The Disability Royal Commission (the Commission) investigated many issues, one of which was whether people with cognitive disabilities, including people with intellectual disabilities, faced systemic neglect in the Australian health system. Using a method of co-design with people with intellectual disabilities, we analysed the Commission's approach and recommendations about preventive health care. We identified how the Commission's recommendations can inform the achievement of the National Preventive Health Strategy (the Strategy) for people with intellectual disabilities. We found that a strength of the Commission's process was the multiple ways it inquired about the experience of accessing preventive health care. However, the inclusiveness of the invitations to participate in the Commission's work and the location of the public hearings were limitations for key stakeholders. Our analysis also noted that the Commission's public hearings focused on the supply side of healthcare access (health services) compared to the demand side of access (health users). This was a missed opportunity to learn from health users about their experiences. Two challenges to the implementation of the recommendations include the focus on cognitive disability instead of intellectual disability, and the focus on health care in general, rather than specifically on preventive health care. We also found that the Commission's recommendations mainly relate to the leadership, governance and funding elements in the Strategy, with a few actions relevant to prevention, partnerships, information, research, surveillance and preparedness. It is important that all the elements required to mobilise prevention systems are considered and actioned to achieve the Strategy.

The Australian Centre for Health, Independence, Economic participation and Value Enhanced care for adolescents and young adults with Cerebral Palsy (CP-ACHIEVE) is a Centre of Research Excellence (CRE), funded for 5-year by the National Health and Medical Research Council of Australia. The vision of CP-ACHIEVE is an Australia where people with cerebral palsy receive excellent healthcare throughout their lives and live in, and contribute to, supportive communities that welcome and enable their participation. CP-ACHIEVE began with the ethical commitment to bring together people with lived experience of cerebral palsy, researchers, and health professionals to develop and conduct research informed by, and relevant to, people with cerebral palsy and their allies. From inception, co-research and collaboration with (not 'to' or 'about') young people with cerebral palsy (10 to 30 years of age) and their families has been central to our work. In this paper, we describe the CP-ACHIEVE values, structure and strategy for this approach, and its implementation at each stage of the research process. We then provide an example of the strategy in action, using a qualitative exploration of CP-ACHIEVE's Participation Theme team's experiences of collaboration and involvement as co-researchers. Active participation in research for young people with lived experience of cerebral palsy and their families is a fundamental human right, based on their right to be active agents in decisions that affect them. In this paper we explore how our collaborative approach, and the integration of diverse views, has enhanced the relevance, quality, usefulness, and translation of our research. We also describe (i) the structural elements of our research group that have facilitated our work together, (ii) our challenges, and (iii) how the ownership of our research by people with cerebral palsy is driving future research directions and empowering involvement of people with lived experience beyond CP-ACHIEVE. We offer this knowledge and our experiences to assist other research teams in their journeys towards collaborative research alongside people with lived experience of disability.

Abstract Purpose It is well documented parents of children who have a disability are at an increased risk of poor mental health and wellbeing. A capacity building program designed to build key worker self-efficacy to support the mental health of parents accessing early childhood intervention services (ECIS) for their child was trialled. Materials and Methods A stepped-wedge cluster randomised trial design was utilised to deliver and evaluate a 12-month intervention program, comprising tailored professional development, resource development and sustainability measures. The repeated measurements on individuals in six clusters over three follow-up periods were analysed using linear mixed models. Comparison of the control and new program statistical means (adjusted for period effects) were assessed with an F test. Results Key workers reported increased confidence to talk to parents about their own wellbeing (d = 0.51, F(1, 51.8) = 4.28, p = 0.044) and knowledge of parental mental wellbeing improved (p = 0.006). A reduction in staff sick leave partially offset the cost of the intervention. Conclusions A multi-pronged intervention targeted at key workers was found to be an effective way to ensure parental wellbeing is supported at an ECIS in Australia. Trial Registration ACTRN12617001530314 Implications for Rehabilitation There are implications for the development of children whose parents are experiencing high stress and poor mental health, whereby parents of children with disability or developmental delays are at increased risk. Findings from this study support the recommendation that a key worker is provided to holistically support families who access Early Childhood Intervention Services to aid in reducing poor parental wellbeing and child outcomes. Improved confidence to support and initiate conversations regarding parental wellbeing by key workers, in combination with support from management and the organisation to undertake this as part of their role, is a positive finding from this intervention study.

