"Everyone should at least get a Kia": Policymaker perspectives on equity of Medicaid among transition age autistic youth / Kaitlin H. KOFFER MILLER in Research in Autism Spectrum Disorders, 118 (October 2024)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 118 (October 2024) . - 102482 Titre : "Everyone should at least get a Kia": Policymaker perspectives on equity of Medicaid among transition age autistic youth Type de document : Texte imprimé et/ou numérique Auteurs : Kaitlin H. KOFFER MILLER, Auteur ; Dylan S. COOPER, Auteur ; Sha TAO, Auteur ; David S. MANDELL, Auteur ; Robert I. FIELD, Auteur ; Lindsay L. SHEA, Auteur Article en page(s) : 102482 Langues : Anglais (eng) Mots-clés : Mixed-methods  Disability  Health care financing  Health policy  Medicaid  Autism  Transition Index. décimale : PER Périodiques Résumé : Background This study examined the challenges faced by transition age autistic youth in accessing Medicaid services, considering the historical focus on children in autism research and services. The study aimed to explore Medicaid enrollment and support for this population. Method The study involved Medicaid and Protection & Advocacy (P&A) representatives from states with varying performance levels in eligibility, access, and service use. Discussions with experts focused on waivers, Early, Periodic, Screening, Detection, and Treatment (EPSDT), and barriers to service access. Results The findings highlighted the need to improve service access for transition age autistic youth. States identified the importance of maximizing EPDST utilization before aging out of childhood systems and pursuing waiver enrollment. These insights emphasized the significance of addressing service gaps during the transition to adulthood. Conclusions The study's implications for practice are substantial. Policymakers and service providers must acknowledge the limitedservice access for autistic individuals as they transition from child systems. The study emphasized the value of strategies like maximizing EPDST utilization and pursuing waivers to ensure ongoing support for autistic youth during their transition to adulthood. By addressing these challenges, practitioners can better meet the needs of transition age autistic individuals and facilitate their access to essential services. En ligne : https://doi.org/10.1016/j.rasd.2024.102482 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=540 [article] "Everyone should at least get a Kia": Policymaker perspectives on equity of Medicaid among transition age autistic youth [Texte imprimé et/ou numérique] / Kaitlin H. KOFFER MILLER, Auteur ; Dylan S. COOPER, Auteur ; Sha TAO, Auteur ; David S. MANDELL, Auteur ; Robert I. FIELD, Auteur ; Lindsay L. SHEA, Auteur . - 102482. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 118 (October 2024) . - 102482 Mots-clés : Mixed-methods  Disability  Health care financing  Health policy  Medicaid  Autism  Transition Index. décimale : PER Périodiques Résumé : Background This study examined the challenges faced by transition age autistic youth in accessing Medicaid services, considering the historical focus on children in autism research and services. The study aimed to explore Medicaid enrollment and support for this population. Method The study involved Medicaid and Protection & Advocacy (P&A) representatives from states with varying performance levels in eligibility, access, and service use. Discussions with experts focused on waivers, Early, Periodic, Screening, Detection, and Treatment (EPSDT), and barriers to service access. Results The findings highlighted the need to improve service access for transition age autistic youth. States identified the importance of maximizing EPDST utilization before aging out of childhood systems and pursuing waiver enrollment. These insights emphasized the significance of addressing service gaps during the transition to adulthood. Conclusions The study's implications for practice are substantial. Policymakers and service providers must acknowledge the limitedservice access for autistic individuals as they transition from child systems. The study emphasized the value of strategies like maximizing EPDST utilization and pursuing waivers to ensure ongoing support for autistic youth during their transition to adulthood. By addressing these challenges, practitioners can better meet the needs of transition age autistic individuals and facilitate their access to essential services. En ligne : https://doi.org/10.1016/j.rasd.2024.102482 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=540

Feeling intimidated and uncomfortable: Established and exacerbated educational inequities experienced by black parents of autistic children / Kaitlin H. KOFFER MILLER in Autism Research, 16-5 (May 2023)  

