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1.
Augment Altern Commun ; : 1-9, 2024 Oct 03.
Artículo en Inglés | MEDLINE | ID: mdl-39359207

RESUMEN

Appropriate vocabulary selection for augmentative and alternative communication (AAC) intervention is crucial to support communication and language development in children with intellectual and developmental disabilities (IDD). Core vocabulary lists are commonly used to guide this process, and there is a need for language-specific consideration. This paper aimed to develop a wordlist for selecting the core vocabulary for AAC intervention for young Hebrew-speaking children with IDD. Five children (age 3;5-8;4) were audio-recorded in naturalistic interactions with an interviewer and family members. Using Levy's clinical corpus in the Child Language Data Exchange System (CHILDES) and Child Phonology Analyzer (CPA) tools and preestablished codes, wordlists with usage frequencies were extracted and coded for lexeme, lexical categories and functions or content. The percentages of the 20, 50, 100, and 200 most frequent lexemes were calculated for each child and for the five children combined. The top 200 most frequently used lexemes constituted 85% of the composite lexicon. A comparison was made between this study list and a previous list derived from language samples of typically developing (TD). Lexemes representing function words dominated, albeit with a slight preference for content words in children with IDD. Among the content words, children with IDD used more adverbs, while children with TD used more verbs. Implications for AAC core vocabulary are discussed.

2.
Spec Care Dentist ; 2024 Oct 07.
Artículo en Inglés | MEDLINE | ID: mdl-39375902

RESUMEN

INTRODUCTION: Individuals with intellectual and developmental disabilities (IDDs) face numerous challenges in accessing dental care. Despite difficulties, more evidence exploring difficulties among this cohort in India is needed. This study aims to conduct a scoping review of articles published in India exploring access to dental care among individuals with IDD. METHOD: We followed the Arksey O'Malley framework for scoping reviews and the PRISMA guidelines for reporting studies. Findings were analyzed based on Levesque's framework for access. RESULTS: Seventeen articles were collated from five databases. The perceived need for dental care was low, and dental visits were mainly need-based and infrequent. Knowledge regarding dental care did not translate to dental visits. Patient-related barriers were cost, transportation difficulties, fear, lack of dentist skills, patient behavior, and cooperation. From the providers' perspective, most dentists were willing to treat but noted infrastructural and knowledge-based limitations. CONCLUSION: Access to dental care was limited due to infrastructure constraints and a lack of dentist training. Caregivers and individuals with IDD did not prioritize dental health, faced communication barriers, and were afraid of dental procedures. It is important to improve preventive dental care and raise awareness among caregivers of individuals with IDD in India. Training dentists and incorporating special care dentistry into the standard dental curriculum will improve access.

3.
Psychiatr Serv ; : appips20230639, 2024 Sep 11.
Artículo en Inglés | MEDLINE | ID: mdl-39257315

RESUMEN

OBJECTIVE: The authors explored whether neighborhood context is associated with psychotropic polypharmacy and psychotherapy among a cohort of children with high needs for psychiatric and general medical care. METHODS: Electronic health record data from a large health care system were used in a cross-sectional design to examine psychotropic polypharmacy and psychotherapy in 2015-2019 among children ages 2-17 years (N=4,017) with geocoded addresses. Inclusion criteria were a diagnosis of a mental health condition, an intellectual and developmental disability, or a complex medical condition and one or more clinical encounters annually over the study period. Polypharmacy was defined as two or more psychotropic drug class prescriptions concurrently for ≥60 days. Psychotherapy was defined as receipt of any psychotherapy or adaptive behavior treatment. Neighborhood context (health, environment, education, and wealth) was measured with the Child Opportunity Index. Multilevel generalized linear mixed models with random intercept for census tracts were used to assess the associations between individual and neighborhood characteristics and psychotropic polypharmacy and psychotherapy. RESULTS: Moderate (vs. low) child opportunity was associated with higher odds of polypharmacy (adjusted OR [AOR]=1.79, 95% CI=1.19-2.67). High (vs. low) child opportunity was associated with higher odds of psychotherapy (AOR=2.15, 95% CI=1.43-3.21). Black (vs. White) race (AOR=0.51, 95% CI=0.37-0.71) and Hispanic ethnicity (AOR=0.44, 95% CI=0.26-0.73) were associated with lower odds of polypharmacy. CONCLUSIONS: Among high-need children, neighborhood Child Opportunity Index, race, and ethnicity were significantly associated with treatment outcomes in analyses adjusted for clinical factors. The findings underscore concerns about structural disparities and systemic racism and raise questions about access.