"Professionalism and partnership in health care. Response to Duckworth and Wilson (2022), Beyond the Webster-pak." Research and Practice in Intellectual and Developmental Disabilities, 9(1), pp. 93–94

The delivery of family-centred practice (FCP) within Early Childhood Intervention Services (ECISs) for young children with a disability or development delay conceptualises that children's learning environments, parenting, family and community supports intersect to have the greatest impact on the developing child. The transdisciplinary key worker model is considered a best-practice approach within ECISs whereby staff work collaboratively across disciplinary boundaries to plan and implement services for children and their families. Research suggests families who have a key worker have better relationships with services, fewer unmet needs, better morale, more information about services, higher parental satisfaction and more parental involvement than those not receiving this service. Using a phenomenological qualitative design this study sought to understand transdisciplinary key workers' perspectives regarding the strengths and challenges to undertaking their role in providing services to children and families accessing an ECIS at a major disability service organisation, in light of the changing policy reform during the roll out of the National Disability Insurance Scheme in Australia. Purposive sampling was used to recruit key workers (n = 13) to participate in semi-structured interviews during 2015. Data were analysed using an inductive, thematic approach. Results revealed four main themes that impact on the effectiveness of key workers' service provision. These are broadly categorised as (a) Engagement with the workplace, (b) Engagement with clients, (c) Professional capacity and (d) Staff Wellbeing. The findings aligned with previous studies identifying sources of support and stress for disability services staff. They also provided new insights into key workers' lack of confidence in addressing parental mental health issues, despite operating under a family-centred approach. These findings informed the development of an intervention trial and evaluation to improve support for parent and staff wellbeing within a Victorian Disability Service with the aim of building their capacity to support children with a disability.

Aim To retrospectively profile acute hospital admissions for a defined cohort of adults with cerebral palsy (CP). Method Five years of health service data were interrogated to identify acute health service use by adults with CP. Admission types were described, admission reasons categorized using International Classification of Diseases, 10th Revision codes, and length of stay (LOS) calculated. Any differences between paediatric and adult subsets were explored. Results Individuals with CP constituted 2922 admissions. Of these, 850 (29%) were adult admissions. There were significant differences between admission reasons for paediatric and adult cohorts, with adults predominantly seeking hospital admission for emergency rather than planned care (emergency reason: adults 62.1%, paediatrics 25.2%; p<0.001). The median adult admission LOS was longer than that of children (p<0.001). The primary diagnosis admission reason in the adult data set was respiratory illness (20%) followed closely by gastrostomy dysfunction (19%). Interpretation Adults with CP predominantly access acute hospital services for emergency health care. A high frequency of admissions is associated with respiratory illness and gastrostomy dysfunction in adults with CP. What this paper adds Adults with cerebral palsy (CP) access acute inpatient services for emergency health care. Hospital admissions are predominantly because of respiratory illness and gastrostomy dysfunction. Admission length of stay is longer for adults than children. Many adults with CP require hospitalization more than once a year.

Background Early childhood intervention services support children with disabilities or developmental delays from birth to school entry with the aim to achieve optimal outcomes for children and their families. A transdisciplinary approach to delivering early childhood intervention, particularly the key worker model, is considered the best practice, where allied health professionals (eg, speech pathologists, physiotherapists, occupational therapists, psychologists, and special educators) and the family work together as a collaborative team to share information, knowledge, and skills across disciplinary boundaries, with a key worker coordinating and delivering most of the intervention to achieve the goals for the child and their family. Initial qualitative research demonstrated parents want their key worker to also support their mental well-being. Poor mental well-being of parents of a child with a disability is of relevance to key workers because of its association with poor child-related outcomes. One of the major challenges key workers report in supporting families is managing parent distress and, because of lack of confidence, is a secondary negative impact on their own well-being. Objective This trial has been developed in response to the negative cycle of low professional confidence to support parents’ mental health, increased key worker stress, and high turnover of employees working within a disability service setting. Methods A stepped-wedge design is used to deliver and evaluate a capacity building intervention program, over a 9-month period, for key workers to improve both parent and staff mental well-being. The primary outcome is key workers’ self-efficacy in supporting parental mental well-being. Secondary outcomes include manager self-efficacy in supporting key workers and staff perceptions of supervisory support, staff job-related mental well-being, parental satisfaction with their key worker, parental mental well-being, and cost-consequence of the program. Results This study was funded in October 2014, supported by an Australian National Health and Medical Research Council Partnership Project grant (Grant number 1076861). Focus groups and individual face-to-face interviews were conducted from February to November 2015 with 40 parents who have a child with a disability and 13 key workers to gain insight into how the disability service could better promote child and family health and well-being and to inform about the development of the trial. Conclusions The stepped-wedge study design is practical and ethical for research with a vulnerable population group of parents of a child with a disability, providing high quality data with all participants exposed to the intervention by the end of the trial. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12617001530314; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372578 (Archived by WebCite at http://www.webcitation.org/76XjDavnG) International Registered Report Identifier (IRRID) DERR1-10.2196/12531

Sleep difficulties are common in people with cerebral palsy and can have an adverse effect on health and development. This fact sheet outlines some of the causes of sleep difficulties and investigation options for GPs.

Some people with cerebral palsy may face particular challenges with communication. This fact sheet describes some of the ways to support and assist communication with people with cerebral palsy.