Public ISBD [article]  inAutism Research > 16-5 (May 2023) . - p.1040-1051 Titre : Feeling intimidated and uncomfortable: Established and exacerbated educational inequities experienced by black parents of autistic children Type de document : Texte imprimé et/ou numérique Auteurs : Kaitlin H. KOFFER MILLER, Auteur ; Dylan S. COOPER, Auteur ; Jonas C. VENTIMIGLIA, Auteur ; Lindsay L. SHEA, Auteur Article en page(s) : p.1040-1051 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract There are clear racial disparities that impact the education system. To capture the educational experiences of family members of Black autistic children as compared to white autistic children in the United States (US), a mixed methods design was implemented and included semi-structured interviews with family members of children between the ages of 5-12 who participated in a survey. The survey responses were used as attribute data. Twenty-nine interviews were conducted with parents of school-age autistic children. Findings from this study highlight challenges experienced by parents including education service use and engagement during the COVID-19 pandemic, engaging with school personnel, and securing accommodations. The findings from this study illuminate the disparities experienced by Black parents of autistic children directly reported by the parents themselves in comparison to white parents. The themes elucidated in this study have implications for policy, practice, and research to ensure equity in educational settings for Black autistic students and their families. En ligne : http://dx.doi.org/https://doi.org/10.1002/aur.2919 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=503 [article] Feeling intimidated and uncomfortable: Established and exacerbated educational inequities experienced by black parents of autistic children [Texte imprimé et/ou numérique] / Kaitlin H. KOFFER MILLER, Auteur ; Dylan S. COOPER, Auteur ; Jonas C. VENTIMIGLIA, Auteur ; Lindsay L. SHEA, Auteur . - p.1040-1051. Langues : Anglais (eng) in Autism Research > 16-5 (May 2023) . - p.1040-1051 Index. décimale : PER Périodiques Résumé : Abstract There are clear racial disparities that impact the education system. To capture the educational experiences of family members of Black autistic children as compared to white autistic children in the United States (US), a mixed methods design was implemented and included semi-structured interviews with family members of children between the ages of 5-12 who participated in a survey. The survey responses were used as attribute data. Twenty-nine interviews were conducted with parents of school-age autistic children. Findings from this study highlight challenges experienced by parents including education service use and engagement during the COVID-19 pandemic, engaging with school personnel, and securing accommodations. The findings from this study illuminate the disparities experienced by Black parents of autistic children directly reported by the parents themselves in comparison to white parents. The themes elucidated in this study have implications for policy, practice, and research to ensure equity in educational settings for Black autistic students and their families. En ligne : http://dx.doi.org/https://doi.org/10.1002/aur.2919 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=503

Program experiences of adults with autism, their families, and providers: Findings from a focus group study / Kaitlin H. KOFFER MILLER in Autism, 22-3 (April 2018)  

Public ISBD [article]  inAutism > 22-3 (April 2018) . - p.345-356 Titre : Program experiences of adults with autism, their families, and providers: Findings from a focus group study Type de document : Texte imprimé et/ou numérique Auteurs : Kaitlin H. KOFFER MILLER, Auteur ; M. MATHEW, Auteur ; Stacy L. NONNEMACHER, Auteur ; L. L. SHEA, Auteur Article en page(s) : p.345-356 Langues : Anglais (eng) Mots-clés : Medicaid  adult services  adults  autism spectrum disorder  focus groups  qualitative Index. décimale : PER Périodiques Résumé : A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices. En ligne : http://dx.doi.org/10.1177/1362361316679000 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=358 [article] Program experiences of adults with autism, their families, and providers: Findings from a focus group study [Texte imprimé et/ou numérique] / Kaitlin H. KOFFER MILLER, Auteur ; M. MATHEW, Auteur ; Stacy L. NONNEMACHER, Auteur ; L. L. SHEA, Auteur . - p.345-356. Langues : Anglais (eng) in Autism > 22-3 (April 2018) . - p.345-356 Mots-clés : Medicaid  adult services  adults  autism spectrum disorder  focus groups  qualitative Index. décimale : PER Périodiques Résumé : A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices. En ligne : http://dx.doi.org/10.1177/1362361316679000 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=358

