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A Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families are Included in a Post-COVID World

Inclusion International
June 2021

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This report documents the experience of exclusion of people with intellectual disabilities and their families during the COVID-19 pandemic. These experiences reveal pre-existing structural inequalities that affected the lives of people with intellectual disabilities and their families before COVID-19, during the pandemic, and beyond, and this report raises up the voices of those most excluded in a time of global crisis and demands an inclusive COVID-19 recovery.

 

This report includes the experiences of people with intellectual disabilities and families across eight different issue areas. Across these themes, we examined how and why people with intellectual disabilities were left out and excluded in pandemic responses, what pre-existing conditions and inequalities contributed to their vulnerability and exclusion, and how future policy structures could begin to address both this immediate and systemic exclusion.

 

Together, these experiences and policy solutions form our global agenda for inclusive COVID-19 recovery, an action plan to ensure that government efforts to ‘build back better’ are inclusive of people with intellectual disabilities and their families.

A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System – Child version

AXELSSON, Anna Karin
ULLENHAG, Anna
ÖDMAN, Pia
2021

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Purpose: The aim was to culturally validate a questionnaire about children’s/youth’s participation to be used in a Swedish context.


Methods: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed.

 

Results: The interviews provided support for the questionnaire’s relevance by being a tool to assess important aspects of participation, to gain insights into one’s own/the child’s participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where “parades” are unusual in Sweden and therefore removed, while “singing in choir” was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. 

 

Conclusions: The questionnaire can be used for establishing meaningful goals and to potentially increase children’s participation.

A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

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This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

The effects of wheelchair mobility skills and exercise training on physical activity, fitness, skills and confidence in youth using a manual wheelchair

SOL, Marleen E
VERSCHUREN, Olaf
HOREMANS, Henricus
WESTERS, Paul
VISSER-MEILY, Johanna M A
DE GROOT, Janke F
Fit-for-the-Future Consortium
2021

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Purpose: To evaluate the effects of a combination of wheelchair mobility skills (WMS) training and exer- cise training on physical activity (PA), WMS, confidence in wheelchair mobility, and physical fitness. Methods: Youth using a manual wheelchair (n 1⁄4 60) participated in this practice-based intervention, with a waiting list period (16 weeks), exercise training (8 weeks), WMS training (8 weeks), and follow-up (16 weeks). Repeated measures included: PA (Activ8), WMS (Utrecht Pediatric Wheelchair Mobility Skills Test), confidence in wheelchair mobility (Wheelchair Mobility Confidence Scale), and physical fitness (cardio- respiratory fitness, (an)aerobic performance) and were analysed per outcome parameter using a multilevel model analyses. Differences between the waiting list and training period were determined with an unpaired sample t-test.

 

Results: Multilevel model analysis showed significant positive effects for PA (p1⁄40.01), WMS (p<0.001), confidence in wheelchair mobility (p<0.001), aerobic (p<0.001), and anaerobic performance (p<0.001). Unpaired sample t-tests underscored these effects for PA (p<0.01) and WMS (p<0.001). There were no effects on cardiorespiratory fitness. The order of training (exercise before WMS) had a significant effect on confidence in wheelchair mobility.

 

Conclusions: A combination of exercise and WMS training appears to have significant positive long-term effects on PA, WMS, confidence in wheelchair mobility, and (an)aerobic performance in youth using a manual wheelchair.

Prevalence, types, and combinations of multiple problems among recipients of work disability benefits

BRONGERS, Kor A
HOEKSTRA, Tialda
ROELOFS, Pepijn D D M
BROUWER, Sandra
2021

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Purpose: For persons on disability benefits who are facing multiple problems, active labour market poli- cies seem less successful. Besides health problems, these people perceive personal, social, and environ- mental problems. Since very little is known about these “non-medical” problems our aim was to explore the prevalence of clients experiencing multiple problems, the types and number of perceived problems, combinations of perceived problems, and associated characteristics in a group of work disability benefit recipients.

 

Methods: We performed a cross-sectional study, using self-reported data on perceived problems and socio-demographics, and register data from the Dutch Social Security Institute on diagnosed diseases and employment status. A convenient group of labour experts recruited eligible clients on work disability benefit.

 

Results: Of the 207 persons on work disability benefit, 87% perceived having multiple problems. Most reported problems were related to physical (76%) or mental (76%) health. Health problems most fre- quently occurred together with a mismatch in education, financial problems, or care for family members. Clients with lower education experienced significantly more problems than clients with an intermediate or high educational level.

 

Conclusions: Clients with multiple problems face severe and intertwined problems in different domains of life, and need tailored multi-actor work disability management.

Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

KALLESON, Runa
JAHNSEN, Reidun
ØSTENSJØ, Sigrid
2021

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Purpose: To explore participation in real-life activities during early childhood, compare children’s partici- pation based on motor function and investigate relationships between participation and parental empowerment.


Methods: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child partici- pation and parental empowerment.

 

Results: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.

 

Conclusions: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.

‘It’s been taken away’: an experience of a disappearing dyslexia diagnosis

CAMERON, Harriet
2021

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This research explores the experiences of Beth, a university student in the UK, as she comes to be labelled as ‘dyslexic’, and as she has her diagnosis taken away. Through use of Interpretative Phenomenological Analysis (IPA) and discourse analysis, the research seeks to understand how Beth made sense of these experiences, and to explore the discursive ‘life’ of dyslexia within this sense-making. The discussion in this paper proceeds chronologically through Beth’s story, from ‘struggle’, to ‘legitimation’ to ‘derogation’, and concludes with a call to recognise the role of diagnosis in the field of special educational needs (SEN) from a social constructionist and relational perspective.

Patients’ and communication partners’ experiences of communicative changes in Parkinson’s disease

JOHANSSON, Inga-Lena
SAMUELSSON, Christina
MULLER, Nicole
February 2021

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Purpose: The aim of the present study was to investigate the experiences of people with Parkinson’s disease and their close communication partners regarding disease-related communicative changes and participation in everyday conversations.

 

Materials and methods: Semi-structured qualitative interviews were conducted with six dyads consisting of a person with Parkinson’s disease and a close communication partner. The interview material was analysed through thematic analysis.

 

Results: The main theme was the experiences of barriers and facilitators for participation in conversations. Subthemes were experiences related to changes in voice and articulation, language and cognition, body language and facial expressions, fatigue, self-image, communicative initiative, and familiarity with conversation partner. The results show individual variation. A change observed in almost all dyads was the person with Parkinson’s disease participating less in conversations.

 

Conclusions: Assessment and interventions should be based on a broad perspective on communication, and individuals’ priorities should be foregrounded in intervention planning. Both the person with Parkinson’s disease and communication partners need to make adjustments for communication to work. Therefore, close communication partners should be included in assessment and intervention of communication in Parkinson’s disease from an early stage.

Participation and engagement in family activities among girls and young women with Rett syndrome living at home with their parents – a cross-sectional study

KRUSE GYLDHOF, Ditte
STAHLHUT, Michelle
EJLERSEN WAEHRENS, Eva
February 2021

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Purpose: To describe the extent of participation and engagement in family activities and explore variables potentially impacting on these factors in family activities among girls and young women with Rett syndrome (RTT) under the age of 21.

 

Materials and methods: The Child Participation in Family Activities (Child-PFA) questionnaire was sent to parents in the target group (n = 42). Additionally, age, number of siblings at home, ambulation level, clinical severity and level of hand function were recorded to explore possible impact. Data were analyzed using descriptive statistics, Fishers exact test and cross-tables.

 

Results: 23 families participated. Highest degrees of participation and engagement were seen in social and stationary family activities. Indoor activities were frequent and showed high levels of participation and engagement, Outdoor activities were infrequent and showed low levels of participation despite a high degree of engagement. Routine activities were frequent but showed moderate to low participation and engagement. A negative association was found between participation in watching a movie and number of siblings living at home, and positive associations between engagement and age in three family activities.

 

Conclusion: Therapists working with this target group may benefit from focusing on engagement in routine activities and modification of family activities.

Social classroom climate and personalised instruction as predictors of students’ social participation

ZURBRIGGEN, Carmen L A
HOFMANN, Verena
LEHOFER, Mike
SCHWAB, Susanne
2021

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Previous research has repeatedly confirmed that students with special educational needs (SEN) are generally less accepted by their peers. Although inclusive teaching strategies and classroom characteristics are frequently hypothesised to improve students’ social participation, empirical evidence is scarce. Therefore, the purpose of this paper is to investigate classroom characteristics and teaching practices that can help foster social participation, in general, and reduce the effect of lower social participation among students with SEN, in particular. The sample includes 518 students in 31 Grade 4 and 7 classes from Austria, of whom 99 are students with SEN. The results show that students with SEN receive fewer peer nominations and perceive their social participation to be lower compared to their peers without SEN. However, the association between SEN and self-perceived social participation is moderated by the social classroom climate, i.e. the difference becomes smaller when the social classroom climate is more positive. Furthermore, the higher the personalised instruction was rated by a student, the higher was his or her social status. The results suggest that interventions should focus not only on the improvement of individual students (with SEN) but also on changing the whole classroom environment.

