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Sibling relationships often involve exchanges of emotional and tangible support. When one sibling has a disability, the nature of the reciprocity of such support may differ from sibling pairs wherein no disability is present. Specifically, when an individual has autism, the nature of emotional and tangible reciprocity is unclear given the potential for a supportive or caregiving role of the sibling without autism. In this study, 256 adult siblings of autistic individuals completed a national survey. Analyses included descriptive statistics describing the nature of reciprocity and hierarchical regressions to identify the correlates of emotional and tangible reciprocity. Overall, participants often reported not giving or receiving much tangible support to/from their autistic sibling while they often gave and, to some extent received, emotional support from their autistic sibling. When the autistic sibling had more asocial behaviors, participants were more likely to provide emotional support than receive it. When participants engaged in more caregiving, they both gave and received more emotional and tangible support. Implications for research and practice are discussed., (©AAIDD.)

Although services are critical for many transition-aged youth, it is unclear the extent to which autistic youth participate in decisions about their services. By exploring the perceptions of autistic youth about their role in services, interventions can be developed to improve their participation. In this study, we interviewed 43 transition-aged youth with autism to explore their involvement in decisions about services. Most youth reported not being involved in decision making about the types and modalities of disability services. When youth were involved in decisions, the services were often related to education. Although youth reported that their parents typically spearheaded decisions about services, youth also reported that their parents often listened to their input. Implications for research, policy, and practice are discussed., (©AAIDD.)

Lay Abstract: Parents of individuals with autism face many challenges in finding appropriate services and support for their children, and they also play an important role in advocating for their children's rights and needs. Despite the increasing availability of advocacy programs, it is still uncertain how to best encourage parents to advocate for their children. This study explored the connection between parents' knowledge and sense of empowerment, and how these factors relate to three types of advocacy activities (i.e. individual, peer, and systemic). The findings reveal that feeling empowered has a greater impact on advocacy than simply having knowledge. In addition, the study found that individual advocacy correlates to more peer advocacy, which also correlates to more systemic advocacy. These results can help researchers and professionals to better develop programs to increase parent advocacy and, in turn, help improve the lives of individuals with autism.

Although natural supports benefit individuals with intellectual and developmental disabilities (IDD), little is known about natural support provided within specific life domains or how race/ethnicity or support from professionals impacts the extent of natural support one receives. In this study, 518 parents of adults with IDD responded to a national survey about natural supports, including who provides support, the number of supporters, and variables that predict natural supports. Family most often provided support, although professionals and family friends were frequent supporters in several domains. Natural support was most extensive in health, least extensive in employment and housing. Individuals with IDD who regularly participated in daytime activities and/or identified as Black had more extensive natural support. Implications are discussed., (©AAIDD.)

Family navigator programs (i.e., programs to train family navigators) are becoming increasingly common among families of children with autism. Family navigators (i.e., individuals who help families access evaluations and/or services) may be parents of children with autism themselves or health professionals. Extant research has shown that family navigators can help families receive timely diagnostic evaluations and initial services. Yet, the development of family navigator programs is unclear; by exploring the input of families of children with autism, such programs can be responsive to family needs. In this study, we extend the extent literature by exploring the lived experiences of 12 parents of autistic children from low-resourced communities to inform the development of a family navigator program. Findings demonstrated that navigator programs need to prepare navigators to address barriers such as limited knowledge and difficulty accepting an autism diagnosis. Navigator programs should teach navigators to use strategies with families including educating families about services and connecting families with peer support. Program content should reflect direct services, government services, and advocacy strategies. Notably, for true improvements to service access for all autistic children, systemic changes are also needed in the service delivery systems. Implications are discussed., Competing Interests: Ethics and Informed Consent There were no conflicts of interest with this study. All research was approved by the Institutional Review Board. All participants provided informed consent. The authors have no conflict of interest.

Background: Asynchronous telepsychiatry (ATP) consultations are a novel form of psychiatric consultation. Studies comparing patient and provider satisfaction for ATP with that for synchronous telepsychiatry (STP) do not exist. Methods: This mixed-methods study is a secondary analysis of patients' and primary care providers' (PCPs) satisfaction from a randomized clinical trial of ATP compared with STP. Patients and their PCPs completed satisfaction surveys, and provided unstructured feedback about their experiences with either ATP or STP. Differences in patient satisfaction were assessed using mixed-effects logistic regression models, and the qualitative data were analyzed using thematic analysis with an inductive coding framework. Results: Patient satisfaction overall was high with 84% and 97% of respondents at 6 months reported being somewhat or completely satisfied with ATP and STP, respectively. Patients in the STP group were more likely to report being completely satisfied, to recommend the program to a friend, and to report being comfortable with their care compared with ATP (all p < 0.05). However, there was no difference between the patients in ATP and STP in perceived change in clinical outcomes ( p  = 0.51). The PCP quantitative data were small, and thus only summarized descriptively. Conclusions: Patients expressed their overall satisfaction with both STP and ATP. Patients in ATP reported more concerns about the process, likely because feedback after ATP was slower than that after STP consultations. PCPs had no apparent preference for STP or ATP, and reported implementing the psychiatrists' recommendations for both groups when such recommendations were made, which supports our previous findings. Trial Registration: ClinicalTrials.gov NCT02084979; https://clinicaltrials.gov/ct2/show/NCT02084979.