Self-reported service needs and barriers reported by autistic adults: Differences by gender identity / Kaitlin H. KOFFER MILLER in Research in Autism Spectrum Disorders, 92 (April 2022)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 92 (April 2022) . - 101916 Titre : Self-reported service needs and barriers reported by autistic adults: Differences by gender identity Type de document : Texte imprimé et/ou numérique Auteurs : Kaitlin H. KOFFER MILLER, Auteur ; Dylan S. COOPER, Auteur ; Wei SONG, Auteur ; Lindsay L. SHEA, Auteur Article en page(s) : 101916 Langues : Anglais (eng) Mots-clés : ASD  Survey  Service needs  Service barriers  Access  Gender Index. décimale : PER Périodiques Résumé : Background Autism spectrum disorder (ASD) is a lifelong disorder that is diagnosed nearly four times as frequently in men than women. Gender distinctions are evolving beyond traditional man and woman binaries. It remains unclear if and how these distinctions may impact autistic individuals. The goal of this research was to examine reported service needs and barriers to accessing services among autistic adults by gender identity (man, woman, and other gender). Method Data were generated from a statewide needs assessment survey that included quantitative and qualitative data collection that identified the needs of autistic individuals of all ages and their family members and caregivers. Results The results of this study are among the first to document barriers to service access reported by autistic adults across men, women, and other gender adults. This study also found that other gender autistic adults were more likely to report unmet needs for counseling services than autistic men, and both autistic women and other gender adults in this sample reported multiple barriers to receiving needed services as compared to their male counterparts. Conclusions Both women and other gender adults were more likely to report multiple barriers to needed services than men including transportation and scheduling. This study is one of the largest to explore the service barriers of autistic adults by gender differences. En ligne : https://doi.org/10.1016/j.rasd.2022.101916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=458 [article] Self-reported service needs and barriers reported by autistic adults: Differences by gender identity [Texte imprimé et/ou numérique] / Kaitlin H. KOFFER MILLER, Auteur ; Dylan S. COOPER, Auteur ; Wei SONG, Auteur ; Lindsay L. SHEA, Auteur . - 101916. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 92 (April 2022) . - 101916 Mots-clés : ASD  Survey  Service needs  Service barriers  Access  Gender Index. décimale : PER Périodiques Résumé : Background Autism spectrum disorder (ASD) is a lifelong disorder that is diagnosed nearly four times as frequently in men than women. Gender distinctions are evolving beyond traditional man and woman binaries. It remains unclear if and how these distinctions may impact autistic individuals. The goal of this research was to examine reported service needs and barriers to accessing services among autistic adults by gender identity (man, woman, and other gender). Method Data were generated from a statewide needs assessment survey that included quantitative and qualitative data collection that identified the needs of autistic individuals of all ages and their family members and caregivers. Results The results of this study are among the first to document barriers to service access reported by autistic adults across men, women, and other gender adults. This study also found that other gender autistic adults were more likely to report unmet needs for counseling services than autistic men, and both autistic women and other gender adults in this sample reported multiple barriers to receiving needed services as compared to their male counterparts. Conclusions Both women and other gender adults were more likely to report multiple barriers to needed services than men including transportation and scheduling. This study is one of the largest to explore the service barriers of autistic adults by gender differences. En ligne : https://doi.org/10.1016/j.rasd.2022.101916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=458

