Tracing the refinement of policy tools for disability rights: a content analysis of how the granting process of state-funded personal assistance in Sweden is aligned with the LSS Act.

PURPOSE: According to the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (The LSS Act), personal assistance (PA) aims to enhance good living conditions for people with disability. The Act is operationalised by a policy tool, an instruction developed and refined by the Swedish Social Insurance Agency (SSIA) to grant PA. The study explores how this instruction is aligned with the LSS rationale and goals. MATERIAL AND METHOD: Qualitative content analysis was applied on the material i.e., a government bill preceding the LSS Act and the policy tool, i.e., the SSIA instruction, versions 1994 and 2019. RESULTS: The result shows that the instruction has deviated from the LSS Act over time, by decreasing users' access to community life, a shift towards health care activities, lack of support for the PA user, increased control and service-granting criteria. CONCLUSION: This paper emphasises that the selection of policy tools goes beyond mere pragmatism, as they are subject to refinement procedures that have significant impacts over time. The deviations observed in fulfilling the objectives of the LSS Act highlights the importance of ongoing adjustments to policy tools to align with the original policy goals in order to promote disability rights.

The study explored how policy tools, which serve as compulsory guidance by outlining the personal assistance granting process for local caseworkers, align with the rationale and policy goals of the Swedish Disability Act and policy goals, aiming to enhance good living conditions for people with disabilities.The designs of policy tools are frequently revised and adjusted and consequently influence policy outcome over time.Since policy tools are important for the implementation of government policy they need to be reviewed and monitored in order to secure original policy goals with the ultimate aim of enhancing good living conditions and advancing disability rights.

A trained communication partner's use of responsive strategies in aided communication with three adults with Rett syndrome: A case report.

Purpose: To explore and describe a trained communication partner's use of responsive strategies in dyadic interaction with adults with Rett syndrome. Introduction: Responsive partner strategies facilitate social, communicative, and linguistic development. The common feature is that the communication partner responds contingently to the other's focus of attention and interprets their acts as communicative. Research on responsive partner strategies that involves individuals with significant communication and motor disabilities remains sparse. The same applies to if, and how, the use of communication aids impacts on the partner's use of responsive strategies. Materials and methods: A therapist, trained in responsive partner strategies and aided communication interacted during 14 sessions with each of three participants. The participants were adults with Rett syndrome. A gaze-controlled device and responsive strategies were used during all sessions. The Responsive Augmentative and Alternative Communication Style scale (RAACS) was used to assess the partner's responsiveness. RAACS consists of 11 items including ratings of to what extent the partner is being attentive to, confirms, and expands the individual's communication. During eight of the 14 sessions, aided AAC Modelling was also used, i.e., the communication partner pointed at symbols on the gaze-controlled device while interacting. In addition to RAACS, each time the communication partner confirmed or expanded on communication when (a) the participants used the gaze-controlled device and (b) the participants did not use the gaze-controlled device was counted. Descriptive statistics were used to present the results. Non-parametric tests were used to compare means between the two conditions and between participants. Results: Inter-rater agreement for the different RAACS items ranged from 0.73 to 0.96 and was thus found to be fair to excellent. The communication partner's use of responsive strategies varied when communicating with different participants and the scores were higher when aided AAC modeling was used. The communication partner's number of responses and use of responsive strategies were higher when the participants communicated through a gaze-controlled device. Conclusion: The communication partner's use of responsive and scaffolding strategies is not a fixed construct but varies in interactions with different non-speaking persons. The same is true whether the non-speaking person uses a gaze-controlled device with digitized speech or not.

Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study.

