6 recherche sur le mot-clé 'social services'

Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study / Emily F. FERGUSON in Research in Autism Spectrum Disorders, 119 (January 2025)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 119 (January 2025) . - p.102522 Titre : Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study Type de document : Texte imprimé et/ou numérique Auteurs : Emily F. FERGUSON, Auteur ; Elaine B. CLARKE, Auteur ; Noa SCHISTERMAN, Auteur ; Catherine LORD, Auteur Article en page(s) : p.102522 Langues : Anglais (eng) Mots-clés : Social services  Transition to adulthood  Legal issues  Community participation  Supplemental Social Security Income  Guardianship  Autism Spectrum Disorder Index. décimale : PER Périodiques Résumé : Background Family interactions with the Supplemental Social Security Income (SSI) program and the decision to pursue legal guardianship are poorly understood in services research for autistic adults. Methods We conducted a mixed-methods study and incorporated quantitative survey data from 122 autistic adults in an existing longitudinal cohort with qualitative interviews with 12 autistic adults and/or legal guardians. We explored sociodemographic, developmental, and behavioral features associated with the likelihood of having SSI and a legal guardian at 25 years old. Spoken interviews were transcribed verbatim, and interviews were analyzed using a rapid qualitative analytic approach. Results There were quantitative differences in whether families were able to obtain SSI and guardianship based on intelligence quotient (IQ) scores, adaptive behavior, and autistic characteristics, but not by race, ethnicity, or maternal education. Qualitative data analysis revealed six themes that highlighted the challenges associated with obtaining and maintaining SSI, along with the complex, nuanced decisions associated with legal guardianship. Families noted many challenges in navigating these procedures and some potential benefits for each unique circumstance. Conclusions These findings offer new perspectives on experiences associated with pursuing SSI benefits and legal guardianship for autistic adults, including similarities and key differences in these procedures. Findings also provide suggestions for future research to improve coordination and supports for families throughout adulthood. En ligne : https://dx.doi.org/10.1016/j.rasd.2024.102522 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=545 [article] Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study [Texte imprimé et/ou numérique] / Emily F. FERGUSON, Auteur ; Elaine B. CLARKE, Auteur ; Noa SCHISTERMAN, Auteur ; Catherine LORD, Auteur . - p.102522. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 119 (January 2025) . - p.102522 Mots-clés : Social services  Transition to adulthood  Legal issues  Community participation  Supplemental Social Security Income  Guardianship  Autism Spectrum Disorder Index. décimale : PER Périodiques Résumé : Background Family interactions with the Supplemental Social Security Income (SSI) program and the decision to pursue legal guardianship are poorly understood in services research for autistic adults. Methods We conducted a mixed-methods study and incorporated quantitative survey data from 122 autistic adults in an existing longitudinal cohort with qualitative interviews with 12 autistic adults and/or legal guardians. We explored sociodemographic, developmental, and behavioral features associated with the likelihood of having SSI and a legal guardian at 25 years old. Spoken interviews were transcribed verbatim, and interviews were analyzed using a rapid qualitative analytic approach. Results There were quantitative differences in whether families were able to obtain SSI and guardianship based on intelligence quotient (IQ) scores, adaptive behavior, and autistic characteristics, but not by race, ethnicity, or maternal education. Qualitative data analysis revealed six themes that highlighted the challenges associated with obtaining and maintaining SSI, along with the complex, nuanced decisions associated with legal guardianship. Families noted many challenges in navigating these procedures and some potential benefits for each unique circumstance. Conclusions These findings offer new perspectives on experiences associated with pursuing SSI benefits and legal guardianship for autistic adults, including similarities and key differences in these procedures. Findings also provide suggestions for future research to improve coordination and supports for families throughout adulthood. En ligne : https://dx.doi.org/10.1016/j.rasd.2024.102522 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=545

A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families / V. C. FONG in Autism, 26-2 (February 2022)  

