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Factors influencing access to early intervention for families of children with developmental disabilities: a narrative review
- Authors:
- SAPIETS Suzi J., TOTSIKA Vasiliki, HASTINGS Richard P.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(3), 2021, pp.695-711.
- Publisher:
- Wiley
Background: Early intervention (EI) can improve a range of outcomes for families of children with developmental disabilities. However, research indicates the level of access does not always match the level of need. To address disparities, it is essential to identify factors influencing access. Method: We propose a framework where access to EI is conceptualised as a process that includes three main phases. A narrative review examined potential barriers, facilitators and modifiers of access for each phase. Results: The process of access to EI includes the following: 1) recognition of need, 2) identification or diagnosis and 3) EI provision or receipt. Several factors affecting access to EI for each phase were identified, related to the family, services, the intersection between family and services, and the context. Conclusion: A broad range of factors appear to influence the process of access to EI for this population. Our framework can be used in future research investigating access. Broad implications for policy, practice and future research to improve access to EI are discussed. (Edited publisher abstract)
Early intervention services in Turkey: perspectives of south-eastern families
- Authors:
- BAYHAN Pinar, SIPAL R. Firat
- Journal article citation:
- International Social Work, 54(6), November 2011, pp.781-799.
- Publisher:
- Sage
Early intervention programmes can provide dramatic shifts in the competencies of children with special needs. In 2005, Turkey passed the Public Law for Individuals with Disabilities. In this law, the importance of early intervention is highlighted, which should be facilitated by a professional team to inform the families about the options and services available to them. These early intervention teams, comprising members of different professional domains, were set up in hospitals in order to serve families with respect to the new legislation. The purpose of this study was to explore families’ perceptions of the service delivery of early intervention support provided under this new legislation. In south-east Turkey, a total of 150 parents of children with cognitive disabilities were interviewed about their perception of service, including the information, guidance, and psychological support they were receiving. The findings demonstrate that the provision of services in the region varied greatly from one professional team task to the next. The team members often had difficulties in sharing responsibilities, as well as completing mandated tasks. Implications for the improvement of service delivery are discussed.
Meeting the needs of parents in early childhood intervention: the educational partnership with parents-good practice and challenges
- Author:
- PRETIS Manfred
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 8(2), June 2011, pp.73-76.
- Publisher:
- Wiley
There is a general consensus that the effectiveness and efficiency of early childhood intervention (ECI) for children with disabilities is correlated with the active involvement and full participation of parents. This article considers how to improve parent participation in ECI. It considers: the parameters associated with parent participation; why parents should be involved in ECI programmes; the impact of parent participation; and aspects of best practice to increase participation. Parent participation requires a general understanding of each family's needs and desires and specific strategies for determining what each family needs to achieve the outcomes they desire. Studies looking at the effect size of parent participation in ECI programmes shows that the effects vary significantly between different programmes but are in general small. However, a small number of programmes show good effects, and the characteristics of these programmes are discussed. The article highlights the importance of shared understanding and shared decision between professionals and parents as a main predictor of high outcome in ECI.
Family subtyping and early intervention
- Authors:
- MARGALIT Malka, AL-YAGON Michal, KLEITMAN Talia
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 3(1), March 2006, pp.33-41.
- Publisher:
- Wiley
The goal of the study was to identify and differentiate subgroups among mothers whose infants were diagnosed as having a developmental disability. The sample consisted of 80 mothers from intact families in Israel whose infants had such diagnoses, most of whom were diagnosed with Down syndrome. All mothers were receiving early intervention services. Acknowledging the mothers' heterogeneous reactions to their situation, the study attempted to identify discrete family profiles, based on mothers' sense of coherence as a measure of personal strength and family cohesion as a measure of systemic support. Four family subtypes were identified. The authors examined experiences of stress, coping, and affect among these subgroups. Significant differences emerged among these four subgroups in mothers' stress experience, as well as their negative and positive moods. Relations between mothers' strengths and their needs are discussed as related to the early intervention program.
Educational programmes for children with special needs in Jordan
- Author:
- HADIDI Muna S.Z.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 23(2), June 1998, pp.147-154.
- Publisher:
- Taylor and Francis
Describes the development of educational programmes for children with special need in Jordan. An overview of historical highlights and main problems and needs is presented. Provides information about current concerns and trends related to development of special education in Jordan, training of special education teachers, family problems, early intervention, and attitudes to mainstreaming.
