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People with intellectual disabilities share the same human need for affectionate and intimate relationships as people without a disability. Limited research has investigated sexual issues and concerns among adults with intellectual disabilities, including dating, intimate relationships, and marriage. This study employed Interpretative Phenomenological Analysis to identify the understanding and needs regarding sexuality of people with intellectual disabilities. Five people with mild grade intellectual disabilities participated in face-to-face interviews in which they discussed their struggle to have romantic relationships and sexual encounters. Their "understanding" and "doing" on sex issues were identified. The lack of adequate sex education and Chinese culture potentially impact people with intellectual disabilities' beliefs and behaviors on sexuality. Various types of intervention were discussed. Further research is necessary to understand the cultural context of the challenges and experiences regarding sexuality faced by people with intellectual disabilities and their families. [ABSTRACT FROM AUTHOR]

Youth with intellectual disabilities face barriers to receiving sex education including the lack of educational tools accessible for multiple cognitive and emotional learning styles. We conducted exploratory research to gather input from a diverse group of youth with disabilities and their guardians about needed learning modalities and sexual health content areas. Three focus groups were conducted with youth ages 17–28 years (n = 14) and three with parents (n = 16). An applied thematic analysis of the transcripts resulted in three structural codes related to topics of greatest interest for youth sexuality education, teaching tools and methods, and needs for ancillary parent education and support to help youth access information and health care. We identified a total of ten themes associated with the three structural codes. Next steps will be to create educational resource prototypes that are responsive to focus group input for testing in further research. [ABSTRACT FROM AUTHOR]

Self-injurious behavior (SIB) is one of the most detrimental behaviors for the person showing it, as well as for their environment. Nevertheless, structured clinical assessments of SIB are scarce. Staff completed a Self-Harm Scale (SHS) every time they witnessed SIB in clients with an intellectual disability (ID) and co-occurring psychopathology (N = 33). Descriptive statistics were conducted to explore the nature of the incidents of SIB and the characteristics of the people involved in the incidents. In 41 weeks, 104 SIB incidents were reported for 8 out of 33 clients (24%). Incidents were most prevalent on Mondays (23%). As far as the methods of SIB concerned, cutting was the most used method (63%). Clients who showed SIB differed significantly from clients who did not on gender, having a personality disorder and communicative abilities. This study was one of the few that used an incident-based record form to report SIB by direct observation. It is hoped that the SHS helps to gain more information about SIB, to improve individualized interventions. Further research is necessary to determine the psychometric properties and clinical utility of the scale. [ABSTRACT FROM AUTHOR]

Dating agencies are a small, but growing sector of social care provision for people with intellectual disabilities. The research reported here is the first to explore, with 10 specialist agencies in the UK, why they were set up, how they operate, the barriers and problems they encounter and their success or otherwise in facilitating relationships for people with intellectual disabilities. A strong case is made for the proliferation of such services. [ABSTRACT FROM AUTHOR]

The figure of the sexual assistant is increasingly demanded as a right in the disabilities field. This figure requires debate, adaptation to the characteristics of countries and cultures, as well as to the characteristics of people with intellectual and developmental disabilities. This study presents the work carried out with representatives of Spanish organizations of people with intellectual disabilities to develop a proposal for the figure of support staff for sexual behavior. Together with a rights perspective, this proposal is aligned with the Supports paradigm to better meet the health and behavior needs of users. The figure is framed within the auto-erotic and therapeutic model of sexual assistance. This figure excludes characteristics of the erotic model that involves interaction or sexual exchange between the sexual assistant and the individual with a disability. Several advantages and disadvantages need to be carefully considered before implementing this support in a delivery service model. We argue that the proposed figure requires specific accreditation, training, and monitoring. [ABSTRACT FROM AUTHOR]

Purpose This systematic review analyzed the effectiveness of rehabilitation interventions on the employment and functioning of people with intellectual disabilities (ID), as well as barriers and facilitators of employment. Methods This was a systematic review of quantitative, qualitative, and mixed methods studies. The outcomes were employment, transition to the open labor market and functioning. The review included qualitative studies of employment barriers and facilitators. The population comprised people with ID aged 16–68 years. Peer-reviewed articles published in English between January 1990 and February 2019 were obtained from the databases Cinahl, the Cochrane Library, Embase, Eric, Medic, Medline, OTseeker, Pedro, PsycInfo, PubMed, Socindex, and the Web of Science. We also searched Google Scholar and Base. The modified selection instrument (PIOS: participants, intervention, outcome, and study design) used in the selection of the articles depended on the selection criteria. Results Ten quantitative (one randomized controlled, one concurrently controlled, and eight cohort studies), six qualitative studies, one multimethod study, and 21 case studies met the inclusion criteria. The quantitative studies showed that secondary education increases employment among people with ID when it includes work experience and personal support services. Supported employment also increased employment in the open labor market, which sheltered work did not. The barriers to employment were the use of sheltered work, discrimination in vocational experience, the use of class teaching, and deficient work experience while still at school. The facilitators of employment were one's own activity, the support of one's family, job coaching, a well-designed work environment, appreciation of one's work, support form one's employer and work organization, knowledge and experience of employment during secondary education, and for entrepreneurs, the use of a support person. Conclusions The employment of people with ID can be improved through secondary education including proper teaching methods and personal support services, the use of supported work, workplace accommodations and support from one's family and employer. These results can be utilized in the development of rehabilitation, education, and the employment of people with ID, to allow them the opportunity to work in the open labor market and participate in society. [ABSTRACT FROM AUTHOR]

People with neurodevelopmental disabilities, including intellectual disabilities and autism, want to have relationships but few are given the tools and opportunity to create those relationships in a safe and meaningful way. This strong desire to have relationships, coupled with reduced access to information, puts people with neurodevelopmental disabilities at high risk for being targets of sexual abuse and exploitation, as well as demonstrating social-sexual behavior that is unexpected or offensive to others. Research has long demonstrated that people with intellectual disabilities are sexually assaulted at much higher rates than the general population. In addition, it is common for people with intellectual disabilities and autism to miss out on employment, housing, and social opportunities due to unexpected social-sexual behaviors. To address this need, the research team developed the social-sexual education (SSE) program to teach people with neurodevelopmental disabilities how to create safe and meaningful relationships while also giving them information about sexual abuse and coercion. We recruited licensed professionals to pilot test the SSE program, and then we evaluated the tool using quantitative and qualitative methods. Our findings provide preliminary support for the SSE program. Implications and future directions are discussed. [ABSTRACT FROM AUTHOR]

The article focuses on a study conducted by the authors for understanding frailty in people with intellectual disabilities (ID) by comparing two concepts, the frailty phenotype (FP) and the frailty index (FI) taking into account factors such as feasibility and validity. Topics discussed include FI as a stronger predictor for mortality with higher feasibility, lower sensitivity of the variables of the FI to lifelong disabilities and pre-defined elements as not measurable in individuals with ID.