4.
Am J Intellect Dev Disabil ; 129(5): 331-345, 2024 Sep 01.
Artículo en Inglés | MEDLINE | ID: mdl-39197849

RESUMEN

Despite a growing number of adults with intellectual and developmental disabilities (IDD) and documented risk for adverse outcomes as they age, little is known about the health and healthcare patterns of adults with different IDD throughout adulthood. This study uses Wisconsin Medicaid claims data to characterize health conditions among adults with IDD. Results indicate high prevalence of asthma, diabetes, heart disease, and hypertension. Heart disease rates were particularly high, having been observed among 39% of autistic adults, 64% of autistic adults with intellectual disability (ID), 67% of adults with Down syndrome, and 75% of adults with ID only. Given there are no known biological differences underlying increased morbidities among most people with IDD, developing inclusive prevention measures should be prioritized in future research.


Asunto(s)
Discapacidades del Desarrollo , Discapacidad Intelectual , Medicaid , Humanos , Estados Unidos/epidemiología , Discapacidad Intelectual/epidemiología , Medicaid/estadística & datos numéricos , Adulto , Discapacidades del Desarrollo/epidemiología , Masculino , Femenino , Persona de Mediana Edad , Enfermedad Crónica/epidemiología , Adulto Joven , Wisconsin/epidemiología , Comorbilidad , Adolescente , Trastorno Autístico/epidemiología , Síndrome de Down/epidemiología , Prevalencia , Diabetes Mellitus/epidemiología , Anciano , Asma/epidemiología , Hipertensión/epidemiología , Cardiopatías/epidemiología
5.
Behav Sci (Basel) ; 14(8)2024 Aug 13.
Artículo en Inglés | MEDLINE | ID: mdl-39199103

RESUMEN

Professionals working with people with intellectual and developmental disability (IDD) can be exposed to challenging behaviors (CBs), which may result in professionals exhibiting emotional reactions that can impact their practices. This study examined these reactions and analyzed how they are influenced by the individual characteristics of people with IDD (gender, age, and level of IDD) and the variables related to CB (type of behavior and its frequency and behavioral function). A total of 125 professionals assessed 293 people with IDD who exhibited CBs. The professionals were asked to complete the Behavior Problems Inventory-Short Form, the Emotional Reactions to Challenging Behavior Scale, and the Questions About Behavior Function measure. It was revealed that positive emotional reactions predominated over negative ones. Significant results were found regarding the level of disability and the age of people with IDD. Emotional reactions were related to the severity of CBs, especially self-injurious and aggressive/destructive behavior, as well as certain behavioral functions. The severity of CBs and the age of people with IDD emerge as key predictors of the emotional reactions of professionals. In short, these reactions vary according to different variables, highlighting the importance of interventions that address professionals' emotional needs.

6.
Disabil Health J ; : 101675, 2024 Jul 31.
Artículo en Inglés | MEDLINE | ID: mdl-39142940

RESUMEN

BACKGROUND: People with developmental disabilities make important contributions to research. However, inaccessible research ethics trainings present a barrier to them taking on some research roles. OBJECTIVES: We developed a social-behavioral research ethics training that leads to certification tailored to the accessibility needs and roles of community research partners with developmental disabilities. METHODS: We collaborated with diverse partners (people with developmental disabilities, a disability service provider, health researchers, human research participant protections experts) to develop the research ethics training. To identify potential training content, we conducted a rapid scoping review of ethical, legal, and social issues in social-behavioral research with adults with developmental disabilities and reviewed national research ethics curricula. Through discussions and a modified Delphi process, we worked with partners to identify content to teach; partners also provided guidance on accessibility. RESULTS: The training and rapid scoping reviews and input from partners resulted in 93 potential educational content elements to include. After completing the modified Delphi process, partners recommended inclusion of 83 of these content elements in the educational training and provided input on depth and approach to teaching this content. Research Ethics for All is a freely available training that includes 5 units, delivered via didactic and active learning, and assessment activities to verify understanding. Research Ethics for All should be facilitated by an experienced researcher. CONCLUSIONS: Research Ethics for All includes foundational social-behavioral research ethics content designed to support community research partners with developmental disabilities to take on new research responsibilities.

