Redefining Self‐Advocacy: A Practice Theory‐Based Approach

The disabled people's movements have successfully influenced public policies and laws. Self‐advocates who are autistic or have an intellectual disability have been working alongside other advocates for recent decades. Practice theory has rarely been used in disability research. This study explores “practice theory” through the analysis of interviews with advocates and self‐advocates within the autism and intellectual disability advocacy movements. This is a qualitative, empirical study based on interviews and focus groups with 43 participants in two countries. The data were collected in 2016–17. Content analysis was used to identify themes. Data indicate that everyday practices of self‐advocates and advocates such as parent advocates and professional advocates largely overlap. There are five major types of practices that are done by nearly all advocates: “informing and being informed,” “using media,” “supporting each other,” “speaking up,” and “bureaucratic duties.” Contrary to several previous studies on self‐advocacy that emphasized “speaking up” as the main activity in advocacy, this study found that most practices of advocates and self‐advocates are “para‐advocacy” practices that may or may not lead directly to “speaking up.” Practices of self‐advocates are often embedded in other everyday activities people do. The line between practices that belong to self‐advocacy and practices outside self‐advocacy may not always be clear even to self‐advocates. Findings also indicate that hierarchies in the disability movement influence strongly the position of self‐advocates

Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs

Background With increasing reductions in funding for social care across many countries, the need to ensure that resources are used to best effect is becoming increasingly important, in particular for those with severe and complex needs. Methods In order to explore the outcomes and costs of skilled support for this group of people, quality of life was assessed for 110 people in 35 services in England. Information on costs was also collected. Results People who received consistently good active support experienced better outcomes in terms of several quality of life domains. Good support did not require significantly more staff time, and there was no evidence of higher total costs for those receiving good support. Conclusions The inclusion of active support in government guidance and local commissioning practices related to people with severe intellectual disabilities is likely to improve user outcomes. Observation should be an important element in measuring service quality

Commentary on Consumer behaviour analysis and non-adoption of behavioural interventions: implications for managerial action

Purpose: The purpose of this paper is to reflect on the difficulties highlighted by Ntinas around supporting change in services for people with intellectual and developmental disabilities. Design/methodology/approach: This commentary examines what is needed for change and reflects on staff culture. Findings: The authors propose that it is not sensible to separate the culture of a service from the implementation of person-centred approaches and attempt to map how the concepts overlap and are interconnected. Originality/value Whilst some elements of culture are clearly important in order to start the process of change, other elements will change as an intervention is introduced and embedded

Measuring practice leadership in supported accommodation services for people with intellectual disability: Comparing staff-rated and observational measures

Background Studies incorporating staff-rated or observational measures of practice leadership have shown that where practice leadership is stronger, active support is better implemented. The study aim was to compare measures of practice leadership used in previous research to determine the extent of their correspondence. Method A subset of data from a longitudinal study regarding 29 front-line managers working across 36 supported accommodation services in Australia was used. An observed measure of practice leadership, based on an interview and observation of a front-line manager, was compared with ratings of practice leadership completed by staff. The quality of active support was rated after a 2-hour structured observation. Results Correlations between staff-rated and observed measures were non-significant. Only the observed measure was correlated with the quality of active support. Conclusions This study provides evidence to support using an observational measure of practice leadership rather than reliance on staff ratings

Evaluating service users’ experiences using Talking Mats®

Purpose The purpose of this paper is to establish the effectiveness of Talking Mats® (TM) in evaluating service users’ experiences, and explore their views of the implementation of person-centred active support (PCAS). Design/methodology/approach This is a mixed-methods study, employing qualitative interviewing and observational measures. Findings Both qualitative and quantitative measures indicated inconsistent implementation of PCAS. It was possible to effectively gain participants’ views on positive and negative aspects of quality of support and quality of life, using TM, across three themes, My life, My support and Self-determination. Research limitations/implications Generalisability of the research may be limited due to the sample, and the potential for researcher and interviewer bias is acknowledged. Practical implications TM provides a mechanism that may facilitate the inclusion of the views and experiences of people with intellectual and developmental disability (PWIDD) who have limited verbal skills. Their views need to be reflected in adaptions made to PCAS. Originality/value This study included a population who are often left out of qualitative research because of the methodologies adopted. It also included older PWIDD, where there has been less research about the effectiveness of TM