Individuals (families, self-advocates, and practitioners) often advocate for autistic individuals to access services. Yet, there are few systems that accurately measure service access. To discern whether advocacy impacts service access, it is critical to have a measure of services. In this article, we share the development of the Service Inventory-a measure which includes operational definitions and probes of types of services relevant to autistic individuals across the lifespan. We share examples of the Service Inventory so it can be used by students, families, and behavior analysts as they advocate with autistic individuals to access services., Competing Interests: Conflict of Interest On behalf of all authors, the corresponding author states that there is no conflict of interest.

Youth with autism face challenges accessing services as they transition to adulthood. Improving parents' ability to advocate for services on behalf of their youth may be an effective way to improve service access and ultimately transition outcomes in this group. In this study, we tested whether participating in an advocacy intervention improved parents' ability to advocate for services for their transition-aged youth with autism. One hundred and eighty-five parents of youth with autism ages 16-26, recruited across three states in the U.S., were randomized to one of two experimental conditions. The treatment condition received the ASSIST program, a 12-week (24-h) group-based intervention. The control condition received the same written materials as the treatment condition. Primary outcomes for this report-parent advocacy ability-were collected at baseline (prior to randomization) and post-test (immediately after the treatment group finished the 12-week program) by survey. After taking ASSIST, the treatment condition had greater gains than controls in knowledge of adult services (B = -1.62, CI = -2.33 to -0.90) and perceived advocacy skills (B = -0.19, CI = -0.33 to -0.04). Participants who had less knowledge, lower perceived advocacy skills, and less active coping styles at baseline had the greatest treatment gains. Findings suggest that ASSIST is effective in improving parent advocacy ability and may be most beneficial for parents who experience greater challenges advocating for their son/daughter with autism. Future research will examine whether gains in parent advocacy ability leads to improvements in service access and post-school outcomes for transition-age youth with autism., (© 2023 International Society for Autism Research and Wiley Periodicals LLC.)

Systems navigation can be difficult, especially for low-resourced families (i.e., families who are "low income" or meet one of the following indicators: mother has a high school diploma or less; primary caregiver is unemployed; or the family receives governmental assistance). Navigators may help families access services; however, the training of navigators is unclear. The purpose of this study was to determine the effectiveness and feasibility of Supporting Parents to Access and Navigate Services (SPANS), a program to develop navigators. Altogether, 19 low-resourced parents of children with autism participated in SPANS. Participants demonstrated significantly improved knowledge about autism services and perceived advocacy for other families and systemic change. There was high attendance, low attrition, high acceptability, and high fidelity. Implications are discussed., (©AAIDD.)

This qualitative study explored employment experiences and perceived satisfaction of young adults with Down syndrome (DS) who recently exited high school, as reported by their caregivers (n = 101). We analyzed caregivers' open-ended responses about their young adults' type of employment (n = 52 were employed) and identified themes associated with reported satisfaction (for both employed and unemployed). Natural supports were key to caregiver satisfaction; few opportunities for paid, community-based employment and long waiting lists for formal services were related to caregiver dissatisfaction. Job fit (e.g., hours, responsibilities, location), socialization opportunities, and independence were related to caregiver and perceived young adult (dis)satisfaction. These findings highlight unmet service needs, including assistance with finding a job that is the right fit for the individual with DS., (©AAIDD.)

Special education advocacy programs support families to secure services for their children with intellectual and developmental disabilities. Although research demonstrates the efficacy of one such program (the Volunteer Advocacy Project), its effectiveness when replicated by others is unknown. Replication research is critical to ensure that programs can remain effective. The purpose of this study was to explore the adaptation process for two agencies that replicated an advocacy program. Quantitative and qualitative data were collected to examine feasibility, acceptability, and effectiveness. Although it took resources to replicate the advocacy program, agencies reported ongoing implementation would be easier once adaptations were completed. The adapted programs were effective in increasing participants' knowledge, empowerment, advocacy, and insiderness. Implications for research and practice are discussed., Competing Interests: The contents of this manuscript were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number #90RT50320-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this presentation do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government., (©AAIDD.)