Background Individuals with intellectual disability experience higher rates of physical and mental health conditions compared with the general population, yet have inequitable access to health care services. Improving the workplace capacity of medical professionals to meet the needs of this population is one way to reduce barriers to care and improve health outcomes. Using diverse pedagogy appropriate to learning outcomes to teach medical students about intellectual disability is a necessary step in improving future workplace capacity. However, there is a lack of research into how, and by whom, medical students are taught about intellectual disability. The aim of this study was to investigate this through an audit of Australian medical school curricula. Methods The Deans of Australian universities that provide accredited medical degrees ( n = 20) were invited by email to participate in a two-phase audit of intellectual disability content in the curricula. Phase 1 ( n = 14 schools) involved the Dean’s delegate completing a telephone interview or questionnaire regarding medical course structure. If intellectual disability content was identified, a unit coordinator was invited to complete a survey regarding how this content was taught and by whom (Phase 2; n = 12 schools). Results There was considerable variability across Australian medical schools regarding methods used to teach content about intellectual disability. Didactic teaching methods were most frequently used (62% of units included some form of lecture), but workshops and tutorials were reasonably well represented (34% of units contained one or both). Thirty-six percent of units included two or more teaching methods. Almost all schools (83%) used some problem- and/or enquiry-based learning. Educator backgrounds included medicine, nursing, and allied health. A majority of schools ( n = 9, 75%) involved people with intellectual disability designing and teaching content, but the extent to which this occurred was inconsistent. Conclusions Renewing curricula around intellectual disability across all medical schools by introducing varied teaching methods and the inclusion of people with intellectual disability would assist students to develop knowledge, skills, attitudes, and confidence in intellectual disability health. Such renewal offers the potential to reduce barriers to service this population regularly face, thereby improving their health outcomes.

This fact sheet is for people with cerebral palsy and those who support them in their healthcare needs. It provides some ideas for making the most of your appointment with your GP.

pain (76.9%), toe walking starting later than when the child first began to walk (46.2%), bladder incontinence (46.2%), hyperreflexia (38.5%), presence of ankle clonus (38.5%), abnormal muscle tone (30.8%), worsening toe walking (15.4%), and presence of a sacral dimple (15.4%). Interestingly, the child with tethered cord on MRI was the only one found to have scoliosis in the entire cohort. Conclusions/Significance: In our single-center experience, this study suggests that the overall incidence of tethered cord is low (0.6%). Some limitations to this study include selection bias and inability to define a true positive and false group given that only 7.8% of the population had spine MRI. Despite these limitations, we feel our findings are noteworthy and contribute to the lack of data in this area. The frequency of factors that led to the spine MRI and notable finding of scoliosis could be further corroborated in larger studies looking at the same cohort.

Background There is a high burden of unmet health needs for people with intellectual disability. Despite experiencing significantly higher rates of morbidity and mortality compared with the general population, this group faces greater barriers to accessing healthcare. While increasing workplace capacity is one way to reduce this inequitable access, previous research indicates a scarcity of undergraduate teaching in intellectual disability. The aim of the study was to determine the extent and nature of intellectual disability content currently offered within medical degree curricula. Methods All Australian universities ( n = 20) providing accredited medical training were invited to participate in a two-phase audit via an email invitation to the Dean of each medical school. The Dean’s delegate from 14 medical schools completed Phase 1, which involved a questionnaire or telephone interview about the overall medical course structure. Unit coordinators and/or teaching staff from 12 medical schools completed Phase 2, which involved an online survey about intellectual disability content within the curriculum. Results In Australia, medical school curricula contain a median of 2.55 h of compulsory intellectual disability content. The majority of universities only offer a small amount of compulsory content. Of compulsory units, intellectual disability teaching is minimal in sexual health and emergency medicine (only one unit offered in one school for each). Topics of key relevance in intellectual disability health such as human rights issues, interdisciplinary team work and preventative health are poorly represented in intellectual disability teaching. Elective content varies markedly across universities (1 to 122 h), but emergency medicine, women’s health, men’s health and many other specialist medicine areas are not represented. Inclusive practice is inconsistent in degree and nature, but a majority of universities (nine) involve people with intellectual disability in the development or delivery of content. Conclusions There is a mismatch between the considerable unmet health needs of people with intellectual disability and the inconsistent teaching within medical schools. Future doctors will be better equipped to support the health and wellbeing of people with intellectual disability if curricula are enhanced in this area.

The approach to menstrual management in girls with intellectual disabilities should be the same as it is for other girls. Advice may need to be tailored according to the severity of the disability. Girls who can manage their own toilet hygiene can usually learn to manage their menses independently. They need preparation for the menarche with information appropriate to their level of understanding. When assessing menstrual problems, it may help to chart any symptoms against the menstrual cycle to confirm that they are related. The management options for problems such as dysmenorrhoea or heavy bleeding are the same as they are for other women.

pain (76.9%), toe walking starting later than when the child first began to walk (46.2%), bladder incontinence (46.2%), hyperreflexia (38.5%), presence of ankle clonus (38.5%), abnormal muscle tone (30.8%), worsening toe walking (15.4%), and presence of a sacral dimple (15.4%). Interestingly, the child with tethered cord on MRI was the only one found to have scoliosis in the entire cohort. Conclusions/Significance: In our single-center experience, this study suggests that the overall incidence of tethered cord is low (0.6%). Some limitations to this study include selection bias and inability to define a true positive and false group given that only 7.8% of the population had spine MRI. Despite these limitations, we feel our findings are noteworthy and contribute to the lack of data in this area. The frequency of factors that led to the spine MRI and notable finding of scoliosis could be further corroborated in larger studies looking at the same cohort.