The Periodic Risk Evaluation: A new tool to link Medicaid-enrolled autistic adults to services and support / Lindsay SHEA in Research in Autism Spectrum Disorders, 98 (October 2022)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 98 (October 2022) . - 102037 Titre : The Periodic Risk Evaluation: A new tool to link Medicaid-enrolled autistic adults to services and support Type de document : Texte imprimé et/ou numérique Auteurs : Lindsay SHEA, Auteur ; Kaitlin H. KOFFER MILLER, Auteur ; Stacy L. NONNEMACHER, Auteur ; Alec BECKER, Auteur ; Pamela TREADWAY, Auteur ; Amy ALFORD, Auteur ; Craig NEWSCHAFFER, Auteur ; Brian K. LEE, Auteur Article en page(s) : 102037 Langues : Anglais (eng) Mots-clés : Autism  Medicaid  Risk  Tool  Adult  Service use Index. décimale : PER Périodiques Résumé : Background The Periodic Risk Evaluation (PRE) is a new questionnaire-based tool to identify autistic adults enrolled in Medicaid programs who are at risk for adverse outcomes including mental health and medical conditions, law enforcement interaction, stressful life events, substance use, presence of natural supports, and suboptimal living conditions. The PRE is completed by direct service providers and informs case conceptualization to drive changes in needed supports. Method The PRE was tested in a sample of 674 autistic adults with a mean age of 31 years across a large, northeastern state. A random forest model was developed to predict complex case status using the PRE items. Sensitivity, specificity, positive predictive value, and negative predictive value for different PRE score cutoffs were evaluated as the performance measures of interest. Expert clinical assessment, the gold standard for case status, identified 131 individuals (19.4 %) as complex cases in need of modified services and supports. Results The final PRE model identified complex cases in unseen data with 75.5 % accuracy, 71.9 % sensitivity, 76.3 % specificity, 41.8 % positive predictive value, and 92.0 % negative predictive value. Conclusions The PRE may be a useful tool for triaging service needs and delivery to adults on the spectrum. The use of the PRE in the Medicaid system is critical because Medicaid is among the only insurers available during the transition to and throughout adulthood for autistic individuals. Adequate planning and assessment of risk can assist direct support staff in triaging and mitigating risk to minimize adverse outcomes. En ligne : https://doi.org/10.1016/j.rasd.2022.102037 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=490 [article] The Periodic Risk Evaluation: A new tool to link Medicaid-enrolled autistic adults to services and support [Texte imprimé et/ou numérique] / Lindsay SHEA, Auteur ; Kaitlin H. KOFFER MILLER, Auteur ; Stacy L. NONNEMACHER, Auteur ; Alec BECKER, Auteur ; Pamela TREADWAY, Auteur ; Amy ALFORD, Auteur ; Craig NEWSCHAFFER, Auteur ; Brian K. LEE, Auteur . - 102037. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 98 (October 2022) . - 102037 Mots-clés : Autism  Medicaid  Risk  Tool  Adult  Service use Index. décimale : PER Périodiques Résumé : Background The Periodic Risk Evaluation (PRE) is a new questionnaire-based tool to identify autistic adults enrolled in Medicaid programs who are at risk for adverse outcomes including mental health and medical conditions, law enforcement interaction, stressful life events, substance use, presence of natural supports, and suboptimal living conditions. The PRE is completed by direct service providers and informs case conceptualization to drive changes in needed supports. Method The PRE was tested in a sample of 674 autistic adults with a mean age of 31 years across a large, northeastern state. A random forest model was developed to predict complex case status using the PRE items. Sensitivity, specificity, positive predictive value, and negative predictive value for different PRE score cutoffs were evaluated as the performance measures of interest. Expert clinical assessment, the gold standard for case status, identified 131 individuals (19.4 %) as complex cases in need of modified services and supports. Results The final PRE model identified complex cases in unseen data with 75.5 % accuracy, 71.9 % sensitivity, 76.3 % specificity, 41.8 % positive predictive value, and 92.0 % negative predictive value. Conclusions The PRE may be a useful tool for triaging service needs and delivery to adults on the spectrum. The use of the PRE in the Medicaid system is critical because Medicaid is among the only insurers available during the transition to and throughout adulthood for autistic individuals. Adequate planning and assessment of risk can assist direct support staff in triaging and mitigating risk to minimize adverse outcomes. En ligne : https://doi.org/10.1016/j.rasd.2022.102037 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=490

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