of the recent surge of sequencing-based studies on neurodevelopmental disorders (NDDs) is the emergence of chromatin regulation as one of the two domains most affected by causative mutations or Copy Number Variations besides synaptic function, whose involvement had been largely predicted for obvious reasons. These observations place chromatin dysfunction at the top of the molecular pathways hierarchy that ushers in a sizeable proportion of NDDs and that manifest themselves through synaptic dysfunction and recurrent systemic clinical manifestation. Here we undertake a conceptual investigation of chromatin dysfunction in NDDs with the aim of systematizing the available evidence in a new framework: first, we tease out the developmental vulnerabilities in human corticogenesis as a structuring entry point into the causation of NDDs; second, we provide a much needed clarification of the multiple meanings and explanatory frameworks revolving around "epigenetics", highlighting those that are most relevant for the analysis of these disorders; finally we go in-depth into paradigmatic examples of NDD-causing chromatin dysregulation, with a special focus on human experimental models and datasets. [ABSTRACT FROM AUTHOR]

Neurodevelopmental disorders (NDDs) are a group of diseases whose symptoms arise during childhood or adolescence and that impact several higher cognitive functions such as learning, sociability and mood. Accruing evidence suggests that a shared pathogenic mechanism underlying these diseases is the dysfunction of glutamatergic synapses. We summarize present knowledge on autism spectrum disorders (ASD), intellectual disability (ID), Down syndrome (DS), Rett syndrome (RS) and attention-deficit hyperactivity disorder (ADHD), highlighting the involvement of glutamatergic synapses and receptors in these disorders. The most commonly shared defects involve α-amino-3-hydroxy-5-methyl- 4-isoxazole propionic acid receptors (AMPARs), N -methyl- d -aspartate receptors (NMDARs) and metabotropic glutamate receptors (mGluRs), whose functions are strongly linked to synaptic plasticity, affecting both cell-autonomous features as well as circuit formation. Moreover, the major scaffolding proteins and, thus, the general structure of the synapse are often deregulated in neurodevelopmental disorders, which is not surprising considering their crucial role in the regulation of glutamate receptor positioning and functioning. This convergence of defects supports the definition of neurodevelopmental disorders as a continuum of pathological manifestations, suggesting that glutamatergic synapses could be a therapeutic target to ameliorate patient symptomatology. [ABSTRACT FROM AUTHOR]

Objective: Antipsychotic use is controversial in the management of adults with intellectual and developmental disabilities (IDD) because of inconclusive evidence for efficacy in the absence of a comorbid psychiatric condition, and substantial concerns about adverse effects. We aimed to characterize antipsychotic use among Ontario adults with IDD and compare profiles of those with and without a documented psychiatric diagnosis.Method: This population-based study included 51,881 adults with IDD under 65 y as of April 2010 receiving provincial drug benefits in Ontario who were followed until March 2016 to identify those dispensed at least one antipsychotic medication. Profiles of those with and without a psychiatric diagnosis were compared.Results: Overall, 39.2% of adults ( n = 20,316) were dispensed an antipsychotic medication, which increased to 56.4% in a subcohort residing in group homes. Almost one-third (28.91%) of people prescribed an antipsychotic medication did not have a documented psychiatric diagnosis. Those without a psychiatric diagnosis differed considerably from those with a diagnosis. In particular, those without a psychiatric diagnosis were older, less likely to have used antidepressants or benzodiazepines in the year before, and less likely to have used ambulatory and acute care.Conclusions: Antipsychotic use in IDD is common, and occurs frequently without a psychiatric diagnosis. Attention toward how antipsychotics are prescribed and monitored for people with IDD in Canada is warranted to ensure appropriate prescribing. [ABSTRACT FROM AUTHOR]

Abstract: This article describes a four‐component context‐based change model that can be used to unfreeze the status quo and drive change that enhances valued outcomes of people with intellectual and developmental disabilities. The model's components involve contextual analysis, planning, doing, and evaluating. The article also includes guidelines for synthesizing information from the contextual analysis, selecting change strategies that influence valued outcomes, and evaluating valued outcomes and organization and systems‐level outputs. The article concludes with a discussion of the next steps involved in driving valued outcomes. [ABSTRACT FROM AUTHOR]