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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.

Assessment of functioning and disability in patients with low back pain – the low back pain assessment tool. Part 1: development

IBSEN, Charlotte
SCHIØTTZ-CHRISTENSEN, Berit
NIELSEN, Claus Vinther
HØRDER, Mogens
SCHMIDT, Anne Mette
MARIBO, Thomas
2021

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Purpose: To present the process used to develop the low back pain (LBP) assessment tool including evaluation of the initial content validity of the tool.


Methods: The development process comprised the elements: definition of construct and content, literature search, item generation, needs assessment, piloting, adaptations, design, and technical production. The LBP assessment tool was developed to assess the construct “functioning and disability” as defined by the International Classification of Functioning, Disability and Health (ICF). Involvement of patients and health professionals was essential.

 

Results: The elements were collapsed into five steps. In total, 18 patients and 12 health professionals contributed to the content and the design of the tool. The LBP assessment tool covered all ICF components shared among 63 ICF categories.


Conclusions: This study presents the process used to develop the LBP assessment tool, which is the first tool to address all ICF components and integrate biopsychosocial perspectives provided by patients and health professionals in the same tool. Initial evaluation of content validity showed adequate reflection of the construct “functioning and disability”. Further work on the way will evaluate comprehensiveness, acceptability, and degree of implementation of the LBP assessment tool to strengthen its use for clinical practice.

A comparison of routine and case-managed pathways for recovery from musculoskeletal disorders in people in employment

BERGMAN, Beverly P
DEMOU, Evangelia
LEWSEY, James
MACDONALD, Ewan
2021

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Purpose: To compare outcomes in employed people from an enhanced routine management pathway for musculoskeletal disorders within National Health Service Scotland with an existing active case-management system, Working Health Services Scotland.


Materials and methods: The study comprised a service evaluation using anonymised routinely collected data from all currently employed callers presenting with musculoskeletal disorder to the two services. Baseline demographic and clinical data were collected. EuroQol EQ-5DTM scores at the start and end of treatment were compared for both groups, overall and by age, sex, socio-economic status, and anatomical site, and the impact of mental health status at baseline was evaluated.

 

Results: Active case-management resulted in greater improvement than enhanced routine care. Case-managed service users entered the programme earlier in the recovery pathway; there was evidence of spontaneous improvement during the longer waiting time of routine service clients but only if they had good baseline mental health. Those most disadvantaged through mental health co-morbidity showed the greatest benefit.

 

Conclusions: People with musculoskeletal disorders who have poor baseline mental health status derive greatest benefit from active case-management. Case-management therefore contributes to reducing health inequalities and can help to minimise long-term sickness absence. Shorter waiting times contrib- uted to better outcomes in the case-managed service.

Perspectives on assistive technology among older Norwegian adults receiving community health services

HALVORSRUD, Liv
HOLTHE, Torhild
KARTERUD, Dag
THORSTENSEN, Erik
LUND, Anne
2021

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Introduction: The western world is seeking increased implementation of assistive technology (AT) to meet the challenges of an ageing population. The objective of this study is to explore perspectives on AT use among home-dwelling older adults with or without cognitive impairment.

 

Methods: This study combines findings from a cross-sectional study with a questionnaire package (n = 83) and from qualitative individual interviews (n = 7) and is part of a larger study, the Assisted Living Project. Combining methods promotes complementary inquiries into a phenomenon.

 

Results: The participants already use ATs: TVs, social alarms, mobile phones, stove timers, electronic med- ical dispensers, PCs and tablet computers. They were both optimistic and skeptical of AT, and expressed different perspectives and expressed different perspectives on ATs in relation to usability, privacy and fear of losing personal face-to-face care.

 

Conclusions: This study reveals that older adults’ perspectives on AT are multifaceted and complex, and can partly be explained by the interacting factors in the HAAT model: person, technology, environment, and context. Further exploration in relation to older adults with health challenges, as well as ethical per- spectives on AT implementation, is required for this group.

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.

The impact of COVID-19 measures on children with disabilities and their families in Uganda

MBAZZI, Femke Bannink
NALUGYA, Ruth
KAWESA, Elizabeth
NIMUSIIMA, Claire
KING, Rachel
VAN HOVE, Geert
SEELEY, Janet
2021

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To understand the impact of the COVID-19 public health response on families of children with disabilities in Central Uganda we conducted phone interviews with parents and children during the first 5 months of the outbreak (March - July 2020). Most parents and children were well informed about COVID-19 and were keen to adhere to government prevention measures. The majority said lock-down measures had a negative effect on their mental and physical health, social life, finances, education and food security. Access to medical services and medication for chronic illness had been limited or absent due to restrictions in travel, some facilities restricting access, and limited financial resources. The majority of parents reported loss of work which resulted in difficulties in finding enough food and paying rent. Parents worried about children missing education and friends. We suggest greater attention to children with disabilities and their families when implementing mitigating and long-term responses.

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