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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.

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 special education resources and the general and the special education teacher’s competence on pupil mathematical achievement gain in inclusive classrooms

OPITZ, Elisabeth Moser
SCHNEPEL, Susanne
KRÄHENMANN, Helena
JANDL, Sarah
FELDER, Franziska
DESSEMONTET, Rachel Sermier
2020

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Research in inclusive settings is complicated by the nested relationships between the general education teacher (GET), the special education teacher (SET) and pupils. In this study, the impact of SET resource and selected variables of teacher competence (professional mathematical knowledge SET, attitude towards inclusion GET, classroom management GET) on the mathematical achievement gain of typically developing pupils (TYP) and pupils with intellectual disability (ID) was examined. Mathematical achievement was tested at the beginning of the school year (t1) and the end (t2) in 34 inclusive classrooms (sample ID: n = 42; sample TYP n = 525). IQ and gender – and the average mathematical achievement at class level in the sample TYP – were included as control variables. For pupils with ID, hierarchical regression modelling revealed that the mathematical knowledge at t1 explained most of the variance in mathematical achievement gain. For the group TYP, the results of a multi-level analysis showed that mathematical knowledge at t1, IQ and the average mathematical achievement at class level all had a positive effect on mathematical achievement gain. The more hours a SET was present in the classroom, the more the mathematical achievement of the group TYP increased. The other teacher competence variables had no apparent impact.

COVID-19 at the intersection of gender and disability: Findings of a global human rights survey, March to April 2020

McRAE, Amanda
May 2020

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This report is based on the results of a global survey conducted in March and April 2020, targeted at the personal experiences of women, girls, non-binary, trans, and gender non-conforming persons with disabilities and COVID-19. This survey, which was intended to be primarily qualitative, asked respondents to provide narrative information about the following topics: access to health services, including sexual and reproductive health services; rationing of healthcare; personal safety and violence; access to support services to meet daily living needs; and access to education, employment, and other income. The results are based on 100 respondents. Recommendations are given.

The effect of school leadership on implementing inclusive education: how transformational and instructional leadership practices affect individualised education planning

LAMBRECHT, Jennifer
LENKEIT, Jenny
HARTMANN, Anne
EHLERT, Antje
KNIGGE, Michel
SPÖRER, Nadine
2020

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Fostering equity by offering the best education possible to all students is one of the main goals of inclusive schooling. One instrument to implement individualised education is individualised education planning (IEP). IEP requires cooperation between special and regular teachers. From research on school leadership it is known that leadership styles are connected to the way, school leaders use their scope of action with respect to fostering collaboration. However, little is known about the relationship between the leadership of a school, the provision of structures for collaboration, and the implementation of IEP in an inclusive context. The article focuses on the question to what extent transformational (TL) and instructional leadership (IL) are connected to the provision of structures for collaboration and how TL and IL as well as structures for collaboration relate to the implementation of IEP directly and indirectly. Based on data of N = 135 German schools, a path model was calculated. It revealed medium relations between TL, IL, and structures for collaboration as well as a medium effect from structures to collaboration on implementation of IEP. The effect from TL towards implementation of IEP was fully mediated by structures for collaboration, while the effect from IL persisted.

Teachers’ strategies for enhancing shy children's engagement in oral activities: necessary, but insufficient?

NYBORG, Geir
MJELVE, Liv Heidi
EDWARDS, Anne
CROZIER, W R
2020

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Shy children can present challenges for teachers aiming at inclusive classrooms. Their educational attainments can be lower than their peers, they may have difficulties in adjustment to school and they can be at risk of meeting clinical criteria for social anxiety disorder. One recurrent finding is that they are often quiet across a range of school situations. The study reported here focused on teachers’ strategies to engage shy students in frequently occurring oral activities, such as group work, in elementary school classrooms. Data were gathered through post-observation stimulated-recall interviews with eight teachers who had experience of success with shy students and three focus groups with 11 similarly experienced teachers. The analysis examined teachers’ actions with these children to enhance their visible engagement in activities that require oral participation. The findings suggest that although teachers attended to the psychosocial aspects of student engagement, there was little emphasis on the pedagogic purposes of oral activities with these children. We conclude that more attention should be paid to the academic aspects of oral activities when aiming at inclusion for shy children.

