Parental styles and attitudes of fathers of children and adolescents with intellectual disability: Do parental styles and attitudes impact children's adaptive behaviour?

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.

Examining the relation between empowerment and civic engagement among parents of individuals with intellectual and developmental disabilities.

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.

Compound sibling caregivers of individuals with intellectual and developmental disabilities.

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.

Exploring the nature and correlates of caregiving among parents of adults with intellectual and developmental disabilities.

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.

Siblings of adults with intellectual and developmental disabilities: Their knowledge and perspectives on guardianship and its alternatives.

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.

Comparing differences in support needs as perceived by parents of adult offspring with down syndrome, autism spectrum disorder and cerebral palsy.

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.

Disparities in Unmet Service Needs Among Adults with Intellectual and Other Developmental Disabilities.

BACKGROUND: Due to long waiting lists for services, many adults with intellectual and developmental disabilities in the United States have unmet service needs. Little research, however, has identified the characteristics of caregivers and individuals with intellectual and developmental disabilities that relate to the unmet service needs among individuals who are waiting for services. METHOD: The present authors conducted a statewide mail survey of 234 caregivers of individuals with intellectual and developmental disabilities who were waiting for services. The present authors identified which parent and individual with intellectual and developmental disability characteristics were significantly associated with the number of unmet service needs. RESULTS: Individuals with intellectual and developmental disabilities who were in poor health, from minority backgrounds and non-verbal were significantly more likely to have a greater number of unmet service needs. Additionally, individuals with younger caregivers and individuals with caregivers from low-income backgrounds were significantly more likely to report a greater number of unmet service needs. DISCUSSION: Implications for research and policy are discussed.

Understanding Natural Supports in Diverse Adults With Intellectual and Developmental Disabilities Across Life Domains.

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.

Examining the associations among knowledge, empowerment, and advocacy among parents of transition-aged youth with autism.

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.

Exploring the Perspectives of Parents of Individuals with Autism from Low-Resourced Communities to Inform Family Navigator Programs.

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.

Developing the Service Inventory: A System to Gauge the Effect of Advocacy on Service Access.

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.

Exploring Caregiver Perceptions of Post-High School Employment Experiences Among Young Adults With Down Syndrome.

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.

A Tale of Two Adaptations of a Special Education Advocacy Program.

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.

Understanding the Effectiveness and Feasibility of a Family Navigator Program for Parents of Children With Autism.

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.

Applicants to a Special Education Advocacy Training Program: "Insiders" in the Disability Advocacy World.

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.

Improving parents' ability to advocate for services for youth with autism: A randomized clinical trial.

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.

Compound Caregiving: Toward a Research Agenda.

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.

Transition Planning: Knowledge and Preferences of Latinx Families of Youth With Intellectual and Developmental Disabilities.

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.

Post-High School Transition Outcomes for Young Adults With Down Syndrome.

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.

Exploring patterns between school perceptions, child behavior, and maternal well-being among Latina mothers of children with autism spectrum disorder (ASD).

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.