Although social groups have "insiders," this construct has not been measured within the disability advocacy community. Examining 405 individuals who applied for an advocacy training program, this study examined the nature of insiderness within the disability advocacy community and ties to individual roles. Participants showed differences in mean ratings across 10 insider items. A principal components analysis revealed two distinct factors: Organizational Involvement and Social Connectedness. Non-school providers scored highest on Organizational Involvement; family members/self-advocates highest on Social Connectedness. Themes from open-ended responses supported the factors and showed differences in motivation and information sources across insiderness levels and roles. Qualitative analysis revealed two additional aspects of insiderness not addressed in the scale. Implications are discussed for future practice and research., (©AAIDD.)

Purpose: Despite the overall benefits of deep brain stimulation (DBS) in Parkinson's disease (PD), its effects on speech production have been mixed when examined using auditory-perceptual and acoustic measures. This study investigated the effects of DBS on the lip and jaw kinematics during sentence production in individuals with dysarthria secondary to PD., Method: Twenty-seven participants from three groups were included in the study: (a) individuals with PD and without DBS (PD group), (b) individuals with PD and with DBS (PD-DBS group), and (c) neurologically healthy control speakers (HC group). Lip and jaw movements during speech were recorded using optical motion capture and analyzed for path distance, speed, duration, articulatory stability, and interarticulator coordination., Results: The PD-DBS group showed (a) increased path distance compared with the PD and HC groups and (b) increased speed compared with the PD group but not the HC group. Both PD and PD-DBS groups exhibited lengthened sentence duration compared with the HC group. Articulatory stability was greater for the two PD groups, PD and PD-DBS, compared with the HC group. Spatial, but not temporal, coordination was lower for the PD group than for the other two groups. The only kinematic changes between the DBS on and off conditions within the PD-DBS group were increases in spatial coordination., Conclusions: These data suggest that DBS primarily affects the amplitude scaling of articulatory movements, but not the temporal scaling, in individuals with PD. The findings are discussed with respect to the DBS-induced neural changes and their effects on speech motor control in PD.

Using telehealth as a mode of service delivery has the potential to address some long-standing challenges in early intervention (EI) services such as waiting lists to access services. Yet, little is known about parent perceptions of telehealth in EI based on their lived experiences partnering with EI practitioners. The purpose of this study was to explore parent perceptions on using telehealth, especially on family-professional partnerships and coaching. Interviews were conducted with 15 parents of children receiving EI services via telehealth from June to August of 2021. Almost half of the participants reflected under-represented racial and ethnic backgrounds. Constant comparative analysis and emergent coding were used for data analysis. The findings showed that the advantages outnumbered the disadvantages regarding telehealth. Participants reported that telehealth provided a safe and flexible option and eliminated the wait to access EI services. However, participants identified some disadvantages to telehealth including telehealth precluded substantive interactions with therapists and limited access to technology. The findings also indicated that telehealth enhanced family-professional partnerships. Nearly all participants valued coaching during telehealth. Participants suggested initial supports to facilitate EI via telehealth, including stable internet access, telehealth training, and an initial in-person visit. Implications for research and practice are discussed., Supplementary Information: The online version contains supplementary material available at 10.1007/s10882-022-09853-w., Competing Interests: Competing InterestsAll authors (W. C. Cheung, J. Aleman-Tovar, A. N. Johnston, L. M. Little, & M. M. Burke) declare that they have no conflict of interest., (© The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature 2022.)

Research related to the developmental disability (DD) community should include collaboration with individuals with DD. Unfortunately, people with DD are infrequently involved in research projects in meaningful ways, and there is little guidance about how to collaborate equitably with researchers with DD. The purpose of this article is to share lessons learned from a collaborative research study among researchers with and without DD using both qualitative and quantitative methods to develop and examine the effectiveness of a civic engagement intervention for transition-aged youth with disabilities. It includes how our research team compensated researchers with DD, clarified team member roles, leveraged the expertise of researchers with DD in using both qualitative and quantitative methods, and integrated technology throughout the research process., (©AAIDD.)

Services are critical for youth with autism spectrum disorder (ASD), especially during the transition to adulthood. Under the best of circumstances, though, it can be difficult to access needed adult services. With COVID-19, services were more difficult to obtain and retain. In this study, we explored parent perceptions of accessing new services and maintaining current services during the first year of the COVID-19 pandemic. Structured interviews were conducted with 65 parents of transition-aged youth (aged 16-26) with ASD living in three states (IL, TN, and WI) in the United States. None of the participants reported receiving new services during the pandemic, and many struggled to access services via online applications. In addition, participants reported that service suspensions and changes in modality (e.g., from in-person to telehealth) were spearheaded by professionals and not families. Participants, especially those in TN, were more likely to pay out-of-pocket for services during the COVID-19 pandemic to compensate for service disruptions. Implications for research and practice are discussed., (©AAIDD.)

