Down syndrome: Parental experiences of a postnatal diagnosis (Journal of Intellectual Disabilities, 14 June 2022)

Globally it is estimated that Down syndrome occurs in 1 in 800 live births (Bull 2020). It has also been estimated that the incidence of Down syndrome occurs in 1/444 live births in the Republic of Ireland. Given the prevalence of Down syndrome births in Ireland and the fact that care is provided by the majority of parents at home, this qualitative study aimed to explore the experiences of Irish parents receiving a postnatal diagnosis of Down syndrome.

View abstract here
OpenAthens username and password required.
Request article here
Register for an OpenAthens here

Social and community inclusion outcomes for adults with autism with and without intellectual disability in Australia (Journal of Intellectual Disability Research, July 2022, Vol. 66 Iss. 7, pps. 655-666)

Research suggests that adults with autism tend to have poor outcomes. Outcomes have mostly been defined using summary outcome ratings, with less focus on specific outcomes such as employment, living situation, social satisfaction, loneliness, and friendships. This study aimed to explore social and community outcomes, including employment, education, living arrangements, friendships, and social satisfaction, for autistic adults with and without intellectual disability.

View abstract here
OpenAthens username and password required.
Request article here
Register for an OpenAthens here

Comparison of unmet health care needs in children with intellectual disability, autism spectrum disorder and both disorders combined Journal of Intellectual Disability Research, July 2022, Vol. 66 Iss. 7, pps. 617-627)

The purpose of this study was to assess the unmet health care needs of children with intellectual disability (ID) compared with children with autism spectrum disorder (ASD) and whether access to health insurance coverage is a contributing factor. Children with ID may be masked in the health care system due to increased diagnosis and awareness of ASD. The needs, unmet needs and insurance coverage of children with ID alone, ASD alone, and co-occurring ID and ASD were assessed in this study.

View abstract here
OpenAthens username and password required.
Request article here
Register for an OpenAthens here

Speech and language therapy services for people with Down syndrome: The disparity between research and practice (Journal of Policy and Practice in Intellectual Disabilities, June 2022, Vol. 19 Iss. 2 pps. 171-182)

The need for speech and language therapy (SLT) for people with Down syndrome (DS) is well documented. However, there is a significant disparity between research and practice. This study addresses two of the three pillars of evidence-based practice by 1) quantitatively profiling some key features of the 2019 public SLT service in Ireland, and referencing this against current best evidence; 2) asking parents, and adults with DS what supports they need in relation to an adequate SLT service. Adults with DS (n = 33) and parents of those with DS (n = 557), completed an anonymous survey online. The function of the survey was to collect information on: SLT service provision; levels of satisfaction with services; and SLT supports required. Based on parent responses, only 44% of participants (n = 253) were offered public SLT services in 2019. The mode waiting time was 1–2 years and the average number of sessions across the age groups was 5 per year. There was a strong association between age and number of sessions. Individual therapy was the most common model of service. A total of 40% of parents reported a 0 level of satisfaction. Seven key themes emerged from the qualitative support data. None of the participating adults received public SLT services in 2019. Our aspiration for evidence-based SLT practice is far from being realized. The average number of sessions reported, does not in any way approximate the intervention intensity specified in evidence-based interventions. Our limited service, at all ages, has detrimental implications for people with DS and our negligible adult service is in breach of human rights. Targeted, strategic investment is needed to allow practice to be aligned with best evidence; to support and treat people with DS effectively; to allow them to reach their maximum potential; and to exercise their right to communicate.

View abstract here
OpenAthens username and password required.
Request article here
Register for an OpenAthens here

Chronicity of challenging behaviors in persons with severe/profound intellectual disabilities who received active treatment during a 20-year period (Journal of Policy and Practice in Intellectual Disabilities, June 2022 Vol. 19 Iss. 2, pps. 162-170)

Evidence of the chronicity of challenging behaviors in individuals with intellectual disabilities (ID) and autism spectrum disorder while receiving active treatment over long periods is limited. Analysis of the chronicity of these behaviors and the corresponding intensity of treatment has important implications for clinical practice and provision of services.

The aim was to examine chronicity of challenging behaviors in individuals with ID receiving residential treatment over a 20-year period addressing the following questions: (1) What is the prevalence of challenging behaviors requiring a Behavior Support Plan (BSP) within the population of the facility during the study? (2) Is there a significant decline in frequency of challenging behaviors of these persons with ID over time? (3) Is there a significant decrease in intensity of intervention targeting challenging behaviors of these persons with ID over time?

“They don’t think I can cope, because I have got a learning disability…”: Experiences of stigma in the lives of parents with learning disabilities (Journal of Applied Research in Intellectual Disabilities, July 2022, Vol. 35 Iss. 4, pps. 935-947)

Parents with learning disabilities report facing a widely held ‘presumption of incompetence’, placing them under pressure to prove their parenting competence. In collaboration with a learning disability theatre company, an inclusive research methodology explored experiences of parenting with learning disabilities, with a specific focus on the operation of stigma in parents’ lives.

View abstract here
OpenAthens username and password required.
Request article here
Register for an OpenAthens here

Supporting people with intellectual disabilities with sexuality and relationships (Journal of Applied Research in Intellectual Disabilities, July 2022, Vol. 35 Iss 4, pps. 919-920)

Supporting people with intellectual disabilities to live their lives in the fullest sense includes supporting people to be sexual, have intimate relationships and express their sexuality and sexual identities. It has been four decades since Ann Craft’s pioneering work on sexuality rights of people with intellectual disabilities began framing this understanding. She challenged the dominant myths and misconceptions that saw the sexual lives of people with intellectual disabilities overlooked, restricted or pathologised. Craft’s work articulated a set of rights that had not been previously named for people with intellectual disabilities that included the right to be seen as an adult, to have relationships, to be safe from abuse, to learn about sexuality and to be able to live a self-determined sexual life that was not shaped by the views attitudes and decisions of others including staff. This ground-breaking work has endured through the Ann Craft Trust which continues to educate, advocate and do research to progress the sexuality rights of people with intellectual disabilities. This special issue is motivated by the need to continue to advocate for these rights to be realities in the lives of people with intellectual disabilities globally.

View abstract here
OpenAthens username and password required.
Request article here
Register for an OpenAthens here