7.
Spec Care Dentist ; 2024 Jul 29.
Artículo en Inglés | MEDLINE | ID: mdl-39075774

RESUMEN

BACKGROUND AND AIM: Effective strategies and practices can assist in forming future initiatives and policies to improve oral health for individuals with intellectual and developmental disabilities (IDD). This manuscript aims to describe the Tufts Dental Facilities (TDF), a university-state collaboration providing sustained statewide access to comprehensive oral health care for individuals with IDD. PROGRAM DESCRIPTION: The TDF program was established in 1976 as the result of a class action lawsuit to improve medical and dental care for individuals with IDD residing at state institutions in Massachusetts. TDF, A partnership, between Tufts University School of Dental Medicine (TUSDM) and the Commonwealth of Massachusetts, is a network of seven dental clinics strategically positioned across the state. These clinics are specifically designed to meet the oral health needs of individuals with IDD. TUSDM's oral health providers with expertise in special care dentistry deliver comprehensive oral health care for over 6500 individuals with IDD, incorporating supportive care services and access to general anesthesia. Additionally, the program provides training in special care dentistry for dental residents and pre-doctoral dental students. CONCLUSIONS: Leveraging state and university resources, TDF provides a model of a sustainable, long-term system for statewide access to oral health care for individuals with IDD.

8.
Behav Modif ; : 1454455241262414, 2024 Jul 26.
Artículo en Inglés | MEDLINE | ID: mdl-39056439

RESUMEN

This review evaluated single-case experimental design research that examined challenging behavior interventions utilizing punishment elements. Thirty articles published between 2013 and 2022 met study inclusion criteria. Study quality was also assessed. Through multiple levels of analysis (e.g., descriptive statistics, non-parametric statistics), we examined (a) participant and study trends, (b) differential outcomes related to temporal reinforcement approaches (antecedent, consequent, or combined reinforcement) applied alongside punishment element(s), (c) differential outcomes related to the punishment type (negative, positive) applied alongside reinforcement, and (d) effect sizes associated with study rigor across peer-reviewed and gray literature. Our results may tentatively suggest that, for certain situations, concurrently applying punishment with antecedent reinforcement approaches may coincide with significantly larger effect sizes compared to combined temporal reinforcement approaches, while positive punishment applied concurrently with reinforcement may coincide with larger but non-significant intervention effects. Most featured articles met rigor criteria, but larger effects were seen in peer-reviewed literature.