During transition to adulthood, emerging adulthood is characterized by continuous identity negotiations (Deaux and Perkins in Individual self, relational self, collective self. Psychology Press, Philadelphia, pp 299-313, ). However, for young people with intellectual disabilities (ID) the ID identity may overshadow the development of sexual identity (Burns in Clin Psychol Forum 137:137-139, ). This study conducted an in-depth exploration of four young people and four of their carers' experiences of the development of sexual identity alongside the ID identity. Interviews were analysed using interpretative phenomenological analysis. Young people struggled for an ' as normal as possible' adult identity, and to develop sexual identity as a ' normal' identity, in the context of the overshadowing ID identity. Despite believing they should be enabled to develop sexual identity as part of their transition to adulthood, young people faced many obstacles, including stigma related to their ID. Carers described their challenges in proactively supporting sexual identity education and exploration, due to concerns about risk. Equality and protection need not be either/or priorities; however, there remains need for considerable change in UK practice and policy if the principles of rights, independence, choice and inclusion (Department of Health in Valuing people now: a new three-year strategy for people with learning disabilities. The Stationary Office, London, ; Department of Health in Valuing people. The Stationery Office, London, ) are to be met in relation to sexual identity development in people with ID transitioning to adulthood. [ABSTRACT FROM AUTHOR]

Although sexuality is a central component of human life, it is often discouraged and inaccessible to many adults with intellectual disabilities (ID). Common misperceptions and stereotypes of people with ID, such as being asexual, childlike, or innocent, impact the provision of sexual education, opportunities, and rights for many people with ID. The aim of this study was to examine the impact of gender, familiarity with ID, and cultural orientation on predicting attitudes towards the sexuality of people with ID. Participants included 227 students from two U.S. universities with a large international student population. Collectively, predictors explained 32% of the variance in attitudes towards sexuality, with cultural orientation variables accounting for the greatest amount (27%). Using Triandis' four-factor conceptualization of culture, horizontal individualism and horizontal collectivism were associated with more positive attitudes, and vertical individualism was associated with more negative attitudes. Results highlight the impact of individual and societal characteristics on attitudes, suggesting that cultural orientation plays a role in mitigating and perpetuating stigma toward individuals with ID. Implications for research and practice are provided. [ABSTRACT FROM AUTHOR]

We examined special education classifications among students aged 3–21 in North Carolina public schools, highlighting autism spectrum disorder (ASD) and intellectual disability (ID). Results revealed variability by county in ASD and ID prevalence, and in county-level ratios of ID vs. ASD classifications. Sociodemographic characteristics predicted proportion of ASD or ID within a county; correlations showed an association between race and ID, but not ASD. County's median household income predicted proportion of students classified as ASD and ID (opposite directions), controlling for number of students and gender. Variability was unlikely related to biological incidence, and more likely related to district/school practices, or differences in resources. Disparities warrant further examination to ensure that North Carolina's youth with disabilities access necessary, appropriate resources. [ABSTRACT FROM AUTHOR]

Disability providers serve an important role in supporting the socio-sexual health and enabling the associated opportunities of individuals with intellectual and developmental disabilities (IDD). This study examined disability providers' previous training, perceptions of barriers, and training needs to support the sexual well-being of individuals with IDD. In total, 263 disability professionals in Alaska, Kentucky, and Wyoming completed online surveys. Nearly all providers endorsed that people with IDD need training and support for sexual health. However, almost a third had not received training to address people's sexual health. Further, less than half of professionals had received any training from their agencies. The highest-rated barrier across all providers involved insufficient training. Professionals' perceptions of barriers differed based on whether they had received training for a given topic, with those who had received training rating the barrier as lower. In considering what topics should be included in trainings for staff, a majority of providers endorsed all topics included by the authors. Some associations were detected between whether providers desired certain training topics and their agreement with specific barriers. Providers' responses highlight the pressing need for policy and training to support the sexual rights and autonomy of people with IDD. Specific recommendations for training content and format are provided. [ABSTRACT FROM AUTHOR]

Background: Research shows that people with intellectual disability both want and benefit from relationships. Caregivers play an important role in the development and maintenance of these relationships. Barriers to relationships include lack of privacy, inadequate sex education, and lack of public transportation. Method: The sample included 42 primary caregivers of young people with intellectual disability aged 14 to 25. Interviews were evaluated with the qualitative content analysis. Results: Two-thirds of the caregivers reported the young people having had at least one relationship. The caregivers tended to minimize the importance of the young people's relationships and reported, in equal measure, both positive and negative relationship skills. Caregivers described limited choice in terms of partner selection, lack of social opportunities, and low quality couple time. Parents face the detachment process with ambivalence and wish for a stable partnership for their children in the future. Discussion: Young people with intellectual disability face barriers and limitations regarding intimate relationships. Some young people may keep their partnerships secret to avoid possible restrictions from their caregivers. Their time together is quantitatively high, but qualitatively poor due to a lack of transportation and inclusive services. Caregivers need to support the young people's autonomy and take their relationships more seriously. [ABSTRACT FROM AUTHOR]

