Perceptions of Effective Support Services to Families with Disabled Children whose Behaviour is Severely Challenging: A Multi‐Informant Study

Abstract

Specialist short break services can make a vital contribution to retaining children within their families, but under some important conditions which this study has identified: notably, the management of complexity, the formation of trusted relationships and creation of tangible benefits for the family and for the child.

Respite care models and practices for persons with intellectual disability: A scoping review

“…Purposes related to caregivers included respite (ARCH National Respite Network 2015 ; Merriman & Canavan 2007 ; Southby 2017 ; Spooner 2020 ), stress alleviation and burden reduction (Chan 2008 ) and support (Kelly et al 2020 ; McConkey et al 2011 ). Purposes for care-recipients included respite (Department of Health 2007 ; Holmes et al 2010 ; McConkey et al 2011 ; Merriman & Canavan 2007 ; Southby 2017 ), a break from daily routine (Kiernan 2019 ), skills and independence development (Chan 2008 ; Southby 2017 ; Spooner 2020 ), social inclusion (Department of Treasury 2007 ; McConkey et al 2011 , 2013 ; Southby 2017 ), a place of safety (McClean et al 2007 ), prevention of institutionalisation, admission, placement breakdown or out-of-area placement (Dilks-Hopper et al 2019 ; National Health Services 2017b ), and access to enjoyable, stimulating, constructive and positive activities (McConkey et al 2011 ). Purposes for other recipients included family respite (Bigham et al 2017 ; Department of Health 2007 ; Department of Treasury 2007 ; Holmes et al 2010 ; McConkey et al 2011 ), family skills development (McConkey et al 2011 ) and student learning opportunities (Bigham et al 2017 ).…”

How the rights of all school students and teachers are affected by special educational needs or disability (SEND) services: Teaching, psychology, policy

“…Second, resources and expert staff can be transferred from special to inclusive schools. They can then support not only children with diagnosed SEND but also those in the early stages of developing SEND, to help to reduce and prevent their extra problems and needs (Beresford and Cavet, 2009;Goodey, 2015;Preparing for Adulthood, 2016;Luke et al, 2014;McConkey et al, 2013;Murphy and Fonagy, 2013;Morgan, 2009;Pearson, 2016). Crucially, they can also support countless borderline students with unidentified SEND.…”

“…Selective schools, and mixed-ability ones with such strict streaming that there is virtually a separate special school within a mainstream school, identify and treat students as either 'special' or 'normal'. Streaming tends to have negative effects on all groups (Johnston and Wildy, 2016) and socially it can increase difficulties for disabled or 'special' children and adults in joining in mainstream society when they and their 'normal' peers are not used to living, learning, playing and working together in the relaxed, respectful ways encouraged in inclusive schools (Alderson, 2013;Goodey, [1998] 2018;Franklin, 2013;Pearson, 2016;Preparing for Adulthood, 2016;McConkey et al, 2013). They learn to see one another as friends, co-learners, potential colleagues, partners, employees and, indeed, potential managers or politicians, with disabled people's voices being heard at every level of society.…”

Challenges and recommendations for advancing respite care for families of children and youth with special health care needs: A qualitative exploration

“…Given families' concerns, it is important to explore the perspectives of respite SPs and stakeholders (SKs) regarding respite care. Previous research reported that respite SP noted challenges with system accessibility and navigation, 22 funding inflexibilities, 28 service provision limitations and inefficiencies, 29 including inadequate supply of, 30 and training for respite workers, 26,28,29,31 and regional inequities in service provision 29,32 . The lengthy list of respite care system challenges is concerning given unmet respite care needs, 33 which may lead to hospitalization of CYSHCN 17 .…”

“…Previous research reported that respite SP noted challenges with system accessibility and navigation, 22 funding inflexibilities, 28 service provision limitations and inefficiencies, 29 including inadequate supply of, 30 and training for respite workers, 26 , 28 , 29 , 31 and regional inequities in service provision. 29 , 32 The lengthy list of respite care system challenges is concerning given unmet respite care needs, 33 which may lead to hospitalization of CYSHCN. 17 To address these challenges, respite SPs have identified the need for; ‘a one‐stop clinic for families’ 29 ,p.2554 effective communication between SPs/teams and families, 22 , 26 , 29 clearly defined respite worker roles, 34 together with calls for culturally responsive service processes 22 and person‐ and family‐centred approaches.…”