9.
BMC Public Health ; 24(1): 1705, 2024 Jun 26.
Artículo en Inglés | MEDLINE | ID: mdl-38926810

RESUMEN

BACKGROUND: People with serious mental illness (SMI) and people with intellectual disabilities/developmental disabilities (ID/DD) are at higher risk for COVID-19 and more severe outcomes. We compare a tailored versus general best practice COVID-19 prevention program in group homes (GHs) for people with SMI or ID/DD in Massachusetts (MA). METHODS: A hybrid effectiveness-implementation cluster randomized control trial compared a four-component implementation strategy (Tailored Best Practices: TBP) to dissemination of standard prevention guidelines (General Best-Practices: GBP) in GHs across six MA behavioral health agencies. GBP consisted of standard best practices for preventing COVID-19. TBP included GBP plus four components including: (1) trusted-messenger peer testimonials on benefits of vaccination; (2) motivational interviewing; (3) interactive education on preventive practices; and (4) fidelity feedback dashboards for GHs. Primary implementation outcomes were full COVID-19 vaccination rates (baseline: 1/1/2021-3/31/2021) and fidelity scores (baseline: 5/1/21-7/30/21), at 3-month intervals to 15-month follow-up until October 2022. The primary effectiveness outcome was COVID-19 infection (baseline: 1/1/2021-3/31/2021), measured every 3 months to 15-month follow-up. Cumulative incidence of vaccinations were estimated using Kaplan-Meier curves. Cox frailty models evaluate differences in vaccination uptake and secondary outcomes. Linear mixed models (LMMs) and Poisson generalized linear mixed models (GLMMs) were used to evaluate differences in fidelity scores and incidence of COVID-19 infections. RESULTS: GHs (n=415) were randomized to TBP (n=208) and GBP (n=207) including 3,836 residents (1,041 ID/DD; 2,795 SMI) and 5,538 staff. No differences were found in fidelity scores or COVID-19 incidence rates between TBP and GBP, however TBP had greater acceptability, appropriateness, and feasibility. No overall differences in vaccination rates were found between TBP and GBP. However, among unvaccinated group home residents with mental disabilities, non-White residents achieved full vaccination status at double the rate for TBP (28.6%) compared to GBP (14.4%) at 15 months. Additionally, the impact of TBP on vaccine uptake was over two-times greater for non-White residents compared to non-Hispanic White residents (ratio of HR for TBP between non-White and non-Hispanic White: 2.28, p = 0.03). CONCLUSION: Tailored COVID-19 prevention strategies are beneficial as a feasible and acceptable implementation strategy with the potential to reduce disparities in vaccine acceptance among the subgroup of non-White individuals with mental disabilities. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04726371, 27/01/2021. https://clinicaltrials.gov/study/NCT04726371 .


Asunto(s)
COVID-19 , Hogares para Grupos , Trastornos Mentales , Humanos , COVID-19/prevención & control , COVID-19/epidemiología , Masculino , Femenino , Adulto , Massachusetts , Persona de Mediana Edad , Vacunas contra la COVID-19/administración & dosificación , Discapacidad Intelectual
10.
J Neurodev Disord ; 16(1): 31, 2024 Jun 13.
Artículo en Inglés | MEDLINE | ID: mdl-38872099

RESUMEN

BACKGROUND: Intellectual and developmental disabilities (IDDs) are associated with both cognitive challenges and difficulties in conceptual, social, and practical areas of living, commonly referred to as adaptive behavior (DSM-5). Although cross-sectional associations between intelligence or cognition and adaptive behavior have been reported in IDD populations, no study to date has examined whether developmental changes in cognition contribute to or track with changes in adaptive behavior. The present study sought to examine associations of longitudinal developmental change in domains of cognition (NIH Toolbox Cognition Battery, NIHTB-CB) and adaptive behavior domains (Vineland Adaptive Behavior Scales-3; VABS-3) including Socialization, Communication, and Daily Living Skills (DLS) over a two year period in a large sample of children, adolescents and young adults with IDD. METHODS: Three groups were recruited, including those with fragile X syndrome, Down syndrome, and other/idiopathic intellectual disability. Eligible participants (n = 263) included those who were between 6 and 26 years (mage = 15.52, sd = 5.17) at Visit 1, and who had a diagnosis of, or suspected intellectual disability (ID), including borderline ID, with a mental age of at least 3.0 years. Participants were given cognitive and adaptive behavior assessments at two time points over a two year period (m = 2.45 years, range = 1.27 to 5.56 years). In order to examine the association of developmental change between cognitive and adaptive behavior domains, bivariate latent change score (BLCS) models were fit to compare change in the three cognitive domains measured by the NIHTB-CB (Fluid Cognition, Crystallized Cognition, Total Cognition) and the three adaptive behavior domains measured by the VABS-3 (Communication, DLS, and Socialization). RESULTS: Over a two year period, change in cognition (both Crystallized and Total Composites) was significantly and positively associated with change in daily living skills. Also, baseline cognition level predicted growth in adaptive behavior, however baseline adaptive behavior did not predict growth in cognition in any model. CONCLUSIONS: The present study demonstrated that developmental changes in cognition and adaptive behavior are associated in children and young adults with IDD, indicating the potential for cross-domain effects of intervention. Notably, improvements in DLS emerged as a primary area of adaptive behavior that positively related to improvements in cognition. This work provides evidence for the clinical, "real life" meaningfulness of changes in cognition detected by the NIHTB-CB in IDD, and provides empirical support for the NIHTB-CB as a fit-for-purpose performance-based outcome measure for this population.