PURPOSE: To explore whether the personal assistance (PA) activities provided by the Swedish Act concerning Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote participation in society according to Article 19 of the United Nations' Convention on the Rights of Persons with Disabilities (UNCRPD). METHODS: Register data and data from two questionnaires were used (N = 2565). Descriptive statistics and chi-square (McNemar's test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015. RESULTS: Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older people, and for a particular person category. CONCLUSIONS: The results offer evidence of a shift to a medical model and indicate a risk of social exclusion due to fewer activities representing an active life. An increase on average of 16 h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD.Implications for RehabilitationPersonal assistance (PA) in Sweden is a supportive measure for persons with disabilities; however, there are few studies to show whether PA activities are fulfilling disability rights of participation in society.The results show that PA activities are used more for medical care and home-based services over the five-year period.The study highlights the importance of monitoring aspects of content to ensure that the activities of PA comply with the policy objectives of the LSS legislation and Article 19 of the United Nations' Convention on the Rights of Persons with Disabilities (UNCRPD), i.e., full participation in society. Monitoring efforts should include individualised planning and follow-up, moreover, ensure compliance with social service capacity at PA providers.

Caregivers', teachers', and assistants' use and learning of partner strategies in communication using high-tech speech-generating devices with children with severe cerebral palsy.

Communication with speech generating devices (SGDs) with children with severe physical, communicative and cognitive impairments, such as children with cerebral palsy (CP), can be difficult. Use of partner strategies facilitates the communication and instructional approaches such as feedback and role play facilitate communication partners' learning in how to use partner strategies. To describe communication partners' use and learning about partner strategies in SGD-mediated communication with children with severe CP. Questionnaires (n = 65) were sent to caregivers (n = 30), teachers (n = 17), and teaching or personal assistants (n = 18) of children with severe CP. Response rate was 80%. To ask open-ended questions was the most frequently used partner strategy and aided augmented input the least frequently used partner strategy. Most commonly, participants learned partner strategies from speech and language pathologists (SLPs) who used verbal instructions when teaching partner strategies but seldom or never feedback, role play or video examples. Communication partners' learning about partner strategies in SGD-mediated communication is inadequate and needs to be improved. SLPs, who are the main prescribers of SGDs and responsible for training and support in using them, should consider using instructional approaches when teaching communication partners about partner strategies in communication with an SGD.

Development of a tool to assess visual attention in Rett syndrome: a pilot study.

This was a two-phase study that aimed to (a) develop a tool for assessing visual attention in individuals with Rett syndrome using AAC with a communication partner during naturalistic interactions in clinical settings; and (b) explore aspects of the tool's reliability, validity, and utility. The Assessment of Visual Attention in Interaction (AVAI) tool was developed to assess visual attention operationalized as focused gazes (1 s or longer) at the communication partner, an object, and a symbol set. For the study, six video-recorded interactions with nine female participants diagnosed with Rett syndrome (range: 15-52-years-old) were used to calculate intra- and inter-rater agreement, and 18 recorded interactions were analyzed to examine sensitivity to change and acceptability. There was a significant difference in the AVAI results between two conditions (with and without aided-language modeling). Inter-rater agreement ranged from moderate and strong. There was a range in scores, indicating that the AVAI could differentiate between participants. The AVAI was found to be reliable, able to detect change, and acceptable to the participants. This tool could potentially be used for evaluating interventions that utilize aided AAC.

Speech and language pathologists' perceptions and practises of communication partner training to support children's communication with high-tech speech generating devices.

Purpose: This study examined speech and language pathologists' (SLPs') perceptions and practices of communication partner training with high-tech speech generating devices (SGDs). Method: Fifteen SLPs were recruited throughout Sweden. The SLPs answered a study-specific questionnaire on communication partner training in relation to communication partners to children with severe cerebral palsy and intellectual disability. The results were analysed with descriptive statistics (closed-ended questions, responses on Likert scales) and content analysis (open-ended question) using ICF-CY. Results: Twelve SLPs completed the survey. Half had no or one training session with communication partners in the last year. One-third never used documents for goal-setting. Half seldom or never taught communication partner strategies. Three quarters only used verbal instructions. The main obstacles were environmental factors. Conclusions: This study contributes valuable knowledge about high-tech SGD interventions targeting communication partners. The high-tech SGD intervention may benefit from goal-setting, extended number of training sessions and a range of instructional approaches. Implications for Rehabilitation Speech and language pathologist (SLPs) reported that children with severe cerebral palsy and intellectual disability (SSPI) can benefit from speech generating device (SGD) communication. Communication partner strategies and goal-setting supports the development of communication with SGD. SLPs seldom taught stakeholder communication partner strategies and instruments for goal-setting. Because stakeholders may vary in their way of learning SLPs need to use a variety of instructional approaches. SLPs used few instructional approaches, typically verbal information.

