Journal of Policy and Practice in Intellectual Disabilities最新文献

To evaluate the impact of implementing a Developmental Outreach Clinic within a primary care practice, we implemented a Developmental Outreach Clinic that involved relocating 2 developmental pediatricians to a primary care practice for one half day per week to conduct developmental assessments and consultations on-site. This care model included co-location, sharing of: administrative booking process, electronic medical record messaging, and a charting system between the developmental pediatricians and the family physicians. To evaluate this clinic, a retrospective chart review cohort study was conducted. We compared patients who participated in the Developmental Outreach clinic with those who received standard care (i.e., pre-implementation, family physician referred to the hospital-affiliated developmental pediatrics clinic serving the same catchment). Health charts of all patients who were booked for a consultation with Developmental Pediatrics 23 months prior to the implementation of the Developmental Outreach Clinic and 23 months following were reviewed. Main outcome measures included changes in service usage (i.e., number of completed assessments/consultations, time from referral to consult) from pre- to post-clinic implementation. A greater number of non-Autism Spectrum Disorder (ASD) assessments/consultations were completed after implementation of the Developmental Outreach Clinic, with no change in the number of ASD assessments/consultations conducted pre- to post-implementation. The wait time from referral to first appointment was significantly lower for the post-compared to the pre-implementation cohort. A Developmental Outreach Clinic within a primary care practice may help improve access to developmental pediatricians through co-location, including sharing of administrative processes and an Electronic Medical Record. This represents a relatively low-cost way to reduce administrative inefficiencies while enabling specialists to support a greater number of families alongside family physicians.

This research addresses the existing gap in literature concerning the utilization of caregiver personas as a pivotal mediator in tailoring caregiver services and fostering a profound understanding of caregiver experiences. Through their personas, caregivers' struggles attain ontological subjectivity, thereby shaping the services they actively seek. Consequently, comprehending caregiver personas becomes indispensable in directing services towards the root causes of their challenges, rather than merely addressing symptoms resulting from their subjective assessments. The caregiver experience is intrinsically linked to their environmental context, where socioeconomic determinants influence the prioritisation and relevance of the services they require. This study investigates the intricate relationship between caregiver personas, the challenges encountered by caregivers of individuals with intellectual disabilities, and the services they actively pursue. Adopting the WeCare toolkit, we engaged 15 participants, representing three primary caregiver personas (Balanced, Conscious, and Self-Reliant), who took part in caregiver workshops. Subsequent individual interviews were conducted, with the resulting transcripts undergoing thematic analysis and categorisation based on shared themes. The analysis reveals that certain challenges weigh more heavily on specific caregiver personas, exemplified by self-reliant caregivers grappling with an overwhelming sense of involvement in their caregiving roles. Additionally, it was identified that certain challenges remain ubiquitous across all caregivers, irrespective of their personas, such as the shared desire for the independence of their child or ward with intellectual disabilities. Considering these findings, we advocate for further research to delve deeper into the distinctive impacts of caregiver personas on their caregiving experiences. Such exploration will serve to enhance the precision and effectiveness of caregiver support services, ensuring that they are aptly tailored to individual caregiver personas and their specific needs.

People with intellectual disabilities (ID), particularly those with co-existing mental health difficulties, experience health inequalities and premature mortality. Cancer is a prominent cause of mortality, partially due to the difficulties this population faces in accessing screening. This paper explores the rates of colorectal, breast, cervical and prostate screening over a 28-month period within an Enhanced Physical Health Clinic (EPHC) set within a specialist ID psychiatry service in Essex, United Kingdom (UK). We examined completion of, and any barriers to screening among EPHC patients (n = 463), and compared this to population-wide screening data in the UK among people with an ID. The EPHC facilitated support with screening by providing reasonable adjustments, including providing easy-read leaflets or booking appointments. The number of patients eligible for screening was colorectal (n = 83), breast (n = 73), cervical (n = 120) and prostate (n = 50), respectively. In comparison to the population-wide data available for people with ID, successful screening by EPHC patients was significantly higher for colorectal (93% vs. 78%), breast (74% vs. 53%) and cervical screening (40% vs. 31%). While there is no national prostate screening programme to generate comparison figures, 98% of those eligible accessed screening through the EPHC. These results suggest that the EPHC, which operates within a specialist ID psychiatry service in secondary care, is an innovation that may help improve cancer screening rates.

The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, carers, and self-advocates that actively promotes worldwide research and information exchange about intellectual and developmental disabilities. IASSIDD does not speak to the legitimacy or legality of any ongoing war or armed conflict. The purpose of this article is to promote respect for the human dignity of all persons with intellectual and other developmental disabilities, and their families, who find themselves in such situations. Therefore, the aim of this article is to outline the impact that military conflict has upon people with developmental disabilities, and their families, and to introduce the IASSIDD position statement that opposes the human cost from military conflict. During military conflict, many children and adults with intellectual and other developmental disabilities, and their families, experience marked suffering and maltreatment. This occurs due to an inability to access healthcare, education, and rehabilitation, and is also due to serious physical injuries, starvation, psychological trauma, and of course death, caused directly by conflict. This group is disproportionately affected due to preexisting vulnerabilities, and they are likely to experience human rights violations. Challenging behaviour is likely to increase, and quality of life decrease, during conflict. Addressing need during conflict requires a multifaceted approach that includes humanitarian aid, psychological support, social support, rehabilitation services, caregiver support, and coordinated international efforts and advocacy. There has been too little research about the experiences of people with intellectual and other developmental disabilities, and their families, during military conflict. We know little about the number of refugees with intellectual and other developmental disabilities fleeing, nor do we have robust data about the number of people with intellectual and developmental disabilities who die, during military conflict. The basic human rights of people with intellectual and other developmental disabilities, and their families, are violated during military conflict; this is contrary to the United Nations Security Council Resolution 2475 as these rights are enshrined in the United Nations Convention on the Rights of Persons with Disabilities and the United Nations Millennium Goals.