Public ISBD [article]  inAutism > 26-2 (February 2022) . - p.525-537 Titre : A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families Type de document : Texte imprimé et/ou numérique Auteurs : V. C. FONG, Auteur ; B. S. LEE, Auteur ; G. IAROCCI, Auteur Article en page(s) : p.525-537 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  community engagement  education services  family functioning and support  policy  qualitative research  social services  of interest with respect to the research, authorship, and/or publication of this  article. Index. décimale : PER Périodiques Résumé : Perceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents' perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children. En ligne : http://dx.doi.org/10.1177/13623613211034067 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452 [article] A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families [Texte imprimé et/ou numérique] / V. C. FONG, Auteur ; B. S. LEE, Auteur ; G. IAROCCI, Auteur . - p.525-537. Langues : Anglais (eng) in Autism > 26-2 (February 2022) . - p.525-537 Mots-clés : autism spectrum disorders  community engagement  education services  family functioning and support  policy  qualitative research  social services  of interest with respect to the research, authorship, and/or publication of this  article. Index. décimale : PER Périodiques Résumé : Perceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents' perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children. En ligne : http://dx.doi.org/10.1177/13623613211034067 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452

Made to feel different: Families perspectives on external responses to autism and the impacts on family well-being and relationships / Sebastian TREW in Autism, 28-8 (August 2024)  

Public ISBD [article]  inAutism > 28-8 (August 2024) . - p.2120-2139 Titre : Made to feel different: Families perspectives on external responses to autism and the impacts on family well-being and relationships Type de document : Texte imprimé et/ou numérique Auteurs : Sebastian TREW, Auteur Article en page(s) : p.2120-2139 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  environmental factors  family functioning and support  health services  school-age children  social services Index. décimale : PER Périodiques Résumé : This study aimed to investigate the impact of external factors on the experiences and family relationships of autistic adolescents and their families. A qualitative approach was used, with in-depth interviews conducted with 30 participants, including autistic adolescents, siblings and parents from within families with an autistic adolescent family member. The findings suggest that external factors significantly influence the well-being of autistic adolescents and their families. The school environment was identified as a significant factor, with sensory overload, bullying and adverse interactions with teachers having a negative impact on the mental health and quality of family relationships for participants. In addition, the study highlighted that isolation and stigma were major concerns for families, suggesting a need for public efforts to raise awareness and understanding of autism. The lack of appropriate support and services was also identified as a significant challenge that families face. The study highlights the need for person-centred approaches to service provision, which involves including autistic adolescents and their families in the design and delivery of support and services. The study recommends collaboration among schools, service providers, and families, as well as efforts to promote autism-friendly environments in schools and the broader community. Lay abstract The influence of the environment on different groups of people with disabilities has rarely been studied in the context of neurodevelopmental disabilities, such as autism, in adolescence. This study explored how external responses to autism affect the experiences, outcomes and family relationships of autistic adolescents and their family members, including siblings and parents. This study adds to the knowledge of factors that contribute to the social disadvantage and exclusion autistic adolescents and their families face in their communities. Interviews with 30 