Clinical utility of the Structured Observation of Motor Performance in Infants within the child health services.

AIM: This study aimed to evaluate the clinical utility of the Structured Observation of Motor Performance in Infants (SOMP-I) when used by nurses in routine child healthcare by analyzing the nurses' SOMP-I assessments and the actions taken when motor problems were suspected. METHOD: Infants from three child health centers in Uppsala County, Sweden, were consecutively enrolled in a longitudinal study. The 242 infants were assessed using SOMP-I by the nurse responsible for the infant as part of the regular well-child visits at as close to 2, 4, 6 and 10 months of age as possible. The nurses noted actions taken such as giving advice, scheduling an extra follow-up or referring the infant to specialized care. The infants' motor development was reassessed at 18 months of age through review of medical records or parental report. RESULTS: The assessments of level of motor development at 2 and 10 months showed a distribution corresponding to the percentile distribution of the SOMP-I method. Fewer infants than expected were assessed as delayed at 4 and 6 months or deficient in quality at all assessment ages. When an infant was assessed as delayed in level or deficient in quality, the likelihood of the nurse taking actions increased. This increased further if both delay and quality deficit were found at the same assessment or if one or both were found at repeated assessments. The reassessment of the motor development at 18 months did not reveal any missed infants with major motor impairments. INTERPRETATION: The use of SOMP-I appears to demonstrate favorable clinical utility in routine child healthcare as tested here. Child health nurses can assess early motor performance using this standardized assessment method, and using the method appears to support them the clinical decision-making.

The Structured Observation of Motor Performance in Infants has convergent and discriminant validity in preterm and term infants.

AIM: Methods are needed to evaluate the level of early motor development and quality of motor performance in infants. We examined the convergent and discriminant validity of the Structured Observation of Motor Performance in Infants (SOMP-I) for evaluating the level of motor development and quality of motor performance in preterm and term infants. METHODS: A regional cohort of 111 preterm infants with a gestational age of <32 weeks and 72 healthy term born infants were assessed with the SOMP-I, at two, four, six and 10 months of corrected age. Convergent validity was analysed with a mixed model analysis of the motor performance over time. Discriminant validity was analysed with the Mann-Whitney U-test in groups with different neonatal characteristics. RESULTS: Convergent validity was supported, as the level of motor development increased with age and the quality of motor performance improved over time. The method discriminated for both level and quality between the preterm and the term infants. The preterm infants demonstrated different quality deficits regardless of the level of motor development. CONCLUSION: Convergent validity and discriminant validity of the SOMP-I were supported in preterm and term infants and facilitates early identification of infants with atypical motor development.

Do personal assistance activities promote participation for persons with disabilities in Sweden?

PURPOSE: To examine how the right to participation according to Article 19 of the United Nations' Convention on the Rights of Persons with Disabilities (UNCRPD) is promoted by personal assistance use in Sweden across age, gender and eligible person categories. METHOD: Register data and data from a questionnaire were used (N = 15,289). Principal component analysis was performed and the internal consistency was tested. Descriptive statistics (χ2 test) were used across age, gender and eligible person categories and components. RESULTS: An uneven distribution of personal assistance across the components Health and Care; Home, Leisure and Social Interaction; and Daily Occupation was found. Significant differences in personal assistance reported were found between children and adults, men and women and between the three eligible person categories. CONCLUSIONS: The discrepancy between reported and expected outcome of personal assistance indicates that Article 19 of the UNCRPD has not been met. The unequal access to participation across age, gender and eligible person categories would seem to further signify that the Act concerning Support and Service for Persons with Certain Functional Impairments is promoting activities of a caring nature rather than fulfilling Article 19 of the UNCRPD, i.e. ensuring full participation in society. IMPLICATIONS FOR REHABILITATION Government assistance allowance were granted for predominantly health and care, i.e. basic needs presenting risk of undermining the intention of participation in society. Men reported more personal assistance use for activities promoting participation than women. The discrepancy found between reported and expected outcome of personal assistance underlines the importance of service providers and administrative officials being sensitive to policy intentions. There is a need of guidelines for service providers and administrative officials to promote disability rights of participation for persons eligible for personal assistance.