What I think of school: perceptions of school by people with intellectual disabilities

VALENTIM, António
VALENTIM, Joaquim Pires
2019

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For people with intellectual disabilities who do not enter the labour market, school is usually the main chapter of their socialization with the wider society. Nevertheless, little is known about their long-term perceptions of this period. We conducted interviews and focus groups on the school experiences of 16 Portuguese adults with intellectual disabilities. Results show differences between older and younger participants in their accounts of social relations and educational methods, which result from changes in special educational policies in Portugal. Overall, members of both groups evaluate their school experience positively. Our results indicate that although there is a move towards more inclusive schools, discrimination is still prevalent. These results are discussed in terms of their psychosocial consequences, as well as their implications for educational policies, and inclusion. This study contributes to a better understanding of the school experiences of people with intellectual disabilities and how policies impact them.

Teachers talk on student needs: exploring how teacher beliefs challenge inclusive education in a Norwegian context

AAS, Hanne Kristin
2019

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This study explores teacher talk in the early phase of a project in a Norwegian elementary school where Lesson Study is used as a method for professional development. The study focuses on inclusion and aims to explore what beliefs about student needs and teacher role and responsibilities become evident, and how these beliefs can challenge development towards a more inclusive practice. To this end, content analysis is applied to audio recordings of teacher teams’ planning meetings. Despite an overall positive attitude towards inclusion, and inclusive structures in the school, findings point at factors in teachers’ beliefs that can challenge the inclusion process. These factors are: student needs understood as individual problems, adaptation understood as individualised and laborious and a limited view on teacher role, where their responsibility mainly regard academic learning.

Instating settings of emergency education in Vienna: temporary schooling of pupils with forced migration backgrounds

PROYER, Michelle
BIEWER, Gottfried
KREUTER, Linda
WEIß, Jekaterina
2019

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In the year 2015, Austria was one of the main European destinations of displaced persons. According to education authoritiesaround 15,000 children with a forced migration background of school age who arrived in Austria over the course of a few months from late2015 to the beginning of 2016 called for immediate and partly temporary solutions. Due to Austrian legislation and unlike other countries,every child living in Austria between the ages of six to fifteen (or for nine years of schooling) is entitled to receive compulsory education. Though the school administration of Vienna generally promotes an inclusive approach to education in regular schools, schools inneighbourhoods with a large refugee population were reportedly unable to provide appropriate and adequate education for all children. Inresponse, the local school authority in Vienna decided to establish temporary classrooms in refugee accommodations. This article describesand analyses the emergence of new educational structures from the point of view of university students and lecturers who took part in theone and a half years of its implementation. The article thereby aims to document specific perspectives on educational emergency measuresat a certain point of time. In both the primary and secondary sectors, the emergence of a new temporary field of specialised and exceptional education were observed and recorded in a thick description of dynamic processes of trans-institutional, trans-organisational, transprofessional, communal, and individual development. Thus, the article presents a multifaceted picture of problems in refugee education under exceptional circumstances. The findings illustrate how insufficient educational opportunities for those falling outside the age of compulsory schooling – in particular, preschool children as well as youth older than fifteen – diminish possibilities for the inclusion of these children within and beyond education.

A university’s response to people with disabilities in Worcester, Western Cape

MÜLLER, Jana V.
NED, Lieketseng
BOSHOFF, Hananja
October 2019

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Background: The call for institutions of higher education to foster interaction with communities and ensure training is responsive to the needs of communities is well documented. In 2011, Stellenbosch University collaborated with the Worcester community to identify the needs of people with disabilities within the community. How the university was engaging with these identified needs through student training still needed to be determined.

 

Objectives: This study describes the engagement process of reciprocity and responsivity in aligning needs identified by persons with disability to four undergraduate allied health student training programmes in Worcester, Western Cape.