participants from families with an autistic adolescent show that external factors greatly impact the well-being of autistic adolescents and their families. The school environment, including sensory overload, bullying and negative interactions with teachers, was found to be a key factor that negatively influenced mental health and family relationships. The study also revealed that isolation and stigma are major concerns for families, indicating the importance of public awareness campaigns to increase understanding of autism. In addition, the lack of adequate support and services presented significant challenges for families. The study emphasises the importance of person-centred approaches to providing services, which involve including autistic individuals and their families in designing and delivering support. En ligne : https://dx.doi.org/10.1177/13623613231221684 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=534 [article] Made to feel different: Families perspectives on external responses to autism and the impacts on family well-being and relationships [Texte imprimé et/ou numérique] / Sebastian TREW, Auteur . - p.2120-2139. Langues : Anglais (eng) in Autism > 28-8 (August 2024) . - p.2120-2139 Mots-clés : autism spectrum disorders  environmental factors  family functioning and support  health services  school-age children  social services Index. décimale : PER Périodiques Résumé : This study aimed to investigate the impact of external factors on the experiences and family relationships of autistic adolescents and their families. A qualitative approach was used, with in-depth interviews conducted with 30 participants, including autistic adolescents, siblings and parents from within families with an autistic adolescent family member. The findings suggest that external factors significantly influence the well-being of autistic adolescents and their families. The school environment was identified as a significant factor, with sensory overload, bullying and adverse interactions with teachers having a negative impact on the mental health and quality of family relationships for participants. In addition, the study highlighted that isolation and stigma were major concerns for families, suggesting a need for public efforts to raise awareness and understanding of autism. The lack of appropriate support and services was also identified as a significant challenge that families face. The study highlights the need for person-centred approaches to service provision, which involves including autistic adolescents and their families in the design and delivery of support and services. The study recommends collaboration among schools, service providers, and families, as well as efforts to promote autism-friendly environments in schools and the broader community. Lay abstract The influence of the environment on different groups of people with disabilities has rarely been studied in the context of neurodevelopmental disabilities, such as autism, in adolescence. This study explored how external responses to autism affect the experiences, outcomes and family relationships of autistic adolescents and their family members, including siblings and parents. This study adds to the knowledge of factors that contribute to the social disadvantage and exclusion autistic adolescents and their families face in their communities. Interviews with 30 participants from families with an autistic adolescent show that external factors greatly impact the well-being of autistic adolescents and their families. The school environment, including sensory overload, bullying and negative interactions with teachers, was found to be a key factor that negatively influenced mental health and family relationships. The study also revealed that isolation and stigma are major concerns for families, indicating the importance of public awareness campaigns to increase understanding of autism. In addition, the lack of adequate support and services presented significant challenges for families. The study emphasises the importance of person-centred approaches to providing services, which involve including autistic individuals and their families in designing and delivering support. En ligne : https://dx.doi.org/10.1177/13623613231221684 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=534