Comprehensive support for pupils at risk of school failure in inclusive education: theory and school practice in the Czech Republic

SLOWÍK, Josef
GAŽÁKOVÁ, Eva
HOLEČEK, Václav
ZACHOVÁ, Markéta
2021

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The paper presents possibilities of comprehensive use of support tools for pupils at risk of school failure in the Czech primary schools practice in order to support the implementation of inclusive education. The research data obtained during the project implemented in the Pilsen region in period of 2016–2019 brought the results of assessment of new support tools that are not yet systemically introduced in the Czech educational system and commonly available for all schools, although these instruments seem to be very effective or even necessary for quality inclusive education. The most important new tools include the position of inclusion coordinator in schools, strengthening the counselling services available directly in schools, as well as new strategies for promotion of cooperation between the schools, families, and social services – including some specific techniques, such as parenting workshops on child support in education, case conferences with child’s participation or seminars for parents and teachers on collaboration with social services. However, the exploitation of the results of this research and assessment will depend largely on political decisions at both local and governmental levels.

Reducing albinism related stigma in Tanzania: an exploration of the impact of radio drama and radio interview

DE GROOT, T M M
VELDMAN, M
JACQUET, W
PETERS, R M H
VANWING, T
MEURS, P
2021

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Reducing stigma is key to improving the wellbeing of people with albinism in Tanzania. This study aimed to obtain more insight into the effects of two radio interventions with regard to albinism-related stigma: a radio drama and a radio interview. Assessment of the radio interventions was based on two attitude measurement instruments (The Albinism Explanatory Model Interview Catalogue Community Stigma Scale and the Albinism Social Distance Scale), an entertainment scale, and two informal (group) interviews. In total, 111 community members participated in the assessment prior to the radio drama, and 65 after. In the case of the radio interview, 123 community members participated in the assessment prior to the radio show, and 77 after. Following the radio drama, a significant reduction was found in terms of community stigma, and a reduction in social distance was found after both interventions. The entertainment score for both interventions was high, but significantly higher for the radio drama. The respondents indicated that they had gained more understanding of albinism as a result of the interventions, and were positive about this type of education. The current study shows that a radio show in which the listener interacts with someone with albinism can contribute to a reduction in stigma, and demonstrates that different types of radio intervention can have different outcomes.

Social media and disability advocacy organizations: caught between hopes and realities

GELFGREN, Stefan
INELAND, Jens
COCQ, Coppélie
2021

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This article examines the role of advocacy organizations and their use of social media within the field of disability in Sweden. How do the organizations negotiate digital media, and what are the (intentional or unintentional) consequences related to the use of social media? With focus on the representatives of advocacy organizations, we study how they reflect and act in order to balance various motives, and what challenges and ambiguities that arise. On one hand, there is a perceived need to be online and communicate with members and the surrounding society. On the other hand, digital communication induces a divide between those who have the resources to take part in such communication, and those who do not – in terms of digital competence, economy, age, cognitive abilities, technical equipment and digital connection. The heterogeneity of resources and target groups inevitably challenges both the ideals of inclusion and intentions of advocacy organizations.

Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol

KAMALAKANNAN, Sureshkumar
RUSHTON, Paula W
GIESBRECHT, Ed
RUSAW, David F
BOUZIANE, Selsabil-A
NADEAU, Melodie
MCKEE, Jennifer
GOWRAN, Rosemary J
KIRBY, R L
PEDERSEN, Jessica P
TASIEMSKI, Tomasz
BURROLA-MENDEZ, Yohali
TOFANIN, Marco
GOLDBERG, Mary
PEARLMAN, Jon
2020

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Purpose

Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.

 

Methods

This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.

 

Implications and dissemination

The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.

An overview of assistive technology products and services provided in Malawi

SMITH, Emma M
EBUENYI, Ikenna D
KAFUMBA, Juba
JAMALI-PHIRI, Monica
MACLACHLAN, Malcolm
MUNTHALI, Alister
2020

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Background

Assistive technology is the products and services used by individuals with functional limitations to enable participation in society and realisation of rights afforded by the United Nations Convention on the Rights of Persons with Disabilities. The Assistive Product List is a comprehensive list of products identified as essential for access through universal health coverage. Key stakeholders, including organisations of persons with disabilities, civil service organisations, academic organisations and government ministries are collaborating to integrate assistive technology into policy and develop a priority assistive products list for Malawi.

 

Objective

To understand the organisational characteristics of, and assistive products provided by, key stakeholders working in AT in Malawi.

 

Study Design

Online survey of representatives from key stakeholder organisations.