 

Method: A single case study using the participatory action research appraisal methods explored how undergraduate student service learning was responding to 21 needs previously identified in 2011 alongside persons with disability allowing for comprehensive feedback and a collaborative and coordinated response.

 

Results: Students’ service learning activities addressed 14 of the 21 needs. Further collaborative dialogue resulted in re-grouping the needs into six themes accompanied by a planned collaborative response by both community and student learning to address all 21 needs previously identified.

 

Conclusion: Undergraduate students’ service learning in communities has the potential to meet community identified needs especially when participatory action research strategies are implemented. Reciprocity exists when university and community co-engage to construct, reflect and adjust responsive service learning. This has the potential to create a collaborative environment and process in which trust, accountability, inclusion and communication is possible between the university and the community.

 

 

African Journal of Disability, Vol 8, 2019

Supporting the enactment of inclusive pedagogy in a primary school

BRENNAN, Aoife
KING, Fiona
TRAVERS, Joe
2019

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While inclusion has generally been accepted as orthodoxy, a knowledge – practice gap remains which indicates a need to focus on inclusive pedagogy. This paper explores how teachers in the Republic of Ireland primary school were supported to develop inclusive pedagogy to meet the needs of learners with special educational needs (SEN). It is underpinned by a conceptual framework which combines an inclusive pedagogical approach and key principles of effective professional development (PD) arising from the literature, which informed the development of a professional learning community (PLC) for inclusive practice in a primary school. The impact of the PD on teachers’ professional practice was explored using an evidence-based evaluation framework. Analysis of interview and observation data evidenced that engagement with inclusive pedagogy in a PLC, underpinned by critical dialogue and public sharing of work, positively impacted teacher attitudes, beliefs, efficacy and inclusive practice. This research offers a model of support for enacting inclusive pedagogy.

Parental satisfaction with inclusion in physical education

WILHELMSEN, Terese
SØRENSEN, M. S
SEIPPEL, Ø
BLOCK, M. E
2019

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Knowledge is scarce on parental satisfaction with the inclusion of children with disabilities in physical education (PE). This study explored how parents’ satisfaction with inclusion in PE was associated with parental and child interpersonal and intrapersonal characteristics. Seventy-two parents of children with disabilities participated in the survey-based study. The results of the ordinary least square regression (OLS) and quantile regression (QR) indicated that the parents’ satisfaction with social inclusion in PE was associated with their attitudes towards inclusion in PE, perceived PE-related information sharing, and the type of disability and degree of physical inclusion. Parents’ satisfaction with pedagogical inclusion of children in PE was associated with their attitudes towards inclusion in PE, PE-related information sharing, and the children’s degrees of disability and physical inclusion. Furthermore, the QR estimates indicated that the explanatory strength of parental attitudes towards inclusion in PE varied with the degree of parental satisfaction with social and pedagogical inclusion of their children in PE. Practical and methodological implications of the findings are discussed.

Enabling appropriate personnel skill-mix for progressive realization of equitable access to assistive technology

SMITH, Emma M
GOWRAN, Rosemary Joan
MANNAN, Hasheem
DONNELLY, Brian
ALVAREZ, Liliana
BELL, Diane
CONTEPOMI, Silvana
ENNION (WEGNER), Liezel
HOOGERWERF, Evert-Jan
HOWE, Tracey
JAN, Yih-Kuen
KAGWIZA, Jeanne
LAYTON, Natasha
LEDGERD, Ritchard
MACLACHLAN, Malcolm
OGGERO, Giulia
PETTERSSON, Cecilia
POUSADA, Thais
SCHEFFLER, Elsje
WU, Sam
2018

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Background and Methods: This paper reviews the current capacity of personnel in enabling access to assistive technology (AT) as well as the systems and processes within which they work, and was reviewed, discussed, and refined during and following the Global Research, Innovation, and Education in Assistive Technology (GREAT) Summit.

 

Findings: Key concepts addressed include a person-centred team approach; sustainability indicators to monitor, measure, and respond to needs for service design and delivery; education, research, and training for competent practice, using the six rehab-workforce challenges framework; and credentialing frameworks. We propose development of a competence framework and associated education and training programs, and development and implementation of a certification framework for AT personnel.