A limited amount of previous work has investigated the effects of course-based disability awareness programs in promoting attitudes towards people with disabilities. This study aimed to evaluate the effects of a 10-week course on university students' ( N = 42) attitudes towards individuals with intellectual disabilities. The effectiveness of the intervention was evaluated through quantitative and qualitative methods. The quantitative results showed significant improvements in the participants' attitudes (i.e., Empowerment and Similarity) after the intervention. Qualitative findings provided some support for the quantitative results and provided reasons for the attitudinal improvements. Overall, the results suggested that the course-based intervention program improved university students' attitudes towards people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Prejudices still surround the issue of sexuality of persons with intellectual disability (ID), both in families and in the professional community. To assess attitudes of parents, professionals and the general population towards the sexuality of persons with ID, so that appropriate sexual education could be introduced and implemented with persons with ID. We used Attitudes to Sexuality Questionnaire—Individuals with an Intellectual Disability, with a questionnaire on general demographic data. Attitudes of professionals on the sexuality of persons with ID mainly show conservative viewpoints; parents feel unprepared to educate their children on the subject of sexuality. Attitudes on sexuality of persons with ID are important to consider since they can provide valuable clues as to the direction in which educational programs should be moving in order to have an effect on achieving a better quality of life for persons with ID. [ABSTRACT FROM AUTHOR]

The purpose of this study was to examine the frequency and quality of primary care physician (PCP) recommendations to investigate the management of young children with delays and self-injury (SIB; e.g., head banging) from the time of initial SIB concern to specialty referral as recommended by the American Academy of Pediatrics (AAP). Via a structured electronic health record review, PCP referrals and recommendations were examined for a cohort of 250 children (10–59 months old) with delays and SIB. Only a small portion of cohort charts reviewed (8.0%) received AAP recommended intervention via referral to subspecialty providers by their PCP. Further, only 37.5% received SIB-specific care recommendations. Findings suggest that future targeted education is needed to improve primary care access to AAP recommended intervention for young children with delays and early SIB. [ABSTRACT FROM AUTHOR]

Polypharmacy is a risk factor for drug interactions (DI). Adults with intellectual and developmental disabilities (IDD) are at increased risk for polypharmacy and as such increased risk for potential DIs. The objectives of this study were to determine the number of potential DIs present in medication regimens of adults with IDD as well as factors associated with the number of potential DIs. Community-based cross sectional study. Retrospective analysis of data obtained from the cross-sectional National Core Indicators survey in the state of Oklahoma in the United States. 598 respondents were included. The number of medications prescribed, the number of potential DIs, and the association between participant factors with the total number of potential DIs present. 598 adults with IDD were studied. In this sample, over 80% had at least one DI present in their current medication regimen. There were 8.9 ± 9.7 potential DIs in the medication regimens, with 29.8% of participants having 12 or more. Greater number of medications was significantly associated with a greater number of potential drug interactions. People with IDD who take medications are exposed to potential drug interactions. Health care professionals must have clear goals and endpoints in mind when prescribing medications for this vulnerable population. Potential drug interactions are common in the medication regimens of adults with intellectual or developmental disabilities. Polypharmacy is associated with a greater number of potential drug interactions. Health care professionals must have clear goals and endpoints in mind when prescribing medications for adults with IDD to minimize the occurrence of drug interactions. [ABSTRACT FROM AUTHOR]

The aim of this study was to develop a pictorial scale for use in assessing the sexual knowledge of male high school students with intellectual disabilities studying at special education schools in Taiwan. A pictorial scale with 40 multiple-choice items was developed to assess the participants' relevant knowledge. Each item consisted of a written question and corresponding illustrations. A total of 181 male high school students in Taiwan participated in the study. Construct validity using exploratory factor analysis generated 26 items formatted into six subscales: puberty and physiology, body boundaries, proper touching, proper relationships, sexually transmitted diseases, and sex and the law. The variance explained for the six subscales was between 6.93 and 11.34%, and the variance explained for the whole scale was 53.99%. The reliability of Cronbach's alpha was between.58 and.78, and the whole scale's alpha value was.87. The participants demonstrated a relatively high level of knowledge on the body boundaries and proper relationships subscales, followed in descending order by proper touching, sex and the law, puberty and physiology, and sexually transmitted diseases.Please check and confirm that the authors and their respective affiliations have been correctly identified and amend if necessary.Yes, I confirm that the author and affiliation have been correctly identified. [ABSTRACT FROM AUTHOR]

A scoping review was conducted to identify how peer-education models are being used in sexuality and respectful relationship education for people with a disability. The search was conducted in August 2021 using the Joanna Briggs framework to scope and map the literature and research activity. Using strict criteria, 7 online databases, grey literature and reference lists were searched for resources written or published in the last 15 years (2006–2021). Relevant sources were shortlisted and assessed by the two authors. Six sources met the criteria for inclusion in this review. In total, four educational programs are described and discussed. The results identify four sexuality and respectful relationship programs that met screening criteria: (1) "Telling it like it is!", (2) "Sexual Lives and Respectful Relationships", (3) "Talking about sex and relationships: the views of young people with learning disabilities", and (4) "Health, Safety & Sexuality Training for You & Me". Peer-educators experienced increased confidence and feelings of empowerment, while people without an intellectual disability reported a greater understanding of the challenges and experiences of people with a disability. The use of peer educators to deliver sexuality and respectful relationship education for people with intellectual disability is a promising education model with multiple potential benefits for participants. However, more research is needed to understand the consequences and limitations of such programs. [ABSTRACT FROM AUTHOR]