Asunto(s)
Adaptación Psicológica , Cognición , Discapacidades del Desarrollo , Discapacidad Intelectual , Humanos , Masculino , Niño , Adolescente , Femenino , Adaptación Psicológica/fisiología , Adulto Joven , Adulto , Cognición/fisiología , Estudios Longitudinales , Actividades Cotidianas , Socialización , Síndrome de Down/fisiopatología , Síndrome del Cromosoma X Frágil/fisiopatología
11.
BMC Med Educ ; 24(1): 491, 2024 May 03.
Artículo en Inglés | MEDLINE | ID: mdl-38702741

RESUMEN

BACKGROUND: Medical trainees (medical students, residents, and fellows) are playing an active role in the development of new curricular initiatives; however, examinations of their advocacy efforts are rarely reported. The purpose of this study was to understand the experiences of trainees advocating for improved medical education on the care of people with intellectual and/or developmental disabilities. METHODS: In 2022-23, the authors conducted an explanatory, sequential, mixed methods study using a constructivist paradigm to analyze the experiences of trainee advocates. They used descriptive statistics to analyze quantitative data collected through surveys. Participant interviews then yielded qualitative data that they examined using team-based deductive and inductive thematic analysis. The authors applied Kern's six-step approach to curriculum development as a framework for analyzing and reporting results. RESULTS: A total of 24 participants completed the surveys, of whom 12 volunteered to be interviewed. Most survey participants were medical students who reported successful advocacy efforts despite administrative challenges. Several themes were identified that mapped to Steps 2, 4, and 5 of the Kern framework: "Utilizing Trainee Feedback" related to Needs Assessment of Targeted Learners (Kern Step 2); "Inclusion" related to Educational Strategies (Kern Step 4); and "Obstacles", "Catalysts", and "Sustainability" related to Curriculum Implementation (Kern Step 5). CONCLUSIONS: Trainee advocates are influencing the development and implementation of medical education related to the care of people with intellectual and/or developmental disabilities. Their successes are influenced by engaged mentors, patient partners, and receptive institutions and their experiences provide a novel insight into the process of trainee-driven curriculum advocacy.


Asunto(s)
Curriculum , Discapacidades del Desarrollo , Discapacidad Intelectual , Humanos , Discapacidades del Desarrollo/terapia , Defensa del Paciente/educación , Estudiantes de Medicina/psicología , Femenino , Masculino , Educación Médica , Internado y Residencia , Encuestas y Cuestionarios
12.
Artículo en Inglés | MEDLINE | ID: mdl-38777582

RESUMEN

BACKGROUND: Children and young people (CYP) with intellectual and developmental disabilities (IDDs) have significant additional educational needs compared with the general population. In England, the government has established a system of education, health and care plans (EHCPs) to support children with special educational needs and disabilities, but disparities exist between the degree of need and the availability of support. We conducted a prospective UK national cohort study (IMAGINE) of children with rare pathogenic genomic variants, all of which are associated with IDD, to investigate associated neuropsychiatric risk. Subsequently, we obtained information from the UK's National Pupil Database on their educational progress through the state school system. We aimed to identify whether they had received EHCP provision and whether that support was associated with their family's socioeconomic status, region of domicile, ethnicity, sex, primary special educational needs (SEN) type, academic performance and mental health well-being. METHODS: We recruited 2738 CYP from England into the IMAGINE study between 2014 and 2019. The educational histories of the participants (6-28 years old, mean ± standard deviation = 14 ± 4 years, 56% male) were obtained from the Department for Education's National Pupil Database in 2021. Educational data included attainment scores from the Early Year Foundation Stage (<5 years) to key stage 4 (15-16 years). Each family was assigned an index of multiple deprivation (IMD) score based on their home address postcode. Parents or carers rated their child's emotional and behavioural adjustment on the Strengths and Difficulties Questionnaire (SDQ). The association between receiving an EHCP and the child's IMD score, eligibility for free school meals, English region of domicile, ethnicity, sex, primary SEN type, academic attainment and SDQ score was investigated. RESULTS: In this cohort, 78% of participants had received an EHCP. CYP living in the most deprived IMD deciles were substantially less likely to receive EHCP support than those in the least deprived decile, irrespective of their degree of intellectual developmental disability, academic performance or associated mental health problems. There were no sex differences. Children of Asian heritage were more likely to have been granted an EHCP than White children from equivalent IMD deciles. There were striking regional disparities. Participants living in London were significantly more likely to have been awarded an EHCP than participants living anywhere else in England, regardless of their IMD decile; those in the least deprived decile had almost 100% EHCP provision. CONCLUSIONS: This study found evidence for nationwide regional inconsistencies in the awarding of EHCP to CYP with significant intellectual impairments of known genetic aetiology. Disparities in funds available to education authorities could be a contributory factor. EHCP support was potentially influenced by how strongly a parent advocates for their child.