Mortality risk among Autistic children and young people: A nationwide birth cohort study / Nicholas BOWDEN ; Sheree GIBB ; Richard AUDAS ; Joanne DACOMBE ; Laurie MCLAY ; Andrew SPORLE ; Hilary STACE ; Barry TAYLOR ; Hiran THABREW ; Reremoana THEODORE ; Jessica TUPOU ; Philip J. SCHLUTER in Autism, 28-9 (September 2024)  

Public ISBD [article]  inAutism > 28-9 (September 2024) . - p.2244-2253 Titre : Mortality risk among Autistic children and young people: A nationwide birth cohort study Type de document : Texte imprimé et/ou numérique Auteurs : Nicholas BOWDEN, Auteur ; Sheree GIBB, Auteur ; Richard AUDAS, Auteur ; Joanne DACOMBE, Auteur ; Laurie MCLAY, Auteur ; Andrew SPORLE, Auteur ; Hilary STACE, Auteur ; Barry TAYLOR, Auteur ; Hiran THABREW, Auteur ; Reremoana THEODORE, Auteur ; Jessica TUPOU, Auteur ; Philip J. SCHLUTER, Auteur Article en page(s) : p.2244-2253 Langues : (en) Mots-clés : adolescents  autism spectrum disorders  health services  medical comorbidity  pre-school children  school-age children  social services Index. décimale : PER Périodiques Résumé : Autism has been associated with increased mortality risk among adult populations, but little is known about the mortality risk among children and young people (0-24?years). We used a 15-year nationwide birth cohort study using linked health and non-health administrative data to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. Time-to-event analysis was used to determine the association between autism and mortality, controlling for sex, age, ethnicity, deprivation and rurality of residence. The participant population included 895,707 children of whom 11,919 (1.4%) were identified as Autistic. Autism was associated with a significantly higher mortality risk (hazard ratio = 2.35; 95% confidence interval = 1.80-3.06) compared to the general population. In addition, using stratified analyses, we found that this risk was significantly higher among females (hazard ratio = 5.40; 95% confidence interval = 3.42-8.52) compared to males (hazard ratio = 1.82; 95% confidence interval = 1.32-2.52). We also determined that among Autistic young people, mortality risk was significantly higher for those with a co-occurring intellectual disability (hazard ratio = 2.02; 95% confidence interval = 1.17-3.46). In this study, autism was associated with higher mortality in children and young people compared to the non-Autistic population. Increased efforts are required to better meet the health needs of this population. Lay abstract Existing literature indicates that Autistic people have shorter life expectancy, but little is known about the mortality risk among Autistic children and young people (0-24?years). We used a 15-year nationwide birth cohort study to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. The study included 895,707 children and 11,919 (1.4%) were Autistic. We found that autism was associated with a significantly higher mortality risk compared to the non-Autistic population. In addition, we found that this risk was significantly higher among females compared to males and for those with a co-occurring intellectual disability. Increased efforts are required to better meet the health needs of this population. En ligne : https://dx.doi.org/10.1177/13623613231224015 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=535 [article] Mortality risk among Autistic children and young people: A nationwide birth cohort study [Texte imprimé et/ou numérique] / Nicholas BOWDEN, Auteur ; Sheree GIBB, Auteur ; Richard AUDAS, Auteur ; Joanne DACOMBE, Auteur ; Laurie MCLAY, Auteur ; Andrew SPORLE, Auteur ; Hilary STACE, Auteur ; Barry TAYLOR, Auteur ; Hiran THABREW, Auteur ; Reremoana THEODORE, Auteur ; Jessica TUPOU, Auteur ; Philip J. SCHLUTER, Auteur . - p.2244-2253. Langues : (en) in Autism > 28-9 (September 2024) . - p.2244-2253 Mots-clés : adolescents  autism spectrum disorders  health services  medical comorbidity  pre-school children  school-age children  social services Index. décimale : PER Périodiques Résumé : Autism has been associated with increased mortality risk among adult populations, but little is known about the mortality risk among children and young people (0-24?years). We used a 15-year nationwide birth cohort study using linked health and non-health administrative data to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. Time-to-event analysis was used to determine the association between autism and mortality, controlling for sex, age, ethnicity, deprivation and rurality of residence. The participant population included 895,707 children of whom 11,919 (1.4%) were identified as Autistic. Autism was associated with a significantly higher mortality risk (hazard ratio = 2.35; 95% confidence interval = 1.80-3.06) compared to the general population. In addition, using stratified analyses, we found that this risk was significantly higher among females (hazard ratio = 5.40; 95% confidence interval = 3.42-8.52) compared to males (hazard ratio = 1.82; 95% confidence interval = 1.32-2.52). We also determined that among Autistic young people, mortality risk was significantly higher for those with a co-occurring intellectual disability (hazard ratio = 2.02; 95% confidence interval = 1.17-3.46). In this study, autism was associated with higher mortality in children and young people compared to the non-Autistic population. Increased efforts are required to better meet the health needs of this population. Lay abstract Existing literature indicates that Autistic people have shorter life expectancy, but little is known about the mortality risk among Autistic children and young people (0-24?years). We used a 15-year nationwide birth cohort study to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. The study included 895,707 children and 11,919 (1.4%) were Autistic. We found that autism was associated with a significantly higher mortality risk compared to the non-Autistic population. In addition, we found that this risk was significantly higher among females compared to males and for those with a co-occurring intellectual disability. Increased efforts are required to better meet the health needs of this population. En ligne : https://dx.doi.org/10.1177/13623613231224015 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=535

Self-reported community participation experiences and preferences of autistic adults / Lindsay L. SHEA in Autism, 25-5 (July 2021)  