Individuals with an intellectual disability (ID) have sexual feelings, are sexually active and have ideas about sexuality. There is limited information available about the ideas and experiences regarding sexual expression, interests and knowledge of sexual rights in this population. This study aims to identify the ideas, expressions, barriers to sexuality, experienced by people with IDs, using the Nominal Group Technique (NGT). The NGT was used to explore the views of people with mild ID on sexual needs and issues. NGT is a structured and specific form of focus group research. It is a 'single-question' technique that combines quantitative and qualitative methods of data collection for relatively small groups. NGT involves four steps: silent generation of ideas, round robin recording of ideas, clarification of ideas, and ranking of ideas. It was an inclusive research project: people with an ID were involved in the design, planning, performance, and analysis of the study. In total 39 people with mild IDs were able to explore their experiences and ideas on sexuality. They were able to answer questions like: What are their needs? What are their problems? They were capable of expressing their views, needs and barriers on sexuality and sexual rights. The most important items were the relationship between two people (47%), sex and sex related subjects as sex education (23%), and feeling safe and comfortable (10%). People with mild IDs are capable of expressing their views on sexuality and sexual rights. The participants stated that they need support in achieving these rights. The nominal group technique appears to be an appropriate methodology on sensitive issues as sexuality and sexual rights. [ABSTRACT FROM AUTHOR]

Families of young children with intellectual and developmental disabilities (IDD) experience challenges that may be exacerbated by challenging behavior (CB) and a lack of specialized support services. While waiting for services, families must implement strategies on their own, while taking arduous steps to access supports to eventually meet their needs. Through an online survey, 60 families reported on their experiences managing CBs in the absence of specialized services, including strategies adopted, challenges encountered in implementing interventions, perceptions regarding their efficacy, steps taken to access services, and needs in terms of specialized services and external supports. More than half reported feeling inadequate to the task. These families identified needs in relation to both technical and psychological support. We suggest options that could be offered to families waiting for services to strengthen the sense of parental competence, help to better manage CBs with parent-mediated interventions, and support families' psychological well-being. [ABSTRACT FROM AUTHOR]

Non-disabled siblings of individuals with intellectual and developmental disabilities (IDD) usually experience trajectories to gradually intensify their involvement in caregiving. However, non-disabled siblings in Asian countries have been woefully overlooked in research despite the fact that Asian countries hold over half of the world's population and have a set of family values different from Western countries. This exploratory study examined experiences and perspectives of Taiwanese non-disabled siblings of individuals with IDD across lifestages. The researcher used a phenomenological approach to examine in-depth interviews with 30 Taiwanese non-disabled siblings of adults with IDD. Common themes emerged under three lifestages (i.e., minimal caregiver role, anticipating caregiver role, and joint/primary caregiver role), indicating that filial piety remained the core value for Taiwanese families. Taiwanese non-disabled siblings described a love-hate relationship with the adults with IDD. They reported feeling anxious about the lack of discussion with their parents. Finally, they talked about taking care of the adults with IDD as fulfilling filial obligations to their parents. In addition to the sibling subsystem, future researchers and practitioners should take the parental subsystem into account to understand and support non-disabled siblings. [ABSTRACT FROM AUTHOR]

The clinical similarity among different neuropsychiatric disorders (NPDs) suggested a shared genetic basis. We catalogued 23,109 coding de novo mutations (DNMs) from 6511 patients with autism spectrum disorder (ASD), 4,293 undiagnosed developmental disorder (UDD), 933 epileptic encephalopathy (EE), 1022 intellectual disability (ID), 1094 schizophrenia (SCZ), and 3391 controls. We evaluated that putative functional DNMs contribute to 38.11%, 34.40%, 33.31%, 10.98% and 6.91% of patients with ID, EE, UDD, ASD and SCZ, respectively. Consistent with phenotype similarity and heterogeneity in different NPDs, they show different degree of genetic association. Cross-disorder analysis of DNMs prioritized 321 candidate genes (FDR < 0.05) and showed that genes shared in more disorders were more likely to exhibited specific expression pattern, functional pathway, genetic convergence, and genetic intolerance. [ABSTRACT FROM AUTHOR]

Self-harm and suicidal behaviors are prevalent among autistic adults without intellectual disability (ID). Emotion dysregulation (ED), the difficulty in modulating emotions, has been identified as an important risk factor. Dialectical behavior therapy (DBT) has been proved effective to treat ED in disorders other than autism spectrum disorder. Our study aimed at assessing the feasibility, acceptability and preliminary efficacy of DBT in seven autistic adults without ID exhibiting self-harm and/or suicidal behaviors linked to severe ED. Our results suggest that DBT is feasible and highly acceptable to autistic adults without ID. Additionally, mean scores on the Difficulties in Emotion Regulation Scale decreased significantly post-treatment and at 4-month follow-up, suggesting that DBT might be efficacious in reducing ED in this population. [ABSTRACT FROM AUTHOR]

Parenting a child with learning disabilities (LDs) can not only be a fulfilling experience, but also a challenging one which can increase parenting stress as well as impair parenting self-efficacy, parental psychological well-being and interactions with the child. Informed by the parenting three-term causal model and the parenting stress model, the present research explored whether self-forgiveness was inversely associated to these undesirable outcomes in mothers of a child with specific LDs. Mothers' self-forgiveness for perceived failures in dealing with the child's disabilities was expected to be associated with their psychological well-being and their parental behaviors and relation with the child, both directly and indirectly through parenting stress and parenting self-efficacy. The hypothesized direct and indirect associations were assumed to be moderated by partner support. Data were obtained cross-sectionally from 92 mothers (M age = 43) of children (M age = 12) with diagnosed specific LDs. Self-forgiveness, conceived as a bi-dimensional construct, related to greater psychological well-being and to more accepting and less rejecting behaviors toward the child. For the negative dimension of self-forgiveness, these relations were mediated by parenting stress and parenting self-efficacy, whereas for the positive dimension of self-forgiveness the hypothesized mediational model was supported only for mothers who reported poor support from their partner. The implications for programs designed for parents of children with LDs are noted and several avenues for future research are described. Highlights: Studies examining the role of self-forgiveness for parenting failures are missing. We show that self-forgiveness may be beneficial for mothers of children with specific LDs. Self-forgiveness is associated with greater well-being and more accepting behaviors toward the child. The above relations are mediated by parenting stress and parenting self-efficacy. [ABSTRACT FROM AUTHOR]