13.
Intellect Dev Disabil ; 62(3): 174-185, 2024 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-38802096

RESUMEN

In the United States, direct support professionals (DSPs) support people with intellectual and developmental disabilities (IDD) so they can live in the community. Thirty years of deinstitutionalization and the development of community living options would not have been possible without DSPs. Although life for people with IDD improved greatly, working conditions, wages/benefits, demands, stress/burnout, and trauma experienced by DSPs have worsened. Turnover and vacancy rates threaten the availability of community supports for too many people with IDD. DSPs from diverse racial, ethnic, linguistic, and cultural backgrounds face significant workplace disparities. These issues were discussed during the Research and Training Center on Community Living's 2022 State of the Science Conference. We propose important research questions needing solutions to continue constructively addressing these critical issues.


Asunto(s)
Discapacidades del Desarrollo , Discapacidad Intelectual , Humanos , Discapacidades del Desarrollo/epidemiología , Estados Unidos , Diversidad Cultural , Disparidades en Atención de Salud
14.
Disabil Health J ; 17(3): 101623, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38631971

RESUMEN

BACKGROUND: People with intellectual and developmental disabilities (IDD) in the US, especially those living in group homes, experienced comparatively higher Covid-19 case/case fatality rates than the general population during the first year of the pandemic. There is no information about the patterns of case/case fatality rates during this time. OBJECTIVE: This study compared Covid-19 case/case fatality rates among people with IDD living in residential group homes to the general population across the first year of the pandemic in New York State (NYS). METHODS: Covid-19 positive cases and deaths collected from New York Disability Advocates (NYDA), a coalition of organizations serving individuals with IDD, was compared to data for the NYS general population from the first pandemic year. Case rates/100,000 and case fatality rates were calculated for the study period. Joinpoint Trend Analysis Software was used to analyze patterns in weekly case/case fatality rates. RESULTS: Case fatality rates for people with IDD were higher than for the overall state population throughout the pandemic's first year. Case rates were higher among people with IDD across most of this year. Although the patterns in rates were similar, there was a sharp increase in cases for those with IDD during Fall 2020 beginning eight weeks before the general NYS population and a significant decrease in fatalities in late December 2020 into January 2021. CONCLUSIONS: Consistently higher case fatality rates and significant differences in case/case fatality rates for people with IDD living in group homes require further consideration. Planning for future emergencies will require an enhanced federal/state understanding of the needs of people with IDD and a responsive surveillance system.


Asunto(s)
COVID-19 , Discapacidades del Desarrollo , Personas con Discapacidad , Discapacidad Intelectual , SARS-CoV-2 , Humanos , COVID-19/epidemiología , New York/epidemiología , Discapacidades del Desarrollo/epidemiología , Discapacidad Intelectual/epidemiología , Adulto , Personas con Discapacidad/estadística & datos numéricos , Masculino , Femenino , Persona de Mediana Edad , Pandemias , Hogares para Grupos/estadística & datos numéricos , Anciano , Adulto Joven
15.
J Intellect Disabil ; 28(1): 118-136, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38439515

RESUMEN

The current study examined the impact that the COVID-19 pandemic and resulting restrictions have had on individuals with intellectual and developmental disability. Semi-structured focus groups were conducted to collect data from participants who attended day programming by local community agency. Results indicate that the COVID-19 pandemic and its safety restrictions impacted participants' knowledge of the disease, programming and work, relationships, activities, and emotions in ways that were both similar to and different from other findings in other populations. Implications of these findings for research and practice are discussed.