I felt that I deserved it - experiences and implications of disability hate crime

Purpose – The purpose of this paper is to summarise key findings and recommendations from the “Living in Fear” research project focusing on the experiences of people with learning disabilities and autism related to disability hate crime and the experience of the police in dealing with such incidents. Design/methodology/approach – Methods included: first, a postal survey with 255 people with learning disabilities or autism (or their carers for people with more severe disabilities), of whom 24 also took part in semi-structured interviews; and second, an electronic survey of the knowledge and experience of 459 police officers or support staff. Findings – Just under half of participants had experienced some form of victimisation. The Police reported problems with the definition of disability hate crime and challenges to responding effectively. Social implications – A case study from the research highlights some of the key findings and is linked to implications for people with learning disabilities and autism, carers, police and other agencies. Originality/value – Previous research has highlighted that victimisation is an issue for this group of people, but has never explored the prevalence and nature of such experiences in a representative sample. Neither has previous research brought together the perspectives of so many different agencies to offer recommendations that go across many sectors. The paper will be of interest to people with disabilities and their carers, professionals in health, social care and the Criminal Justice system

The spatial variability of water chemistry and DOC in bog pools: the importance of slope position, diurnal turnover and pool type

We have previously shown that marine influence is an important factor controlling regional variability of pool water chemistry in blanket peatlands. Here we examine within-site controls on pool water chemistry. We surveyed natural and artificial (restoration sites) bog pools at blanket peatland sites in northern Scotland and Sweden. DOC, pH, conductivity, dissolved oxygen, temperature, cations, anions and absorbance spectra from 220-750nm were sampled. We sampled changes over time but also conducted intensive spatial surveys within individual pools and between pools on the same sampling days at individual study sites. Artificial pools had significantly greater DOC concentrations and different spectral absorbance characteristics when compared to natural pools at all sites studied. Within-pool variability in water chemistry tended to be small, even for very large pools (~400 m2), except where pools had a layer of loose, mobile detritus on their beds. In these instances rapid changes took place between the overlying water column and the mobile sediment layer wherein dissolved oxygen concentrations dropped from values of around 12-10 mg L-1 to values less than 0.5 mg L-1 over just 2-3 cm of the depth profile. Such strong contrasts were not observed for pools which had a hard peat floor and which lacked a significant detritus layer. Strong diurnal turnover occurred within the pools on summer days, including within small, shallow pools (e.g. < 30 cm deep, 1 m2 area). For many pools on these summer days there was an evening spike in dissolved oxygen concentrations which originated at the surface and was then cycled downwards as the pool surface waters cooled. Slope location was a significant control on several pool water chemistry variables including pH and DOC concentration with accumulation (higher concentrations) in pools that were located further downslope in both natural and artificial pool systems. These processes have important implications for our interpretation of water chemistry and gas flux data from pool systems, how we design our sampling strategies and how we upscale results

Imagining Autism: Feasibility of a Drama-Based Intervention on the Social, Communicative and Imaginative behaviour of Children with Autism

We report the feasibility of a novel, school-based intervention, coined ‘Imagining Autism’, in which children with autism engage with drama practitioners though participatory play and improvisation in a themed multi-sensory “pod” resembling a portable, tent-like structure. 22 children, aged 7–12 years, from three UK schools engaged in the 10week programme. Measures of social interaction, communication, emotion recognition, along with parent and teacher ratings, were collected before and up to 12 months after the intervention. Feasibility was evaluated through 4 domains: (1) process (recruitment, retention, blinding, inter-rater reliability, willingness of children to engage), (2) resources (space, logistics), (3) management (dealing with unexpected changes, ease of assessment), and (4) scientific (data outcomes, statistical analyses). Overall, the children, parents and teachers showed high satisfaction with the intervention, the amount of missing data was relatively low, key assessments were implemented as planned, and evidence of potential effect was demonstrated on several key outcome measures. Some difficulties were encountered with recruitment, test administration, parental response, and the logistics of setting up the pod. Following several protocol revisions and the inclusion of a control group, future investigation would be justified to more thoroughly examine treatment effects