 

Conclusions: There is a resolve to address the challenges faced by People globally to access assistive technology. Context specific needs assessment is required to understand the AT Personnel landscape, to shape and strengthen credentialing frameworks through competencies and certification, acknowledging both general and specific skill mix requirements.

Entering the SDG era: What do Fijians prioritise as indicators of disability-inclusive education?

SPRUNT, Beth
DEPPELER, Joanne
RAVULO, Kitione
TINAIVUNIVALU, Savaira
SHARMA, Umesh
2017

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Sustainable Development Goal (SDG) 4 is to ‘Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all’ and the targets and indicators for SDG 4 emphasise the importance of measuring outcomes for children with disabilities (United Nations, 2015b). This paper reports on findings from qualitative research investigating Fijian stakeholders’ priorities for measuring success of efforts within a contextually and culturally meaningful process of disabilityinclusive education; that is, achievement of SDG 4 for children with disabilities. The priorities are presented in light of the specific challenges in Fiji to fulfilling this goal. The research presented in this paper is one part of a much larger mixed method study funded by the Australian aid program that aimed to develop and test indicators for the education of children with disabilities in the Pacific (Sharma et al., 2016). Fijian researchers with lived experience of disability undertook key informant interviews and focus group discussions with 28 participants. The findings include the need for or role of: an implementation plan and resourcing to ensure the national inclusive education policy is activated; improved awareness and attitudes; competent, confident and compassionate teachers; disability-specific services and assistive technology; accessible buildings and transport; and the important role of special schools. Inclusive education reform requires that Fiji incorporates and builds on existing strengths in special and inclusive education to ensure that systems and people are prepared and resourced for inclusion. The paper concludes that targets within SDG 4 are compatible with priorities within Fiji, however additional indicators are required to measure locally-prioritized changes related to barriers which need to be addressed if Fiji is to make progress towards the higher-order targets of SDG 4.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

Disability inclusion in higher education in Uganda: Status and strategies

EMONG, Paul
ERON, Lawrence
2016

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Background: Uganda has embraced inclusive education and evidently committed itself to bringing about disability inclusion at every level of education. Both legal and non-legal frameworks have been adopted and arguably are in line with the intent of the Convention on the Rights of Persons with Disabilities (CRPD) on education. The CRPD, in Article 24, requires states to attain a right to education for persons with disabilities without discrimination and on the basis of equal opportunities at all levels of education.


Objectives: Despite Uganda’s robust disability legal and policy framework on education, there is evidence of exclusion and discrimination of students with disabilities in the higher education institutions. The main objective of this article is to explore the status of disability inclusion in higher education and strategies for its realisation, using evidence from Emong’s study, workshop proceedings where the authors facilitated and additional individual interviews with four students with disabilities by the authors.


Results: The results show that there are discrimination and exclusion tendencies in matters related to admissions, access to lectures, assessment and examinations, access to library services, halls of residence and other disability support services.

 

Conclusion: The article recommends that institutional policies and guidelines on support services for students with disabilities and special needs in higher education be developed, data on students with disabilities collected to help planning, collaboration between Disabled Peoples Organisations (DPO’s) strengthened to ensure disability inclusion and the establishment of disability support centres.

Development of a contextually appropriate, reliable and valid basic Wheelchair Service Provision Test

GARTZ, Rachel
GOLDBERG, Mary
MILES, Alexandria
MILES, Rory
PEARLMAN, Jon
SCHMELER, Mark
BITTMAN, Sarah Jonassen
HALE, Judith
2016

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Purpose:

Currently, there is no internationally accepted way to measure the competency of wheelchair service professionals. The International Society of Wheelchair Professionals aims to develop a Wheelchair Service Provision – Basic Test as a preliminary step towards establishing a certification process. 

 

Method:

A team of wheelchair service provision experts developed test questions and conducted alpha and beta testing in order to validate them. Low-performing test items were eliminated. A pilot test was then conducted, which focused on developing a pass score, determining language barriers and validating the test as a measure of competency. 