Commentary on "The NICE guidelines and quality standards on learning disabilities and behaviour that challenges"
- Author:
- BUSK Mary
- Journal article citation:
- Tizard Learning Disability Review, 22(2), 2017, pp.82-86.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to provide a commentary, from a parent carer perspective, on Murphy’s overview of the NICE guidelines and quality standards on learning disabilities and behaviour that challenges. Design/methodology/approach: The paper discusses the NICE approach, the content of these specific guidelines and quality standards and considers their practical relevance, with a particular focus on families of children and young people with learning disabilities and behaviour that challenges. Findings: Gaps in research affect recommendations in some key areas including around transition and early intervention. Risk factors are not linked to clear recommendations for early identification and prevention. For families, additional work is needed to highlight where these guidelines fit with related national law and policies. Families also need to see how the guidelines can positively influence commissioners to improve life outcomes and avoid crises and deterioration in behaviour. Although NICE guidelines are often condition specific, many of our children and young people have co-existing conditions and so do not fit neatly into just one set of guidelines. That is why data collection is very important to understanding needs and to effective commissioning. There is a need to urgently identify and address the research gaps so that essential interventions are included in future NICE guidelines and standards. Originality/value: A family carer perspective suggests ways in which implementation of the NICE guidelines can be supported and argues for the importance of the further research that will strengthen future versions of the guidelines. (Publisher abstract)
Paving the way: early intervention for children with learning disabilities whose behaviours challenge
- Authors:
- CHALLENGING BEHAVIOUR FOUNDATION, COUNCIL FOR DISABLED CHILDREN
- Publishers:
- Challenging Behaviour Foundation, Council for Disabled Children
- Publication year:
- 2016
- Place of publication:
- London
Website containing a range of resources to provide families, professionals, staff, and commissioners with information about how to reduce challenging behaviour and to improve the wellbeing of children with learning disabilities. It brings together a range of resources, including: evidence of what works, what families have found helpful, videos, case studies and examples of good practice. Topics covered include: transition to adulthood, positive behaviour support; education, health and care; communication, providing support and service development. The website has been developed as part of the 'Paving the way', a joint project from the Challenging Behaviour Foundation and the Council for Disabled Children which worked in partnership with families and professionals to share and promote good practice and improve outcomes for children with challenging behaviour. (Edited publisher abstract)
Evaluation of the processes of family-centred care for young children with intellectual disability in Western Australia
- Authors:
- WILKINS A., et al
- Journal article citation:
- Child: Care, Health and Development, 36(5), September 2010, pp.709-718.
- Publisher:
- Wiley
Government early intervention services for children with intellectual disability in Western Australia have adopted the model of family-centred care. The aim of this study was to evaluate how well family-centred care is being practised, to describe the pattern of service utilisation and to identify factors influencing parental perceptions of family-centred care. The participants were parents of children aged 0-6 years with intellectual disability who were registered clients of Disability Services Commission, Western Australia. The parents completed a postal survey questionnaire about the frequency and type of services received and their perceptions of services using the Measure of Processes of Care (MPOC-56) questionnaire. Of 292 eligible families, 165 (59%) returned a completed questionnaire. While over 50% of children had contact with occupational, speech and physical therapists at least once per month, less than 20% of children had at least annual contact with either psychology or dental services. Families rated their satisfaction highest for ‘respectful and supportive care’ and lowest for ‘providing general information’. Individual item analyses indicated less satisfaction with ‘co-ordinated and comprehensive care’. Higher means were associated with more frequent contact with occupational therapy. Overall, respondents reported early intervention services for young children with intellectual disability provided satisfactory family-centred care. The frequency of contact with allied health professionals was positively associated with parental ratings of family-centred care. The study indicates under-servicing in dental care and psychology services.
Social work early intervention for young people with developmental disabilities
- Authors:
- MALONE Michael D., et al
- Journal article citation:
- Health and Social Work, 25(3), August 2000, pp.169-180.
- Publisher:
- Oxford University Press
Social workers' awareness of and formal involvement in family-centred early intervention for infants who are at risk or who have developmental disabilities has increased over the past 15 years. This article provides an overview of the definition and identification of developmental disabilities, and discusses the role of and challenges to social work in early intervention.
Early intervention and identification: finding the family
- Author:
- CARPENTER Barry
- Journal article citation:
- Children and Society, 11(3), September 1997, pp.173-182.
- Publisher:
- Wiley
Recent legislation, both in the UK and abroad, has underlined the need for strong interdisciplinary approaches to meet the diversity of special educational needs that exist in our child population. This multidisciplinary approach necessitates a change of focus. It recognises the parent, with their child, as central, implicit and fundamental to the early intervention team, and endorses their right to request appropriate access to services. Discusses how this change in approach to families of children with special educational needs will challenge some professionals and demand a radical reappraisal of the structure of their role and their style of delivery of early intervention.