Asunto(s)
COVID-19 , Discapacidad Intelectual , Adulto , Niño , Humanos , Discapacidades del Desarrollo , Pandemias , Investigación Cualitativa
16.
Healthcare (Basel) ; 12(6)2024 Mar 14.
Artículo en Inglés | MEDLINE | ID: mdl-38540622

RESUMEN

The practice of physical activity, exercise and sport has many benefits for the general population, but studies on the population with intellectual and developmental disabilities (IDD) are scarce and inconclusive. The aim of this systematic review is to analyze the state of the art on the role of physical activity, exercise and sport in the quality of life and well-being of people with IDD, seeking to understand the current panorama in this area and provide answers to these questions. The research was carried out between July and October 2023 using three databases: PubMed, Web of Science and Scopus. Fifteen articles met the eligibility criteria for this study, and these were methodologically assessed using the Downs and Black scale (1998). Higher values were identified in the total quality of life score and some domains of this variable (e.g., personal development, physical well-being and emotional well-being), in satisfaction with life and in the perception of well-being in individuals with IDD who have enjoyed or are involved in physical activity, physical exercise and/or sports programs. Thus, according to the studies included in this systematic review, we can conclude that the practice of physical activity, physical exercise and sport seems to contribute to improving the quality of life and well-being of people with IDD. Despite the growing research interest in this area, there is still a notable lack of studies exploring the impact of these programs, especially sports-based programs, on quality of life and well-being variables in the population under study.

17.
Work ; 77(3): 721-729, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38457138

RESUMEN

BACKGROUND: Customized employment (CE) is recognized in the Workforce Innovation and Opportunity Act (2014) as a strategy for promoting competitive integrated employment. However, the existing body of evidence supporting CE is mainly descriptive rather than experimental research. OBJECTIVE: This study examined the impact of CE on the employment outcomes, hours worked per week, and wages of transition-age youth with intellectual and developmental disabilities. METHOD: The outcomes of transition-age youth participating in a CE intervention were compared to those receiving treatment-as-usual using a randomized controlled trial design. RESULTS: Participants receiving CE were significantly more likely to secure competitive integrated employment than controls who received treatment-as-usual. Participants in the intervention and control conditions earned similar wages. Participants in the control condition worked more hours per week than those in CE. CONCLUSION: The findings from this study demonstrate the effectiveness of CE to assist transition-age youth with intellectual and developmental disabilities in obtaining competitive integrated employment, but future research is needed to examine factors impacting weekly hours and wages of participants in CE.


Asunto(s)
Empleos Subvencionados , Adolescente , Humanos , Discapacidades del Desarrollo , Renta , Rehabilitación Vocacional , Salarios y Beneficios
18.
Cureus ; 16(2): e53613, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38449995

RESUMEN

Adults with intellectual and developmental disabilities (IDD) are increasingly living into adulthood, highlighting the need for adult clinicians to expand their familiarity with congenital conditions. Smith-Lemli-Opitz syndrome (SLOS) is a rare autosomal recessive inborn error of cholesterol synthesis. SLOS is commonly diagnosed in childhood, but a number of adults with IDD progress into adulthood without a formal diagnosis. We present an 18-year-old male with a history of IDD and altered pain sensation who was hospitalized following a self-inflicted knife injury resulting in a traumatic ventricular septal defect. Over the following 15 years, the patient continued to exhibit self-injurious behaviors. At the age of 33, caregivers consented to further work-up of his intellectual disability, and whole-exome genetic sequencing revealed a diagnosis of SLOS. The clinical course of this patient represents a unique presentation of altered pain sensation, a delayed diagnosis of SLOS into adulthood, and the challenges of providing care to an adult with IDD. The case further highlights the importance of understanding the typical workup and management of genetic and congenital conditions arising in childhood.