Are there gender differences in wellbeing related to work status among persons with severe impairments?

AIM: The aim of this study was to analyse gender differences in wellbeing, as related to work status, among working-age people with severe impairments. METHODS: This study is based on register and survey data for a sample of 7298 persons, drawn from the entire Swedish population of 15,515 working-age people 16-64 years old who, at the end of 2010, received Sweden's unique personal assistance allowance, an allowance paid from the Swedish Social Insurance Agency (SSIA) to persons with severe impairments, enabling them to pay for assistants to support them in the functions of daily life. Logistic regression models were used to estimate the strength of relations between six measures of wellbeing, work status (not working, irregular work and regular work) and gender, together with key confounders. RESULTS: Of the persons surveyed, 21% responded that they had regular work. Gender differences were found for all confounders, except for age. They were mostly in favour of men, which could reflect the general pattern in the labour market at large. Our results indicated there are substantial differences between non-working, irregularly working and working persons for several wellbeing aspects. CONCLUSIONS: This study analyses the contributions to wellbeing of work participation among working-age people with severe impairments, with a focus on gender differences. The analysis shows that work is an important determinant of the six measures of wellbeing examined, where the relationship between work participation and wellbeing is especially strong for peoples' perceived standard of living. This major finding holds for both genders; however, the data show gender imbalance, in that compared with women, there was a larger percentage of men with severe impairments who have regular work. Future research should focus on finer distinctions between the types of work and the value added of personal assistants in the work context. Measures of general health not available for this study are needed to filter out a clearer picture of the interaction of work and well-being. Despite drawbacks, this study is nevertheless path-breaking in its focus on the value of work participation for the well-being of persons with severe impairments. For this reason, it provides a valuable extension of our knowledge and a clear point of departure for future studies.

'Now I use words like asymmetry and unstable': nurses' experiences in using a standardized assessment for motor performance within routine child health care.

RATIONALE, AIMS AND OBJECTIVES: There is an increasing recognition that early intervention is important for children with motor disorders. The use of standardized assessment methods within the Swedish Child Health Services (CHS) may improve early identification of these children and thereby their development and quality of care. Given the key role of nurses within the CHS, we explored their experiences of using a structured assessment of motor performance (SOMP-I) in a clinical setting, and investigated possible barriers and facilitators for implementation of the method within the CHS. METHODS: The study was conducted in 2013 in Uppsala County, Sweden. Ten child health nurses participated in two focus group interviews, which were analysed using systematic text condensation. RESULTS: The analysis yielded three themes: (1) increased knowledge and professional pride - nurses described their desire to provide high-quality care for which SOMP-I was a useful tool; (2) improved parent-provider relationship - nurses felt that using SOMP-I involved both the parents and their infant to a greater extent than routine care; and (3) conditions for further implementation - nurses described that the time and effort needed to master new skills must be considered and practical barriers, such as lack of examination space, resource constraints and difficulties in documenting the assessment must be addressed before implementing the SOMP-I method in routine care. CONCLUSION: Child health nurses felt that the SOMP-I method fitted well with their professional role and increased the quality of care provided. However, significant barriers to implementing SOMP-I into routine child health care were described.

Can nurses be key players in assessing early motor development using a structured method in the child health setting?

RATIONAL, AIMS AND OBJECTIVES: Increasing evidence highlights the importance of early interventions for motor disorders in children. Given the key medical role of the nurse within the Swedish Child Health Service (CHS), we aimed to examine if nurses could apply a structured assessment of early motor development at the child health centre to enable early identification of children at risk. METHODS: Structured Observation of Motor Performance in Infants (SOMP-I) assesses infant's level of motor development and quality of motor performance using subscales converted to total scores. The total score for both level and quality can then be plotted within the SOMP-I percentile distribution at the child's age for comparison with a reference population. Fifty-five infants (girls: 30) were assessed according to SOMP-I at three child health centres. Assessments were performed by nurses (n = 10) in a clinical setting; one nurse performed the assessment while another nurse and a physiotherapist observed. RESULTS: Agreement for the assessment of level as a continuous variable was excellent [intraclass correlation coefficient (ICC) 0.97-0.98], but was lower for quality (ICC 0.02-0.46). When the children were categorized according to the percentile range categories, the assessors were in agreement for the majority of the children, with respect to both level (78-82%) and quality (78-87%). CONCLUSION: Despite brief experience with SOMP-I, the agreement was excellent when assessing the level of motor development, but was less satisfactory for the assessment of quality of motor performance. More extensive education and training may be necessary to improve the nurses' ability to assess quality, as this domain was an entirely new concept to the nurses. Further research is warranted to determine the applicability of SOMP-I as a standardized method for nurses to assess motor development within the CHS.

Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services.

PURPOSE: To investigate communication intervention that speech language pathologists (SLPs) provide to people with Rett syndrome. METHODS: A web-based survey targeting all Swedish SLPs working with people currently receiving support from habilitation services. RESULTS: The SLPs reportedly followed recommended practice in the following aspects: (1) Information on communicative function was collected from several sources, including observation in well-known settings and reports from the client s social network, (2) Multimodal communication was promoted and, (3) Responsive partner strategies were largely targeted in the intervention. However, few instruments or standard procedures were used and partner instruction was given informally. Most SLPs used communication aids in the intervention and their general impression of using communication aids was positive. Further, augmentative and alternative communication (AAC) was estimated to increase and clarify communicative contributions from the person. CONCLUSIONS: Communication aids were reported to have a positive influence on communicative functions. Swedish SLP services followed best practice in several aspects, but there are areas with potential for development. Tools and best practice guidelines are needed to support SLPs in the AAC process for clients with Rett syndrome. [Box: see text].

Predefined headings in a multiprofessional electronic health record system.

BACKGROUND: Applying multiprofessional electronic health records (EHRs) is expected to improve the quality of patient care and patient safety. Both EHR systems and system users depend on semantic interoperability to function efficiently. A shared clinical terminology comprising unambiguous terms is required for semantic interoperability. Empirical studies of clinical terminology, such as predefined headings, in EHR systems are scarce and limited to one profession or one clinical specialty. OBJECTIVE: To study predefined headings applied by users in a Swedish multiprofessional EHR system. MATERIALS AND METHODS: This was a descriptive study of predefined headings (n=3596) applied by 5509 users in a Swedish multiprofessional EHR system. The predefined headings were classified into four term and word categories. RESULTS: Less than half of the predefined headings were shared by two or more professional groups. All eight professionals groups shared 1.7% of the predefined headings. The distribution of predefined headings across categories yielded two-thirds "terms for special purposes" and "specialist terms" and one-third "common words" and "unclassified headings". DISCUSSION: The indicated presence of profession-specific predefined headings and the conflict between ambiguity and comprehension of terms and words used as headings are discussed. CONCLUSIONS: The predefined headings in the multiprofessional EHR system studied did not constitute a joint language for specific purposes. The improvement of the quality and usability of multiprofessional EHR systems requires attention.

Communication difficulties and the use of communication strategies: from the perspective of individuals with aphasia.

BACKGROUND: To enhance communicative ability and thereby the possibility of increased participation of persons with aphasia, the use of communication strategies has been proposed. However, little is known about how persons with aphasia experience having conversations and how they perceive their own and their conversation partner's use of communication strategies. AIMS: To explore how people with aphasia experience having conversations, how they handle communication difficulties, and how they perceive their own and their communication partners' use of communication strategies. METHODS & PROCEDURES: Semi-structured interviews were conducted with four women and seven men with chronic aphasia (n = 11). Interviews were video-recorded, transcribed verbatim and analysed by qualitative content analysis. OUTCOMES & RESULTS: Informants appreciated having conversations despite the fact that they perceived their aphasia as a serious hindrance. Different factors related to the informants, the conversation partners, the conversation itself and the physical environment were perceived to impact on conversations. The importance of the communication partners' knowledge and understanding of aphasia and their use of supporting conversation strategies were acknowledged by the informants. The informants' views on using communication aid devices or strategies varied considerably. Four themes that characterized the informants' narratives were: loss and frustration, fear and uncertainty, shared responsibility based on knowledge, and longing for the past or moving forward. CONCLUSIONS & IMPLICATIONS: The informants longed to regain their former language ability and role as an active participant in society. To enhance participation of persons with aphasia, it is suggested that communication partner training should be an important and integral part of aphasia rehabilitation. Important elements of such training are reflecting on communication behaviours, training in real-life situations, and acknowledging each individual's special needs and preferences. To deal with the consequences of aphasia, counselling and psychological support may be needed.

