Aleksa Owen

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...

Nominal Group Technique: An accessible and interactive method for conceptualizing the sexual self-advocacy of adults with intellectual and developmental disabilities

People with intellectual and developmental disabilities must often advocate for themselves in many facets of life, including sexuality. Because of this, sexual self-advocacy is an important concept to develop and apply to policy and practice. This paper provides a conceptualization of sexual self-advocacy, a view of sexuality formulated by adults with intellectual and developmental disabilities that is closely tied to the values of the Self-Advocacy Movement. In describing the study process, this paper also puts forth the Participatory Action Research method, Nominal Group Technique, as an accessible method for gaining insight from adults with intellectual and developmental disabilities. The choice of Nominal Group Technique as a research method was motivated by several factors. Nominal Group Technique served to counterbalance many of the potential research difficulties when working with people with intellectual and developmental disabilities, including the need for understandable, inclusive, and participatory ways to access data from people with intellectual and developmental disabilities, and addressed the topic of sexual self-advocacy that is important to people with intellectual and developmental disabilities.

Sexual health in the community: Services for people with intellectual and developmental disabilities

BACKGROUND Sexuality is a central dimension of overall health and well-being. People with intellectual and developmental disabilities (IDD) continue to experience disparities in healthcare, particularly regarding access to sexual health related services. Medicaid Home and Community-Based Services (HCBS) waivers are ideally situated to provide sexual and reproductive healthcare in accessible settings. OBJECTIVE This preliminary study analyzed national Medicaid HCBS waivers to determine how they provide sexuality services for people with IDD. METHODS 111 FY 2015 HCBS 1915(c) waivers for people with IDD from 46 states and the District of Columbia were analyzed to determine which waivers were providing services related to sexuality. Expenditure and utilization data were analyzed to determine service allotment. RESULTS Currently, less than 12% of waivers include any kind of sexuality services, and those services provided are predominantly reactive, rather than proactive. Reactive services focused on interrupting sexually inappropriate behaviors through assessments and plans, intervention and therapy, and supervision. Meanwhile, proactive services promoted the healthy sexuality of people with IDD by providing sexuality education related to sexuality awareness, reproduction, and victimization avoidance. CONCLUSIONS The limited availability of Medicaid HCBS sexuality service provision not only hints at a lack of understanding of sexuality for people with IDD, but also presents an opportunity to perform increased evaluations on current service offerings in order to justify future expanded offerings in other states.

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.

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.