Many youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. The present study describes the development, feasibility and acceptability of a new intervention designed to teach parents of transition-aged youth with ASD about the adult service system and the most effective ways to access services and supports. As part of a randomized-controlled trial, the intervention-named ASSIST-was delivered to 91 participants in three states in the U.S. Results suggested that ASSIST is feasible and acceptable to participants. Though intended to be an in-person group-based program, due to COVID-19 restrictions ASSIST was primarily delivered online. Results and discussion explore the trade-offs and implications of these different treatment delivery modalities in relation to ASSIST., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Objectives: To evaluate the epidemiology, presentation and outcomes of patients with chronic periaortitis from 1998 through 2018., Methods: An inception cohort of patients with incident chronic periaortitis from January 1, 1998 through December 31, 2018, in Olmsted County, Minnesota was identified based on comprehensive individual medical record review utilising the Rochester Epidemiology Project medical record linkage system. Inclusion required radiographic and/or histologic confirmation of periarterial soft tissue thickening around at least part of the infra-renal abdominal aorta or the common iliac arteries. Data were collected on demographic characteristics, clinical presentation, renal and radiographic outcomes, and mortality. Incidence rates were age and sex adjusted to the 2010 United States white population., Results: Eleven incident cases of chronic periaortitis were identified during the study period. Average age at diagnosis was 61.8±13.4 years. The cohort included 9 men (82%) and 2 women (18%). Age- and sex-adjusted incidence rates per 100,000 population were 0.26 for females, 1.56 for males and 0.87 overall. Overall prevalence on January 1, 2015 was 8.98 per 100,000 population. Median (IQR) length of follow-up was 10.1 (2.5, 13.8) years. Overall mortality was similar to the expected age, sex, and calendar estimates of the Minnesota population with standardised mortality ratio (95% CI) for the entire cohort 2.07 (0.67, 4.84)., Conclusions: This study reports the first epidemiologic data on chronic periaortitis in the United States. In this cohort of patients with chronic periaortitis, men were 4 times more commonly affected than women. Mortality was not increased compared to the general population.

Lay Abstract: It can be difficult for youth on the autism spectrum to get the services they need after they leave high school. Because of this, many studies have examined the different factors that are related to service access. These studies have shown that youth on the autism spectrum who belong to an underrepresented racial or ethnic group or whose families have lower incomes are less likely to receive the services that they need. However, it is difficult or impossible to change things like race/ethnicity or family income. It is important to also identify factors that might improve service access that we can change. One potential factor that fits into this category is parental advocacy activities. Using data collected from 185 parents of youth on the autism spectrum, we found that more parental advocacy activities were related to youth receiving more services, even after accounting for variables related to the functioning of the youth (e.g. whether they have an intellectual disability, their autism symptom severity) and demographic information about the family (e.g. state in which they live, parental race/ethnicity, and family income). Our findings suggest that building parental advocacy skills may be one important way to increase the number of services that youth on the autism spectrum receive as they transition to adulthood.

Due to systemic barriers, Latinx parents of youth with intellectual and developmental disabilities (IDD) report having limited involvement in transition planning. To facilitate parent involvement in transition planning, it is critical to solicit feedback from Latinx families to inform the content and mode of a transition planning intervention. The purpose of this study was to explore Latinx parents' knowledge and preferred mode for a transition planning intervention. Twenty-eight Latinx parents of transition-aged youth with IDD completed surveys and focus groups. Participants reported wanting an intervention to focus on school-based transition planning and adult services; to a lesser extent, participants wanted information about natural supports. Regarding modality, participants desired in-person or online training (versus a brochure). Implications for research and practice are discussed., (©AAIDD.)

There is limited available research on the post-high school outcomes of young adults with Down syndrome (DS). The purpose of this study, therefore, was to characterize employment, community-based living, and community engagement outcomes and their correlates among young adults with DS who recently transitioned out of high school. Caregivers (n = 100) of young adults with DS who exited high school within the past 5 years completed an online survey. Approximately half of the individuals with DS were working in some capacity; almost all were living with caregivers. Individuals with DS were engaging in a variety of community activities each week. Adaptive functioning was related to both employment and community engagement. Parent involvement in transition planning was also related to community engagement., (©AAIDD.)

