Disability activism and non-invasive prenatal testing: A response to Breimer.

In his recent Comment in IJME, Dr Breimer casts disability advocates as "special interest groups" and pits them against the abstracted concept of "women's autonomy." Against this, we assert that, far from only being a conflict of interest category, disability activism related to prenatal screening and testing is a robust part of bioethical debate and scholarship. Here, we disagree with Dr Breimer's characterisation of Non-invasive Prenatal Testing (NIPT) related disability activism as a threat to women's autonomy and respond to the underlying assumptions of his claims.

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.

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.

Societal and Ethical Impacts of Germline Genome Editing: How Can We Secure Human Rights?

Genome editing has opened up the possibility of heritable alteration of the human germline. The potential of this powerful tool has spurred a call for establishing robust regulatory frameworks to outline permissible uses of genome editing and to map a rational and ethical course. In response, major national scientific bodies and international organizations have convened and released comprehensive reports outlining recommendations for ethical regulatory frameworks.

Correlates of current caregiving among siblings of adults with intellectual and developmental disabilities.

Background: As individuals with intellectual and developmental disabilities (IDD) grow older, siblings are likely to become caregivers for their brothers and sisters with IDD. Thus, it is important to identify the correlates of sibling caregiving to facilitate transitions to caregiving roles.

Method: This study involved the secondary analysis of a national data set of 429 adult siblings of individuals with IDD.

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.

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.

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.

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.