Self-determination refers to an individual's capacity and opportunities to act as a causal agent in their own lives to make choices, decisions, and set goals. The current study examined self- and parent-reports of the AIR Self-Determination Scale in transition-aged autistic youth (Based on stakeholder preferences, we use identity-first(autistic) or neutral language (on the autism spectrum) (Bottema-Beutel in JAMA 3:18–29, 2020)). Autistic youth completed depression and executive function measures, and parents rated their child's social-communication and executive function difficulties. Despite differences between youth and parent reports, both youth and their parents reported lower self-determination skills (capacity) than opportunities to practice self-determined behaviors. Both depression and executive function skills were related to self-determination capacity, highlighting potential intervention targets for transition-aged youth to facilitate increased self-determination and potentially improved adult outcomes. [ABSTRACT FROM AUTHOR]

The SPARK cohort was established to facilitate recruitment in studies of large numbers of participants with autism spectrum disorder (ASD). Online registration requires participants to have received a lifetime professional diagnosis by health or school providers although diagnoses are not independently verified. This study was set to examine the validity of self- and caregiver-reported autism diagnoses. Electronic medical records (EMR) of 254 SPARK participants (77.6% male, age 10.7 years) were abstracted. Using two different methods, confirmation of ASD diagnosis in EMRs was obtained in 98.8% of cases. Core clinical features recorded in EMRs were typical of autism samples and showed very good agreement with SPARK cohort data, providing further evidence of the validity of clinical information in the SPARK database. [ABSTRACT FROM AUTHOR]

This paper used Social Security Administration program data from 2005 to 2019 to examine national- and state-level changes in the number of new adult supplemental security income (SSI) awardees on the autism spectrum relative to awardees with intellectual disability and other mental health disorders. We identified three main findings: the number of autistic awards increased between 2005 and 2019 when awards for all other mental health disorders declined; roughly nine out of every 10 autistic adult awardees were between ages 18–25 years; there was variation in the growth of autistic awards across states. These findings support the need to consider geographic and age differences in SSI program participation among autistic adults and determine the underlying causes. [ABSTRACT FROM AUTHOR]

Over the past two decades cancer was acknowledged as a new health concern for individuals with an intellectual disability (ID). Despite such recognition, no research in the US has sought to examine the uptake of the cancer-preventing, HPV vaccine in people with ID. Physicians act as powerful recommenders of the HPV vaccine and interact with patients and their caregivers. As such, physicians can provide useful contextual insight into this population's vaccination uptake. The purpose of this study was to examine physicians' experiences of recommending the HPV vaccine to females with an ID. An online open-ended survey was employed. Data were analyzed using inductive content analysis. Forty-nine out of 51 physicians had previously recommended the HPV vaccine to females with an ID. Physicians believed the HPV vaccine was important because of this population's noncompliance with pap smears and risk of sexual abuse. Physicians believed the vaccine was less important for patients who were likely sexually inactive. Physicians generally described parents as uncertain, but receptive of the vaccine. There were a few physicians who implied caregivers believed their child would never be sexually active and therefore were not at risk for contracting HPV. Both physicians and parents (as described by physicians) believed receiving immunizations could be traumatic for this population. In conclusion, physicians were supportive of the HPV vaccine for females with an ID and perceived parents as wanting to protect their child, but uncertain about the vaccine's necessity. Further research is needed to better understand this population's gynecological health care needs. [ABSTRACT FROM AUTHOR]

One of the main objectives for people with intellectual disability (with or without other disabilities) is the ability to perform multistep activities (e.g. preparing a sandwich) without external help from a caregiver. This paper provides a review of studies that evaluated technology systems to teach or support people with intellectual and other disabilities to carry out multistep functional activities through the presentation of single-step instructions. A literature search was performed for English language articles indexed in PubMed, PsycINFO and Web of Science. A narrative synthesis of the articles selected was provided together with a quantitative estimate of the effectiveness of their technology-aided interventions. The latter was carried out via the Percent of Nonoverlapping Data (PND) method. Twenty-six articles met inclusion criteria, with most studies following a single-subject research design (n = 25). The technologies identified were grouped into three categories (self-operated, automatic, and intelligent). Overall, the results are encouraging in that most of the technology solutions reviewed led to positive outcomes in terms of increasing independence of people with intellectual disability in performing relevant multistep activities (average PND score = 96.3%). This review highlights that technology systems designed to present single-step instructions can be effective in teaching or supporting the independent performance of multistep activities by people with intellectual disability with or without other disabilities. Only minimal research exists on development and use of intelligent systems. [ABSTRACT FROM AUTHOR]

Individuals with intellectual and developmental disabilities (IDD) experience much higher rates of forced sexual interactions than non-disabled individuals, with incidence ranges from 44% in children (Ballan in J Autism Dev Disord 42:676-684, 2012; Kvam in Child Abuse Negl 24:1073-1084, 2000; van der Put et al. in J Intellect Disabil Res 58:979-991, 2014) to 83% in adults (Johnson and Sigler in J Fam Violence 15:95-108, 2000). These incidents may be perpetrated by others with disabilities (van der Put et al. in J Intellect Disabil Res 58:979-991, 2014) or, more frequently, by caregivers or others known to the individual. This may be the case because individuals with intellectual and developmental disabilities (IDD)—especially those with very low IQs—tend to receive little by way of sex education. This study assessed parental beliefs of sexuality education needs of children with and without disabilities through an online survey comprised of questions about the parents, their child, and their attitudes about their child’s sexuality. Results showed that parents of children with IDD are less likely to believe their children will have consensual or non-consensual sex before age 18 than parents of children without IDD, but favor sexuality education for their children, with parents preferring to provide it themselves, with the assistance of or through preparation by workshop with a professional. These finding are discussed in the context of implications for intervention and increasing options for sexuality education for learners with IDD. [ABSTRACT FROM AUTHOR]

This study describes the adaptation of the autism diagnostic observation schedule (ADOS-2) to assess autism spectrum disorder (ASD) in adults with intellectual disability (ID) and hearing loss who communicate primarily visually. This adapted ADOS-2 was applied to residents of specialized therapeutic living communities (n = 56). The internal consistency of the adapted ADOS-2 was excellent for the Social Affect of modules 2 and 3 and acceptable for Restricted and Repetitive Behaviors subscale of module 2, but poor for module 3. Interrater reliability was comparable to standard ADOS-2 modules 1–3. Results suggest that autism symptoms of deaf adults with ID can be reliably identified by an adapted ADOS-2, provided adequate expertise in deafness, ID, ASD and proficiency in signed language by the administrator. [ABSTRACT FROM AUTHOR]