Aging family caregivers of adults with intellectual and developmental disabilities (IDD) have unique circumstances setting them apart from the general caregiving population. Such differences include the extensive duration of the caregiving, and health concerns that manifest in the caregiver and individuals with IDD over time. Because of increasing longevity, family caregivers are likely to become compound caregivers (i.e., individuals caregiving for multiple people). Almost 70% of family caregivers of individuals with IDD experience compound caregiving, yet we know very little about compound caregiving. In this article, we highlight the importance of supporting compound caregivers by identifying research issues that address current challenges and future directions. Implications for research are noted, including the need for multidimensional outcome measures and longitudinal studies., (©AAIDD.)

Internationally, parents of children with intellectual and developmental disabilities have historically engaged in advocacy leading to compulsory education for their children. However, few parents have reported civic engagement. Although empowerment is related to parent advocacy, it is unclear whether empowerment relates to civic engagement. Thus, our study examined parent and child correlates of empowerment and civic engagement, and the relation between empowerment and civic engagement among 235 parents of children with intellectual and developmental disabilities across five states in the United States. Gender and special education knowledge were significant correlates of empowerment and civic engagement. There was a significant positive correlation between empowerment and civic engagement. Implications regarding future research and ways to promote parent empowerment and civic engagement are discussed., (© 2021 John Wiley & Sons Ltd.)

Background: There is little literature that has explored the paternal role among children with intellectual disabilities. The aim of the study is to characterise parental attitudes and styles of fathers of children with intellectual disabilities, and to analyse their relation to the children's adaptive behaviour., Method: Eighty-three families (fathers and mothers) answered self-report questionnaires, which assessed parenting styles and attitudes, as well as an adaptive behaviour questionnaire about their children with intellectual disabilities between 4 and 18 years of age., Results: Both parents have a tendency towards an authoritative style of parenting. Fathers (versus mothers) perceive greater parental support but are less involved in their children's lives. Among fathers, the authoritative style was a significant contributor to the child's adaptive behaviour, above and beyond the mother's contribution., Conclusions: Studies about parenting should include both mothers and fathers, as paternal parenting styles and attitudes are related to children's adaptive behaviour., (© 2021 John Wiley & Sons Ltd.)

The objective of this study is to describe the clinical features and outcomes of patients with the newly defined vacuoles, E1 enzyme, X-linked, autoinflammatory, somatic (VEXAS) syndrome. Nine men with somatic mutations in the UBA1 gene were identified; the most frequent variant was p.Met41Thr (7 of 9, 78%). The median age at VEXAS diagnosis was 74 (67, 76.5) years, and patients had a median duration of symptoms for 4 years before diagnosis. Refractory constitutional symptoms (88%), ear and nose chondritis (55%), and inflammatory arthritis (55%) were common clinical features. Vasculitis was noted in 44%. All patients had significantly elevated inflammatory markers and macrocytic anemia. Thrombocytopenia was present in 66% at diagnosis of VEXAS. Eight patients had bone marrow biopsies performed. All bone marrows were hypercellular, and there was vacuolization of the erythroid (100%) or myeloid precursors (75%). Glucocorticoids attenuated symptoms at prednisone doses ≥20 mg per day, but no other immunosuppressive agent showed consistent long-term control of disease. One patient with coexisting plasma-cell myeloma received plasma-cell-directed therapy with improvement of the inflammatory response, which is a novel finding. In conclusion, VEXAS syndrome is a clinically heterogeneous, treatment-refractory inflammatory condition caused by somatic mutation of the UBA1 gene. Patients often present with overlapping rheumatologic manifestations and persistent hematologic abnormalities. As such, internists and subspecialists, including pathologists, should be aware of this condition to avert diagnostic delay, now that the etiology of this syndrome is known., (Copyright © 2021 Mayo Foundation for Medical Education and Research. All rights reserved.)

Family-professional partnership is an essential component of the special education process for children with intellectual and/or developmental disabilities (IDD), including autism spectrum disorder (ASD). Latinx families face systemic barriers when participating in educational decision-making for their children with IDD. Few studies have examined the effectiveness of advocacy trainings among Latinx families of children with IDD, including ASD. The purpose of this pilot study was to examine the effectiveness and feasibility of the Familias Incluidas en Recibiendo Mejor Educación Especial (FIRME), an advocacy program for Latinx families of children with IDD, with respect to increasing special education knowledge, advocacy, empowerment, and receipt of services; and decreasing stress. After completing the FIRME program, participants demonstrated significantly increased: special education knowledge; advocacy; and empowerment., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC part of Springer Nature.)