19.
Autism Res ; 17(2): 280-310, 2024 02.
Artículo en Inglés | MEDLINE | ID: mdl-38334251

RESUMEN

Autistic individuals show substantially reduced benefit from observing visual articulations during audiovisual speech perception, a multisensory integration deficit that is particularly relevant to social communication. This has mostly been studied using simple syllabic or word-level stimuli and it remains unclear how altered lower-level multisensory integration translates to the processing of more complex natural multisensory stimulus environments in autism. Here, functional neuroimaging was used to examine neural correlates of audiovisual gain (AV-gain) in 41 autistic individuals to those of 41 age-matched non-autistic controls when presented with a complex audiovisual narrative. Participants were presented with continuous narration of a story in auditory-alone, visual-alone, and both synchronous and asynchronous audiovisual speech conditions. We hypothesized that previously identified differences in audiovisual speech processing in autism would be characterized by activation differences in brain regions well known to be associated with audiovisual enhancement in neurotypicals. However, our results did not provide evidence for altered processing of auditory alone, visual alone, audiovisual conditions or AV- gain in regions associated with the respective task when comparing activation patterns between groups. Instead, we found that autistic individuals responded with higher activations in mostly frontal regions where the activation to the experimental conditions was below baseline (de-activations) in the control group. These frontal effects were observed in both unisensory and audiovisual conditions, suggesting that these altered activations were not specific to multisensory processing but reflective of more general mechanisms such as an altered disengagement of Default Mode Network processes during the observation of the language stimulus across conditions.


Asunto(s)
Trastorno del Espectro Autista , Trastorno Autístico , Percepción del Habla , Adulto , Niño , Humanos , Percepción del Habla/fisiología , Narración , Percepción Visual/fisiología , Trastorno del Espectro Autista/diagnóstico por imagen , Imagen por Resonancia Magnética , Percepción Auditiva/fisiología , Estimulación Acústica/métodos , Estimulación Luminosa/métodos
20.
Health Serv Res ; 59(3): e14287, 2024 06.
Artículo en Inglés | MEDLINE | ID: mdl-38264862

RESUMEN

OBJECTIVE: Given high rates of un- and underemployment among disabled people, adults with intellectual and developmental disabilities rely on Medicaid, Medicare, or both to pay for healthcare. Many disabled adults are Medicare eligible before the age of 65 but little is known as to why some receive Medicare services while others do not. We described the duration of Medicare enrollment for adults with intellectual and developmental disabilities in 2019 and then compared demographics by enrollment type (Medicare-only, Medicaid-only, dual-enrolled). Additionally, we examined the percent in each enrollment type by state, and differences in enrollment type for those with Down syndrome. DATA SOURCES AND STUDY SETTING: 2019 Medicare and Medicaid claims data for all adults (≥18 years) in the US with claim codes for intellectual disability, Down syndrome, or autism at any time between 2011 and 2019. STUDY DESIGN: Administrative claims cohort. DATA COLLECTION AND ABSTRACTION METHODS: Data were from the Transformed Medicaid Statistical Information System Analytic Files and Medicare Beneficiary Summary files. PRINCIPLE FINDINGS: In 2019, Medicare insured 582,868 adults with identified intellectual disability, autism, or Down syndrome. Of 582,868 Medicare beneficiaries, 149,172 were Medicare only and 433,396 were dual-enrolled. Most Medicare enrollees were enrolled as child dependents (61.5%) Medicaid-only enrollees (N = 819,256) were less likely to be white non-Hispanic (58.5% white non-Hispanic vs. 72.9% white non-Hispanic in dual-enrolled), more likely to be Hispanic (19.6% Hispanic vs. 9.2% Hispanic in dual-enrolled) and were younger (mean 34.2 years vs. 50.5 years dual-enrolled). CONCLUSION: There is heterogeneity in public insurance enrollment which is associated with state and disability type. Action is needed to ensure all are insured in the program that works for their healthcare needs.


Asunto(s)
Discapacidades del Desarrollo , Discapacidad Intelectual , Medicaid , Medicare , Humanos , Estados Unidos , Medicare/estadística & datos numéricos , Medicaid/estadística & datos numéricos , Masculino , Femenino , Persona de Mediana Edad , Adulto , Anciano , Síndrome de Down , Personas con Discapacidad/estadística & datos numéricos , Determinación de la Elegibilidad , Adulto Joven , Revisión de Utilización de Seguros
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