Carers of adults on the autism spectrum often experience high levels of stress, worry, and caregiver burden. There are few studies identifying the predictors of carer mental well-being and none have been conducted in Australia. Data from the Autism Cooperative Research Centre for Living with Autism's Australian Longitudinal Study of Autism in Adulthood was used to test the conceptual model by Sonido et al. (Rev J Autism Dev Disord, 2019, https://doi.org/10.1007/s40489-019-00177-8) by (a) identifying the predictors of mental well-being for carers of adults on the spectrum, (b) using model selection to determine which predictors contribute to the model of best fit, and (c) testing for mediating relationships between the predictors. Several predictors were directly associated with carer psychological quality of life, including carer age, care recipient intellectual disability, and carer intolerance of uncertainty. Model selection strongly supported the inclusion of most clusters from the conceptual model. Some mediating relationships were found, such as care recipient depressive behaviours mediating the relationships between caregiver burden and psychological quality of life. Future studies of the conceptual model will improve understanding of the predictors of carer mental well-being and enable tailored interventions to improve the psychological health of carers of adults on the autism spectrum. [ABSTRACT FROM AUTHOR]

Community integration is preferred by people with intellectual and developmental disabilities; community integration is also associated with positive outcomes. Yet, many people with intellectual and developmental disabilities, especially with higher support needs, remain isolated. This exploratory study examined the relationship between community integration, significant support needs, and emergency department utilization of people with intellectual and developmental disabilities (n = 251) by analyzing secondary Personal Outcome Measures® interview data. We found an interaction between community integration and comprehensive behavior support needs, wherein people with intellectual and developmental disabilities with comprehensive behavior support needs who participated in the life of the community had 78% fewer emergency department visits than those people with comprehensive behavior support needs who did not participate in the community. Not only is community integration preferred by people with intellectual and developmental disabilities, our research suggests it can also produce improved health outcomes for those with comprehensive behavior support needs. [ABSTRACT FROM AUTHOR]

Background: A strong therapeutic alliance or working relationship is essential for effective face-to-face family-based psychotherapy. However, little is known about the use of VC on alliance in family-based therapy. The recent COVID-19 pandemic led to a national lockdown during which most family-based therapy transferred to VC. Objective: The current study analyzed the development and strength of alliance prior and during lockdown for multi-stressed families participating in Multisystemic Therapy (MST). Method: Alliance with the therapist was reported monthly by 846 caregivers (81% female). Using latent growth curve models (longitudinal approach), the development of alliance was estimated for families participating in MST prior to the lockdown, transferring to VC early in treatment or late in treatment. Using regression analyses (cross-sectional approach), lockdown (yes/no) was included as predictor of alliance. In these analyses, type of family (regular; intellectual disability; concerns regarding child abuse or neglect) and gender of caregiver were included as moderators. Results: Both analytical approaches showed that alliance was not affected by VC, except for families with concerns of child abuse, who reported lower alliances during lockdown. However, these results where no longer significant when controlling for multiple testing. Conclusions: Strong alliances can be developed and maintained during family-based VC sessions with multi-stressed families. However, for some subgroups, such as families with concerns of child abuse, VC might not be suitable or sufficient. Future research needs to investigate the potential and limitations of using VC with families. [ABSTRACT FROM AUTHOR]

The present study examined which aspects of the child's behavior and clinical profile accounted for three dimensions of parenting stress: related to parenting roles, to interactions with the child, and to the child. Measures of adaptive behavior, intellectual functioning, autism symptom severity, and challenging behavior and emotional difficulties were examined as predictors of parenting stress in 157 mothers of children recently diagnosed with autism. Children's emotional problems and aggressive behavior were most predictive of parenting distress, whereas autism symptoms along with emotional problems and aggressive behavior, respectively, were linked to stress pertaining to interactions and to the child. These findings underscore the need for comprehensive and complementary interventions that focus on children's behavior and symptoms but also on parent adjustment. [ABSTRACT FROM AUTHOR]

The article discusses a study which hypothesizes that people from South Asian backgrounds will have more negative attitudes than White Westerners towards all aspects of the sexuality of people with intellectual disabilities and more positive attitudes towards people with intellectual disabilities becoming parents. It suggests that South Asian and White Western communities have differences in their attitudes towards sexuality in people with intellectual disabilities.

This descriptive study aimed to determine the perspectives of nursing students regarding sexual development of children with intellectual disability. This study was conducted with 455 nursing students at the Faculty of Health Sciences in the Western Black Sea Region of Turkey over the period September–November 2020. Data were collected from the students by e-mail. The instruments used to collect the data were a "Personal Charateristics Form" and the "Perspectives on Sexual Development of Children with Intellectual Disability Questionnaire," which were prepared by the researchers. In this study, 55.4% of the students had previously received training on sexual development and health, and the source of education for 41.5% consisted of the courses taken in their undergraduate program. Of the students, 23.1% did not wish to communicate with children with intellectual disability or their parents about sexual development, 76.9% felt inadequate in their communication with children and parents about sexual development, 46.2% felt they could identify deviations in sexual development in children with intellectual disability, and 81.5% believed that children with intellectual disability were more vulnerable to sexual abuse. The viewpoints of 4th-year students about sexual development of children with intellectual disability were more positive. Sexual development education should be included in the nursing undergraduate curriculum from the first year of the program. [ABSTRACT FROM AUTHOR]

