Catherine K. Arnold

Support needs of siblings of people with developmental disabilities.

This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis, interpretation of findings, and discussion using the constant comparison method. Eleven core variables and 3 overarching themes emerged. Three overarching themes for sibling support needs include: (a) getting disability-related information, (b) getting support for their caregiving role, and (c) enhancing the formal support system to address sibling needs.

Self-directed Support: Impact of Hiring Practices on Adults with Intellectual and Developmental Disabilities and Families

The study examined the differential experiences and outcomes for people with intellectual and developmental disabilities and their families receiving self-directed services based on the type of personal support worker hired (parents, siblings, other relatives, friends, and agency staff). The sample consisted of 372 participants in a self-directed waiver program who used personal assistance services. Results indicated that the caregivers satisfaction with the personal support worker, self-efficacy in managing personal support workers, and mental health varied significantly based on type of personal support worker hired. Also, the physical health and daily choice making of the adults with disabilities differed significantly by type of personal support worker hired.

Sibling Advocacy: Perspectives About Advocacy FromSiblings of Individuals With Intellectual and Developmental Disabilities

Abstract As individuals with intellectual and developmental disabilities (IDD) live longer and begin to outlive their parents, siblings take on greater supportive roles including advocacy. Yet, lit...

Individual and Family Correlates of Community Living Options Among Adults With Intellectual and Developmental Disabilities

Abstract With recent policy changes and case-law decisions, there are more opportunities for adults with intellectual and developmental disabilities (IDD) to live independently in inclusive settings. It is necessary to identify malleable correlates of community living options to develop interventions to increase inclusive, independent living. To this end, 546 parents and siblings of adults with IDD responded to a national survey. According to parent and sibling report, adults with IDD were more likely to live outside of the family home when the family engaged in future planning, the individual had more informal supports and more functional abilities and had parents with fewer caregiving abilities. Among the 187 adults with IDD who lived outside of the family home, individuals with more problem behaviors and fewer functional abilities were more likely to live in larger group homes (versus independently with or without supports). Further, when the family engaged in more future planning activities, adults wi...

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.

Identifying the Correlates and Barriers of Future Planning Among Parents of Individuals With Intellectual and Developmental Disabilities

Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals with IDD responded to a national, web-based survey. Participants who were older, more educated, attended more parent training and support activities, and had children with fewer functional abilities, were more likely to engage in future planning. Reported barriers to future planning included: (a) lack of available services, (b) financial challenges, (c) reluctance of family members, (d) lack of time, (e) the emotional nature of future planning, (f) inertia, and (g) a lack of family members to be caregivers. Implications for policy, practice, and future research are discussed.

Caregiving Experiences and Outcomes: Wellness of Adult Siblings of People with Intellectual Disabilities

Purpose of ReviewThe goal of this paper is to explore the wellness of adult siblings of people with intellectual disabilities (ID) related to caregiving experiences and outcomes, supports for siblings, gaps in the literature, and future directions to advance research in this area.Recent FindingsFindings are shared from the literature on caregiver experiences of adult siblings of people with ID with a specific focus on outcomes related to wellness. Overall, siblings of people with IDD have positive outcomes in childhood while increased anxiety may happen in adolescence; outcomes for adults are mixed and need greater exploration.SummaryFirst five outcome areas are described related to wellness of adult siblings of people with ID: (1) impact on health and well-being, (2) financial impact, (3) cultural context, (4) sibling relationship quality, and (5) future caregiving. Secondly, supports that enhance wellness for siblings of adults with ID are discussed including peer/emotional support and knowledge of services and supports. Thirdly, gaps are identified and critiqued with ideas shared about ways to address the gaps in future studies such as investing in interventions that include and target adult siblings of people with ID to enhance wellness. Finally, future directions are proposed to advance sibling disability research in order to improve the wellness of adult siblings of people with ID and their families, including the value of doing research with a Disability Studies perspective.

The Perceptions of Professionals Toward Siblings of Individuals With Intellectual and Developmental Disabilities

Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.