Group intervention for siblings of children with disabilities: a pilot study in a clinical setting.

PURPOSE: To study the effectiveness of a group intervention in a clinical setting designed to increase knowledge of disability and improve sibling relationship among siblings of children with disabilities. METHOD: A self-selected sample of 54 younger and older siblings with typical development (ages 8-12 years) of children with attention deficit hyperactivity disorder (ADHD) (9), Asperger syndrome (7), autistic disorder (13), physical disability (8) and intellectual disability (17) participated in collateral sibling groups. The Sibling Knowledge Interview (SKI) and Sibling Relationship Questionnaire (SRQ) were administered pre- and post-intervention. RESULTS: SKI scores increased (p < 0.001) from pre- to post-intervention when merged diagnostic groups were compared. Comparisons of SRQ pre- and post-intervention scores across diagnostic sibling groups showed significantly different (p < 0.05) score patterns. CONCLUSIONS: The results were encouraging and contribute to further development of interventions meeting the needs of siblings of children with disabilities. In view of the limited empirical research on group interventions for siblings of children with disabilities future work is needed to investigate the effectiveness of such interventions. Particular attention should be given to siblings of children with autism and siblings of children with intellectual disability.

Working with families of persons with aphasia: a survey of Swedish speech and language pathologists.

PURPOSE: The overall aim was to investigate how speech and language pathologists (SLPs), in Sweden are working with people with aphasia and their families and what their professional experiences are. METHOD: A cross-sectional study with a descriptive and comparative design. An 84-item study-specific questionnaire was sent to all Swedish SLPs, affiliated to SLOF (the Swedish professional association and trade union). RESULTS: The response rate was 72.5% (n = 758). Thirty per cent worked with people with aphasia and typically met with their families. The participants considered the involvement of families as very important, especially concerning providing information of aphasia and training of communication strategies. However, involvement of families was limited due to a shortage of time, but also to perceived limited skill and knowledge. CONCLUSIONS: There was an evident discrepancy between what the participants claimed to be an important part of their work, and their actual practice. It is suggested that to facilitate family intervention, this should be explicitly expressed in both local and national guidelines. The content of the SLP education, and the need of further education and implementation of new knowledge into clinical practice also requires consideration.

Comparison of reports by relatives and staff on living conditions of adults with intellectual disabilities.

Proxies typically serve as information providers in studies of persons with intellectual disabilities. However, little is known about the concordance between different proxy categories and how proxy characteristics influence the information provided. We compared 89 pairs of relative and staff reports on the living conditions of persons with intellectual disabilities, using percentage agreement and Cohen's kappa statistics. Results demonstrate differences between relative and staff reports for most of the domains investigated, with moderate agreement for objective items and fair agreement for subjective items. Relative and staff proxies contributed different information related to diverse viewpoints and varying types of information. Thus, we suggest that information provided by proxies should not be treated as being interchangeable but, rather, as complementary.

Classical and modern prejudice: attitudes toward people with intellectual disabilities.

In two studies, Study 1 and Study 2, we examine whether attitudes toward people with intellectual disabilities, like sexism and racism, consist of two forms-a classical and a modern, where the classical is overt and blatant and the modern is more subtle and covert. Self-report scales tapping these two forms were developed in Study 1. Based on confirmatory factor analyses, the results in Study 1 supported our hypothesis and revealed that the modern and classical forms are correlated but distinguishable. This outcome was replicated in Study 2. Construct and discriminatory validations of the scales provided further support for the distinction. The theoretical and practical importance of the results is discussed in relation to previous research on attitudes toward people with intellectual disabilities and other social outgroups.