Purpose Work incentives benefits counseling (WIBC) can be a strong facilitator contributing to improved employment outcomes for individuals with intellectual disabilities (ID) by providing information about how income may affect disability benefits eligibility. The purpose of this study is to evaluate the effect of WIBC as a VR intervention to improve on employment outcomes and earnings of transition-age youth and young adults with ID who are Supplemental Security Income benefits recipients using a propensity score matching analysis approach. Propensity score matching using logistic regression analysis and the nearest neighbour method was conducted to equalize the treatment (received WIBC) and control groups (not received WIBC) on the six prominent demographic covariates. The treatment group had higher rates of employment, higher hourly wages than the control group, while the treatment group worked less hours per week than the control group. Methods Propensity score matching using logistic regression analysis and the nearest neighbour method was conducted to equalize the treatment (received WIBC) and control groups (not received WIBC) on the six prominent demographic covariates. Results The treatment group had higher rates of employment, higher hourly wages than the control group, while the treatment group worked less hours per week than the control group. Conclusions Findings of the present study can be used by policy makers, transition specialists, rehabilitation counselors, and other disability service providers to increase employment outcomes and earnings for individuals with ID through WIBC services. Future research and practice implications are provided. [ABSTRACT FROM AUTHOR]

This study examines the psychometric properties of the Autism Diagnostic Interview-Revised (ADI-R) in the context of DSM-5 in a sample of Chinese children. Using re-mapped ADI-R items and algorithms matched to DSM-5 criteria, and administering to children with autism spectrum disorder (ASD) with and without intellectual disability, attention-deficit hyperactivity disorder, and typically developing, it evidenced high sensitivity and specificity. However, similar to DSM-IV algorithm, the DSM-5 algorithms were better at classifying ASD among children with intellectual disability than among those without intellectual disability. With the DSM-5's recognition of the spectrum nature of ASD, the performance of the ADI-R can be improved by having finer gradations in the ADI-R scoring and adding more items on the restricted and repetitve behavior domain. [ABSTRACT FROM AUTHOR]

This study explored the association between intelligence and motor skills in children with ASD after controlling for Attention Deficit and Hyperactivity Disorder (ADHD) and the associations between motor impairment and intellectual disability (ID) in this population. In total, 120 children with ASD (3–16 years; 81.7% boys) completed a standardized intelligence test, the Movement Assessment Battery for Children and Beery–Buktenica Developmental Test of Visual-Motor Integration. Variance in performance IQ was associated with 20.8% of the variance in motor skills while significant associations were found between comorbid ID and motor impairment (ɸ = 0.304). Manual Dexterity and Balance are moderately influenced by performance IQ in children with ASD. Furthermore, presence of ID is also moderately associated with motor impairment in this population. [ABSTRACT FROM AUTHOR]

The transition from adolescence to adulthood may be a challenging period for all young people, yet, for youth with autistic spectrum disorder (ASD) it may present some additional challenges. Developing a more coherent sense of the self, defining one's values and having a sexual awakening are all important processes for the passage from youth to an adult life. People with ASD have difficulties in the aforementioned areas and also face additional risks for sexual exploitation or even abuse. Those challenges underline the importance of sexual education for individuals with ASD. The aim of this case study is to systematically investigate the effectiveness of a behavior analytic intervention in helping an adolescent with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) improve in the area of sexual behavior and at the same time minimize his inappropriate behavior. Specifically: (a) to develop a verbal repertoire pertaining to adolescence and sexuality, (b) to improve personal hygiene skills, (c) to develop or improve self-satisfaction related to sexual expression, (d) to decrease inappropriate behavior pertaining to sexuality, and (e) to train the father to undertake a part of the intervention that would be unethical for the researcher to contact—monitor the participant's masturbation practices. Using a multiple-baseline-across-response-categories experimental design, it was demonstrated that the majority of the aforementioned goals were attained, yet, one goal—the decrease of inappropriate behavior—was only temporarily reached. [ABSTRACT FROM AUTHOR]

The purpose of the study was to determine the acute and long term services and supports (LTSS) utilization, cost of health care and disparities in access of care for individuals with Intellectual and Developmental Disabilities (IDD). Individuals with IDD on a waiver (receiving Medicaid-funded LTSS in community settings) compared to non-IDD individuals on a waiver control group were compared using Ohio Medicaid claims data from calendar year 2013. Results found the IDD Waiver population had lower utilization rates for emergency department visits, hospital admissions, and hospital readmissions within 30 days compared to the Non-IDD Waiver population and lower PMPM expenditures across all medical service categories except pharmacy. However, the IDD Waiver population possessed greater PMPM costs for LTSS and therefore greater overall costs of care. Furthermore, 94% of IDD Waiver individuals had an episode of care for neurological conditions, with the second most frequent episode of care being for mental health services. The two most frequent episodes of care for individuals in the Non-IDD Waiver group were for conditions related to treatment (medical/surgical) and musculoskeletal conditions. The goal of this research was to investigate the health care needs of individuals with IDD that may vary from other long term care populations. The differences in health care needs for individuals with IDD require health systems and care management that is tailored to the sub-population, with an emphasis on treatment for neurological and mental health conditions. The typical focus of care management efforts on reducing unnecessary utilization of hospital services may be less relevant to the IDD Waiver population. The results of this study will be used to make recommendations regarding the unique health care needs of individuals with IDD. [ABSTRACT FROM AUTHOR]

The high prevalence of people with Intellectual Disability (ID) fosters the recognition of their health, work, and social needs. However, few studies have focused on the assessment of their affective and sexual needs (a basic personal need and universal right). Even though the current literature suggests changes in social attitudes toward this population, it is unclear whether these changes have actually occurred and their impact on the development of healthy and non-stigmatized sexuality. This question is particularly relevant due to the lack of a sound measure to assess this shift in the social consideration of the sexuality of people with ID. Thus, this preliminary study focuses on the design and validation of a reliable measure to assess attitudes toward the sexuality of people with Intellectual Disability. This study comprises 1103 participants (43.3% men; 56.7% women) between 20 and 92 years old, classified into three groups: parents or relatives of people with ID, professionals working with ID individuals, and the general population. Results from Exploratory Factor Analysis (EFA) yielded three factors explaining 49.19% of the scale variance: Normalizing Attitudes (NOR-A), Negative Attitudes (NEG-A), and Paternalistic Attitudes (PAT-A). This three-factor structure was subsequently confirmed through Confirmatory Factor Analysis (CFA). Regarding internal consistency, Cronbach's alpha values ranged between 0.66 and 0.86. In conclusion, this research demonstrates that the ASEXID is useful and reliable for the assessment of relatives', professionals', and societal attitudes toward the sexuality of people with ID, contributing to the assessment of a potential paradigm shift in attitudes toward the affective sexual education of people with this condition. [ABSTRACT FROM AUTHOR]