 

Methods

We surveyed representatives of key stakeholder organisations to gather information regarding assistive technology product and service provision in Malawi. Responses were analysed using counts for closed-ended questions, and conventional content analysis for open-ended questions.

 

Results

A total of 36 of the 50 APL products were provided by eight organisations. Related services were provided for 36 of the 50 APL products by twelve organisations. Five organisations reported providing both products and services. Products and services are largely funded by donation and provided free to those who require them.

 

Conclusion

A range of organisations in Malawi play a role in assistive product delivery and related services. Coordinated AP delivery and service provision is required at a national level which is sustainable and inclusive, and is based on identified needs of the Malawian population.

Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

HUANG, Mei-Zen
CHEN, Li-Li
HUNG, Shu-Ling
PUTHUSSERY, Shuby
2020

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People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.

Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

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Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

Teaching for inclusion – a review of research on the cooperation between regular teachers and special educators in the work with students in need of special support

PAULSRUD, David
NILHOLM, Claes
2020

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This article presents a review of qualitative research on interprofessional cooperation between regular teachers and special educators published from 2005 to 2019. The aim of the review was to gain knowledge about how different forms of cooperation take shape and about factors at multiple levels that facilitate or constrain cooperation as a means of achieving inclusion. In total, 25 studies were selected. The results are discussed in relation to Thomas Skrtic’s theory of bureaucracies within the school organisation in order to compare and analyse different forms of interprofessional cooperation and schools’ organisations of special educational work. Cooperative teaching, special educational consultations and mixed forms of cooperation were found to entail different benefits and challenges related to communication and the cooperating actors’ roles. Facilitating factors included personal chemistry, an equal distribution of power and responsibilities and support from the school management through provision of professional development and adequate planning time. In several studies, a flexible cooperation was argued to be hindered by curricular constraints and standardised testing. Education policy is therefore emphasised in this review as important for understanding the conditions under which school staff are responsible for inclusion.

Do both ‘get it right’? Inclusion of newly arrived migrant students in Swedish primary schools

TAJIC, Denis
BUNAR, Nihad
2020

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The aim of this article is to advance knowledge on how Swedish primary schools organise education and what strategies they deploy to ensure inclusion and attainment of newly arrived migrant students. The article is based on semi-structured interviews with 30 teachers and school administrators, and one-year of fieldwork undertaken in two multicultural urban primary schools in the Stockholm region. One of the schools initially places students in separate classes, while the other one places them directly into mainstream classes. Both are evoking inclusion and attainment as a reason for using their respective models. As such, do both ‘get it right’? Using inclusion as the theoretical and conceptual framework this article addresses the broader question: How is the meaning of inclusion constructed in the processes of its practical implementation in these two schools? The results show the ambitious tale of inclusion in both schools was, in the process of the construction of its meaning and implementation, reduced to some of its aspects. Teachers and school administrators are allowed to include or leave out of their model whatever they deem necessary, obsolete, expensive or unrealistic and still fitting under the umbrella of inclusion. Sometimes it works, sometimes it does not, and both schools ‘get it right’ and ‘wrong’ in some aspects.

Training for the HandbikeBattle: an explorative analysis of training load and handcycling physical capacity in recreationally active wheelchair users

KOUWIJZER, Ingrid
VALENT, Linda J M
BENNEKOM, Coen A M van
HANDBIKEBATTLE group
POST, Marcel W M
WOUDE, Lucas H V Van Der
GROOT, Sonja de
November 2020

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Purpose: (1) to analyze training characteristics of recreationally active wheelchair users during handcycle training, and (2) to examine the associations between training load and change in physical capacity.

 

Methods: Former rehabilitation patients (N = 60) with health conditions such as spinal cord injury or amputation were included. Participants trained for five months. A handcycling/arm crank graded exercise test was performed before and after the training period. Outcomes: peak power output per kg (POpeak/kg) and peak oxygen uptake per kg (VO2peak/kg). Training load was defined as Training Impulse (TRIMP), which is rating of perceived exertion (sRPE) multiplied by duration of the session, in arbitrary units (AU). Training intensity distribution (TID) was also determined (time in zone 1, RPE ≤4; zone 2, RPE 5–6; zone 3, RPE ≥7).

 

Results: Multilevel regression analyses showed that TRIMPsRPE was not significantly associated with change in physical capacity. Time in zone 2 (RPE 5–6) was significantly associated with ΔVO2peak, %ΔVO2peak, ΔVO2peak/kg and %ΔVO2peak/kg.

 

Conclusion: Training at RPE 5–6 was the only determinant that was significantly associated with improvement in physical capacity. Additional controlled studies are necessary to demonstrate causality and gather more information about its usefulness, and optimal handcycle training regimes for recreationally active wheelchair users.

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