Background: Although they will often serve as caregivers for their brothers-sisters with intellectual and developmental disabilities (IDD), adult siblings are rarely included in future planning., Method: This study examined 495 American siblings who completed a web-based questionnaire about themselves, their brother-sister with IDD, parents and whether their families completed 11 future planning activities., Results: Although virtually all families completed some future planning, on average, families completed slightly over half of the 11 activities (75% completed eight or fewer). Families more frequently identified a successor to current caregivers and engaged in planning discussions with one another and with the brother-sister; least often, families completed a letter of intent or began securing residential placements. Future planning activities comprised three domains: (1) legal activities, (2) residential activities and (3) family discussions about the future. Variables relating to one or more domains included whether the brother-sister lived in or outside of family home; brother-sister independent living abilities; presence of an intellectual disability; parent caregiving ability; and current sibling caregiving and involvement with the brother-sister with IDD., Conclusions: Although most families engage in some future planning, performance varies widely within and across future planning domains. Future planning involves different considerations and interventions depending on whether one is considering legal, residential or family discussions., (© 2021 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Given the increased longevity of people with intellectual and developmental disabilities (IDD), future planning programs are becoming increasingly common. However, although siblings are likely to fulfill caregiving roles for people with IDD, siblings have not been included in future planning interventions. The purpose of this study was to evaluate the outcomes and feasibility of the Sibling Training for Early future Planning (STEP) program. Using quantitative and qualitative data, 18 siblings of individuals with IDD participated in the study. After completing the STEP program, participants demonstrated significantly improved feelings of empowerment, disability connectedness, family communication, and knowledge of adult disability services. The STEP program was also feasible given high attendance, low attrition rates, and high participant satisfaction. Implications for research and practice are discussed., (©AAIDD.)

Background: As adults with intellectual and developmental disabilities (IDD) have longer lives, parents may remain caregivers into old age. In addition, it is unknown who will fulfil caregiving roles after parents are no longer able to be caregivers. In the current study, we explored the nature (e.g. number of hours of caregiving) and correlates of parental caregiving for their adult offspring with intellectual and developmental disabilities and their future caregiving plans., Method: In the United States, data were collected from 334 parents of adults with intellectual and developmental disabilities via a national survey., Results: Altogether, 55% of the sample spent more than 15 hr conducting caregiving per week. Individual characteristics (e.g. maladaptive behaviour and functional abilities) and parent characteristics (e.g. physical proximity of the adult with intellectual and developmental disabilities and caregiving ability) positively correlated with caregiving hours. Notably, 38.58% of participants were unsure who would fulfil caregiving roles., Conclusion: Implications for research about caregiving and practice are discussed., (© 2020 John Wiley & Sons Ltd.)

Little attention has focused on siblings-in-law, the spouses of siblings of people with disabilities. Using an online survey, 102 siblings-in-law provided information concerning themselves, their spouses, in-law family, and experiences. Overall experiences were rated as positive (51.0%), mixed (34.3%), or negative (14.7%). Compared to respondents with negative outcomes, respondents with positive and mixed outcomes felt being a sibling-in-law more positively impacted their marriage, relationship with in-laws, parenting, desire to advocate, and career. Before marriage, these two groups better understood sibling-in-law responsibilities and reported less worry about marrying into a family with a member with disabilities or having children with disabilities. In open-ended reflections, 1/3 of respondents discussed family dynamics; improving disability knowledge; future planning; and marriage considerations. Practice and research implications are discussed., (©AAIDD.)

Background: Given the increasing lifespans of individuals with intellectual and developmental disabilities (IDD), siblings may fulfil multiple caregiving roles simultaneously for their ageing parents, their offspring, and their brother or sister with IDD. Yet, little is known about compound sibling caregivers. The purpose of this study was to compare the perspectives of compound, single and non-caregiving siblings of adults with IDD., Method: This study investigated 332 adult siblings of individuals with IDD in the United States via a national web-based survey. Participants included: 152 non-caregivers, 94 single caregivers (i.e., caregivers only for their brothers and sisters with IDD), and 86 compound caregivers (i.e., caregivers for their brothers and sisters with IDD and at least one other vulnerable individual)., Results: Single and compound sibling caregivers (versus non-caregivers) had more positive relationships and conducted greater advocacy and future planning activities., Conclusions: Given the potential for compound sibling caregiving, further investigation is warranted., (© 2020 John Wiley & Sons Ltd.)