Public ISBD [article]  inAutism > 25-5 (July 2021) . - p.1295-1306 Titre : Self-reported community participation experiences and preferences of autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Lindsay L. SHEA, Auteur ; Katherine VERSTREATE, Auteur ; Stacy L. NONNEMACHER, Auteur ; Wei SONG, Auteur ; Mark S. SALZER, Auteur Article en page(s) : p.1295-1306 Langues : Anglais (eng) Mots-clés : Adult  Autism Spectrum Disorder  Autistic Disorder/epidemiology  Community Participation  Humans  Intellectual Disability/epidemiology  Self Report  autism spectrum disorders  quality of life  social services Index. décimale : PER Périodiques Résumé : Although participation in communities is a key component of health and well-being, little research has explored community participation among autistic adults. A better understanding of preferences and access to various community activities among autistic adults provides intervention and policy directions in a critical area. This study reports responses from one of the largest groups of autistic adults surveyed to date. Participants reported their valued activities, number of days they participated in each activity during the previous month, and the extent to which they perceived their participation to be sufficient. Grocery shopping was the most common community activity, and most important. A wide range of activities were participated in during the previous month and more than half of the autistic adults reported that most activities were important. Autistic adults with a co-occurring intellectual disability participated in fewer activities and said that fewer activities were important. Sufficiency, or the degree to which an individual felt they participated enough in important activities, was greater for autistic adults with higher incomes and lower for autistic adults who lived independently or had co-occurring psychiatric diagnoses. Breadth of participation, or the number of important types of participation in the past month, was lower for autistic adults residing in supported living facilities and for autistic adults with co-occurring psychiatric diagnoses. Breadth was greater for autistic adults with self-reported service needs. Our study findings offer important information to guide implementation of new federal requirements aimed at promoting greater community participation among individuals covered by Medicaid. En ligne : http://dx.doi.org/10.1177/1362361320987682 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475 [article] Self-reported community participation experiences and preferences of autistic adults [Texte imprimé et/ou numérique] / Lindsay L. SHEA, Auteur ; Katherine VERSTREATE, Auteur ; Stacy L. NONNEMACHER, Auteur ; Wei SONG, Auteur ; Mark S. SALZER, Auteur . - p.1295-1306. Langues : Anglais (eng) in Autism > 25-5 (July 2021) . - p.1295-1306 Mots-clés : Adult  Autism Spectrum Disorder  Autistic Disorder/epidemiology  Community Participation  Humans  Intellectual Disability/epidemiology  Self Report  autism spectrum disorders  quality of life  social services Index. décimale : PER Périodiques Résumé : Although participation in communities is a key component of health and well-being, little research has explored community participation among autistic adults. A better understanding of preferences and access to various community activities among autistic adults provides intervention and policy directions in a critical area. This study reports responses from one of the largest groups of autistic adults surveyed to date. Participants reported their valued activities, number of days they participated in each activity during the previous month, and the extent to which they perceived their participation to be sufficient. Grocery shopping was the most common community activity, and most important. A wide range of activities were participated in during the previous month and more than half of the autistic adults reported that most activities were important. Autistic adults with a co-occurring intellectual disability participated in fewer activities and said that fewer activities were important. Sufficiency, or the degree to which an individual felt they participated enough in important activities, was greater for autistic adults with higher incomes and lower for autistic adults who lived independently or had co-occurring psychiatric diagnoses. Breadth of participation, or the number of important types of participation in the past month, was lower for autistic adults residing in supported living facilities and for autistic adults with co-occurring psychiatric diagnoses. Breadth was greater for autistic adults with self-reported service needs. Our study findings offer important information to guide implementation of new federal requirements aimed at promoting greater community participation among individuals covered by Medicaid. En ligne : http://dx.doi.org/10.1177/1362361320987682 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475

Self-reported community participation experiences and preferences of autistic adults / Lindsay L. SHEA in Autism, 26-5 (July 2022)  

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