Sexuality expression and experiences are an often-ignored component of health and well-being for adults with intellectual disabilities (ID). Adults with ID have gaps in their sexuality education, and experience restrictions from parents and caregivers exploring their sexuality. However, parental control does not deter adults with ID from desiring sexual experiences, and instead often leads to secretive and potentially exploitative relationships. Although this pattern is clear, we lack an understanding of the impact of parental attitudes on sexuality education and expression for adults with ID. The current study examines parental experiences attending to sexuality education and sexuality expression for adults with ID compared to their typically developing adult siblings. A mixed methods design was used including an online survey with 50 parents nationwide, and follow-up phone/video conferencing interviews with a subset of 20 parents. Findings from this study indicate that parents are more engaged with adults with ID and struggle to determine the appropriate level of sexuality education they should be providing to individuals with ID. Findings add to our understanding of the important role of the parent, and provides insight into training to support parents as they navigate these experiences. [ABSTRACT FROM AUTHOR]

This qualitative study was carried out in order to examine the opinions of mothers on sexual education and development in children with intellectual disability. Participants were drawn from the pool of the mothers of 10–15 year-old children studying in a private education and rehabilitation center in Zonguldak/Turkey between February and June 2019; the sample included 14 mothers who consented to participate in the study. A questionnaire and a semi-structured interview form prepared by the researchers according to literature were used in the study. During the interviews, the mothers were asked questions such as, "How does your child develop sexually in adolescence?" The answers were noted by the both researchers. Content analysis of the data retrieved was performed by the researchers, who identified and interpreted the main themes. The knowledge levels of the mothers concerning the sexual development of their children with intellectual disability were found to be low, and the mothers experienced problems in the management of their children's behaviors and required education on this issue. Providing education about sexual development to both children with intellectual disability as well as their mothers may facilitate more effective management of sexual health concerns in this group of adolescents. [ABSTRACT FROM AUTHOR]

The purpose of this study was to investigate critical independent living skills for adults with intellectual and developmental disabilities who live in the community and common reasons individuals lose their residential placement. Participants included residential specialists from 26 states who worked at small group homes and supported apartments. A paper-based survey was mailed to 1000 randomly selected residential specialists using a proportional stratified sampling procedure; 280 completed surveys were used for data analysis. Descriptive statistics, chi square analyses, and a content analysis procedure were used to analyze the findings. The majority of residential specialists rated 13 skills as critical. Significant differences in perceptions of critical skills emerged based on type of residence (i.e., group home, supported apartment). The most common reasons reported for losing a residential placement were behavior concerns and medical issues. [ABSTRACT FROM AUTHOR]

The article describes the use of evidence-based smoking cessation aids and offered to a population of psychiatric inpatients upon discharge as well as explores factors associated with their uptake. Topics discussed include psychiatric inpatient settings representing an opportunity to initiative the provision of tobacco cessation care to smokers with a mental illness. Also mentioned are most smokers with mental illness taking up a proactive offer of aids to support their stopping smoking.

The occurrence of 'challenging' behavior is commonly documented amongst people with intellectual and developmental disabilities (IDD). Since behavior is not only a form of communication, but often in response to environmental conditions, it stands to reason that one mechanism to reduce 'challenging' behaviors would be to draw attention to people's environmental conditions and well-being, such as people's physical and mental health, and lack of opportunities and exclusion, and by treating people with dignity and respect. This research study aims to explore the relationship between 'challenging' behavior, and dignity and respect, particularly by exploring the role support staff can play in promoting dignity and respect. We had the following research question: what is the relationship between support staff being trained to promote dignity and respect and 'challenging' behaviors? To explore this research question, we analyzed Basic Assurances® and 'challenging' behavior data from 74 human service organizations that supported 6982 unduplicated people with IDD annually. Our findings revealed that, regardless of the agency size or geographic location, when support staff were trained to promote dignity and respect and to recognize each person as a unique individual, the number of 'challenging' behaviors people with IDD exhibited reduced significantly. While not all 'challenging' behavior may be reduced by staff being trained to promote dignity and respect alone, findings from our study suggest this training may be one mechanism to reduce the incidence of 'challenging' behaviors, and by extension, the need for behavior intervention services which can be controversial and costly. [ABSTRACT FROM AUTHOR]

Objectives: Concerns have been raised that parents with intellectual and/or developmental disabilities (IDD) interact with child protective services (CPS) at disproportionate rates than the general population as a result of bias and discrimination. However, there has been little empirical evidence to ascertain if these concerns are grounded. This study's objectives were to identify (a) the prevalence and sociodemographic characteristics of children born to mothers diagnosed with IDD diagnoses, (b) how many of these children interact with CPS (reports and removals) and (c) when these CPS interactions are occurring. Methods: The dataset was comprised of linked administrative birth, hospital discharge, and CPS records for all children born in one U.S. state between 1999 and 2013 (N = 1,271,419). CPS records were available through the first quarter of 2018 and CPS reports and removals at the child's first and fourth birthdays were identified. We conducted chi-square tests and multivariate survival Cox regression models. Results: A total of 567 children were identified as born to mothers with IDD diagnoses, which is 4.5 per 10,000 births. Of these children, 21.7% were the subject of a CPS report within 1 year and 35.8% within 4 years. In terms of removals, 6.5% experienced removals by 1 year and 8.6% by 4 years. Conclusions for Practice: This study provides population-based knowledge about how and when the children born to mothers diagnosed with IDD interact with CPS. These children have higher rates of CPS interactions than the general population, but these rates are not as high as previously reported. [ABSTRACT FROM AUTHOR]