Because parents face barriers in advocating for their children within the special education system, some families request help from a special education advocate. In this study, we evaluated the perceptions of caregivers who requested advocacy support to understand why, for whom, when, and where the advocacy services were needed; how the advocate helped; and what the outcomes of the advocacy process were and which variables related to better outcomes. We conducted structured interviews with 36 families who had requested help and connected with an advocate over a 3-year period. Compared to national norms, families were more likely to request an advocate if their child had ASD, was in elementary school, and lived in non-rural areas. Family requests were most often for advocate attendance at IEP meetings; help to resolve disagreements with the school concerning supports and services; and information about school services and parental rights. Most advocate assistance was for a short duration, although a longer duration process, advocate attendance at meetings, and more intensive advocate assistance were all related to better outcomes. Most participants were satisfied with the advocate and with the end-result of the advocacy process. Findings are discussed in terms of implications for future research and practice.

Research suggests that child problem behavior and poor family-school partnerships contribute to maternal stress in families of children with autism spectrum disorder (ASD). However, most extant research focuses only on White families even though Latina mothers of children with ASD experience greater systemic barriers impacting parent well-being and access to school services. Using individual interviews, this study investigates the pattern between school perceptions, child behavior, and psychological well-being among 13 Latina mothers of school-aged children with ASD. This sample was selected based on their elevated scores on the Difficult Child subscale of the Parenting Stress Index. Findings indicate that all participants reported feeling fear, frustration, worry and stress due to their child's behavior. Specifically, participants worried about their child's safety and expressed frustration with their child's problem behavior. Notably, participants reported mixed responses regarding the schools' actions to address their children's behavior. Implications for research and practice are discussed with respect to family-school partnerships among Latina mothers., Competing Interests: No potential conflict of interest was reported by the author(s)., (© The British Society of Developmental Disabilities 2020.)

Background: Given decreased formal supports for adults with intellectual and developmental disabilities (IDDs) in many industrialised countries, we need to know more about informal, or natural, supports., Method: Adult siblings (N = 632) responded to a web-based survey about the informal supports received by their brothers/sisters with IDDs., Results: Informal support was organised by the life domains of recreation, employment and housing. Adults with IDDs received the most extensive informal support in recreation and the least extensive in housing; low levels characterised all domains. Individuals with greater numbers of supporters in a domain experienced higher levels of support, as did those residing with family and who received more state-supported, formal benefits., Conclusions: Unpaid, informal supports supplement the support needs of adults with IDDs. Connections between formal and informal supports for adults with IDDs need to be examined further., (© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: Siblings of adults with intellectual and developmental disabilities (IDD) often support their brothers and sisters through caregiving and guardianship., Methods: In this qualitative study, the knowledge and views of 10 adult siblings were explored., Results & Conclusions: The tripartite impact of limited knowledge of guardianship and alternatives, the viewpoint of full guardianship as necessary and the desired/anticipated roles of siblings combined to create the Sibling Reciprocal Effect (SRE). The present authors define SRE as the phenomenon of siblings to recognize the applicability of complementary forms of guardianship for other adults with IDD, but fail to see the advantage of available decision-making alternatives with their own brothers/sisters. Instead, siblings defer to full guardianship as the preferred mechanism for decision making. Implications for practitioners include informing families of the full range of options for supporting persons with IDD in decision making. Future research suggestions include examining the elements of the SRE and siblings' knowledge regarding guardianship and the alternatives., (© 2019 John Wiley & Sons Ltd.)

Background: Internationally, it has been recognised that parents need to advocate for their children with disabilities to receive services. However, many parents find advocacy difficult because of systemic and logistical barriers. As such, parents of children with disabilities may seek a special education advocate to help them understand their child's rights and secure services. Yet little research has been conducted about programmes to develop special education advocates., Methods: In this study, we conducted a comparison study to determine the association of an advocacy programme (i.e. the Volunteer Advocacy Project) on a primary outcome (i.e. special education knowledge) and other outcomes (i.e. family-school partnership, empowerment and parent well-being). Specifically, in 2017, 34 participants, all mothers of children with disabilities, were recruited from disability organisations in the USA. Seventeen mothers participated in the intervention group (i.e. the advocacy training), while 17 mothers participated in the wait list control group. The Volunteer Advocacy Project is a 36 hr advocacy training for individuals to gain instrumental and affective knowledge to advocate for their own children with disabilities and for other families. All participants completed a pre-survey and post-survey; only intervention group participants completed a 6-month follow-up survey., Results: Compared with 17 wait list control group participants, the 17 intervention group participants demonstrated improvements in special education knowledge, P = 0.002, η 2  = 0.32, and self-mastery, P = 0.04, η 2  = 0.15, and decreases in the quality of family-school partnerships, P = 0.002, η 2  = 0.32. At the follow-up survey, intervention group participants demonstrated increases in empowerment, P = 0.04, η 2  = 0.29, and special education knowledge, P = 0.02, η 2  = 0.38., Conclusions: Implications for research including the need for a randomised controlled trial are discussed; also, practitioners need to evaluate advocacy training programmes regarding their effectiveness., (© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Parents often provide the bulk of caregiving supports for their adult offspring with intellectual and developmental disabilities (IDD). Given the longer lives of people with IDD, however, such caregiving roles may transition to siblings. Thus, it is critical to conduct future planning among family members (e.g., parents, siblings) to prepare for the transition of caregiving roles. To this end, we interviewed 10 parent-sibling dyads ( N = 20) of people with IDD about long-term planning. Both parents and siblings reported family-related and systemic barriers to developing future plans. Siblings (unlike parents) reported wanting more communication among family members about planning. Implications for future research and practice are discussed.