 

Results:

90 participants completed one of three versions of the Wheelchair Service Provision – Basic Test. A pass score of 70% was established and 135 questions were accepted for the final test. Analysis of variance indicated there was a difference in scores based on language (p = 0.001), but not based on experience level. This result motivated translation in to the United Nations’ official languages.

 

Conclusions:

The results indicate that the Wheelchair Service Provision – Basic Test is a valid method for measuring basic competency of wheelchair professionals. Additionally, researchers recommend a skills assessment to help to ensure only qualified wheelchair professionals receive the certificate.

Being black in a white skin: Beliefs and stereotypes around albinism at a South African university

PHATOLI, Relebohile
BILA, Nontembeko
ROSS, Eleanor
2015

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Background: Partly because of the legacy of apartheid, and despite being a constitutional democracy, South Africa continues to be a deeply divided society, particularly along racial lines. In this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation.

 

Objectives: The study endeavoured to explore the beliefs and practices regarding albinism within a South African university, and the availability of support services.

 

Method: The research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. Interviews were conducted with five students with albinism and 10 students without albinism.

 

Results: Findings confirmed the existence of myths and stereotypes regarding albinism. Students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition.

 

Conclusion: People with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. Results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof.

Assessing Parental Role as Resource Persons in Achieving Goals of Early Detection and Intervention for Children with Hearing Impairment

ANSARI, M S
2014

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Early detection and intervention for any degree of hearing loss is critical to the linguistic, social and educational development of children with auditory deficit. Since parents and family members are in a position to identify hearing loss at an early stage, they can play a vital role in achieving the goals of early identification and intervention for their children.

 

Purpose: This study was conducted to determine the age at which parents and significant others begin to suspect hearing impairmentin their children, and to advocate for using them as resource persons in the early detection of hearing loss.

 

Method: Parents of children with hearing impairment were retrospectively surveyed and interviewed to determine the age at which suspicion, diagnosis, fitting of amplification and initiation of interventions occurred.

 

Results: Interviews revealed the average age to be 16.5, 24.3, 31.7 and 33.4 months, for suspicion, diagnosis, fitting of amplification and initiation of early intervention for hearing loss respectively. The obtained age of suspicion is lower than the age of identification of hearing loss reported in Indian literature. The current study found delays in diagnosis and fitting of amplification, both of which are essential to initiate early remedial programmes which facilitate development of speech and language skills in children with hearing impairment. Surprisingly, it was found that these delays were caused by professional failures.

 

Conclusion: It is emphasised that parents are in the best position to detect hearing problems in their children, and can be effectively utilised as manpower/ equal partners in achieving the goal of early identification of hearing loss. The study outlines appropriate ways and means to facilitate early identification and provide effective intervention for children with hearing impairment.

Caregiver’s Involvement in Early Intervention for Children with Communication Disorders

MALAR, G
SREEDEVI, N
SURESH, C
2014

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Purpose: Since very young people benefit from early identification of communication disorders, the primary caregivers (generally the parents) become the fulcrum of the intervention services provided. This article deals with the measures taken to empower caregivers, as part of the early intervention services offered at the All India Institute of Speech & Hearing (AIISH) in Mysore city in India, and the impact this has had on their wards’ progress.

 

Method: A survey was conducted among the caregivers of 205 clients who availed of early intervention services. Five-pronged data were collected, pertaining to family demographic details, early intervention measures for their children with communication disorders, type and intensity of caregiver empowerment measures provided along with early intervention services, resultant caregiver participation in the education and training of their wards, and the consequent development in children with communication disorders. The mutual influences among these factors were analysed using simple correlation measures.

 

Results: The findings revealed that informal, but continuous and consistent efforts to empower parents, such as counselling and guidance, had a better impact. Empowered caregivers in turn contributed towards the education and training of their children with communication disorders, resulting in improved development of their wards’ communication skills and academic achievements.

 

Conclusion: The evidence adds strength to recommendations that caregiver empowerment and participation need to become integral components of early intervention services for young children with special needs.

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