The transition from high school to adulthood is difficult for youth with autism spectrum disorder and their families. Recognizing these challenges, there is a small but emerging body of literature testing interventions to improve the transition process. But there are many challenges in performing intervention research that have yet to be fully addressed. We discuss issues that should be considered when conducting interventions with individuals with autism spectrum disorder to improve the transition to adulthood, drawing from our study of a parent training to facilitate access to adult services during the transition years. Issues covered include (1) timing (when is an intervention most effective?), (2) mode of delivery (what is the best way to present information?), (3) outcomes (how can intervention outcomes be accurately measured?), (4) target population (who is the intervention designed to help?), and (5) level of intervention (who should the intervention target?). Our answers, though preliminary, show the need to be flexible, to adopt a trial-and-error stance, and to listen to the needs-both explicit and implicit-of youth with autism spectrum disorder and their parents as they navigate the difficult transition from adolescence to adulthood.

Many siblings anticipate fulfilling caregiving roles for their brothers and sisters with intellectual and developmental disabilities (IDD). Given these roles and the importance of supported decision making, it is crucial to understand how individuals with IDD and their siblings make decisions. Using dyadic interviews, we examined the perspectives of nine sibling dyads ( N = 18) about decision making in relation to self-determination, independent living, and employment. The ages of participants ranged from 19 to 57. Data were analyzed using constant comparative analysis to identify themes. Decision making was characterized by: parents and siblings primarily identifying courses of action; the probability of respective consequences based on the person-environment fit; and the role of the sibling in making the final decision. Characteristics related to the individual with IDD, the family, the sibling, and the environment impacted decision making. Individuals with IDD were more likely to make their own decisions about leisure activities; however, siblings were more likely to make formal decisions for their brothers and sisters.

Background: Parents often face many barriers when taking care of their offspring with disabilities. In childhood, support needs vary with families of children with Down syndrome often reporting less caregiving challenges. However, it is unclear whether support needs vary in adulthood. This study compared parents of adults with Down syndrome (DS), autism spectrum disorder (ASD) and cerebral palsy (CP) regarding support needs of their offspring with intellectual and developmental disabilities (IDD) and their families., Method: Data were collected via a national survey in the United States with 189 parents of adults with IDD., Results: Across the quantitative and qualitative analyses, parents of adults with DS (versus CP and ASD) reported significantly greater recreational, natural supports, more formal services and less future planning barriers., Conclusion: The results indicate that the DS advantage may persist in adulthood regarding support needs. More research is needed to understand different types of support needs., (© 2018 John Wiley & Sons Ltd.)

Compared to White families, Latino families of children with autism spectrum disorder (ASD) face systemic barriers when accessing services for their children. Although there is research about systemic barriers among Latino families, less is known about how Latino and White families differ with respect to special education knowledge, family-school partnerships, and empowerment-key traits to access services. In this study, we examined the differences between 44 White and 55 Latino families of children with ASD with respect to special education knowledge, family-school partnerships, and empowerment; we also examined the correlates of special education knowledge, family-school partnerships, and empowerment. Latino parents reported significantly less special education knowledge and less empowerment compared to White parents; notably, among Latino and White families of children with ASD, there was a significant, positive correlation between empowerment and family-school partnerships. Implications for research and practice are discussed., Competing Interests: No potential conflict of interest was reported by the authors., (©The British Society of Developmental Disabilities 2018.)

Although adult siblings often fulfill caregiving roles for their brothers and sisters with intellectual and developmental disabilities (IDD) and report needing support, little intervention research has been conducted with adult siblings of individuals with IDD. The purpose of this pilot study was to examine the preliminary outcomes of a leadership and support program for adult siblings of individuals with IDD. Pre, post and follow-up survey data indicated that the program correlated with increased sibling connectedness and empowerment. Additionally, the program met sibling expectations with respect to: connectedness, empowerment, and resources. Siblings were highly satisfied with the program. Also, siblings wanted to impact systemic change, especially with respect to the adult service delivery system. Implications for research and practice are discussed., (© The British Society of Developmental Disabilities 2018.)

This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.