Describing heterogeneity of unmet needs among adults with a developmental disability: An examination of the 2012 Canadian Survey on Disability

Zwicker, Jennifer; Zaresani, Arezou; Emery, J. C. Herb

doi:10.1016/j.ridd.2017.04.003

Cited by 66 publications

(67 citation statements)

References 24 publications

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“…Canadians with developmental disabilities face lower rates of labour force participation than any other disability group in the country [7,9,10]. In 2011, the employment rate of Canadians with disabilities aged 25-64 years was 49%, compared with 79% for those with no disability [11].…”

Section: Introductionmentioning

confidence: 99%

“…In 2011, the employment rate of Canadians with disabilities aged 25-64 years was 49%, compared with 79% for those with no disability [11]. While employment rates among persons with disabilities vary by type of disability, in Canada, persons with developmental disabilities have the lowest employment rate (24%) [7,9]. Beyond the economic impacts for this group, being unemployed also eliminates the associated non-income benefits of participation in the labour force (e.g., social inclusion, community involvement) while also limiting eligibility for work-triggered income or insurance programs [9].…”

Section: Introductionmentioning

confidence: 99%

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Prioritizing barriers and solutions to improve employment for persons with developmental disabilities

Khayatzadeh‐Mahani

Wittevrongel

Nicholas

et al. 2019

Disability and Rehabilitation

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Purpose: Persons with a developmental disability have the lowest rate of labour force participation relative to other disabilities. The widening gap between the labour force participation of persons with versus without disability has been an enduring concern for many governments across the globe, which has led to policy initiatives such as labour market activation programs, welfare reforms, and equality laws. Despite these policies, persistently poor labour force participation rates for persons with developmental disabilities suggest that this population experiences pervasive barriers to participating in the labour force. Materials and methods: In this study, a two-phase qualitative research design was used to systematically identify, explore and prioritize barriers to employment for persons with developmental disabilities, potential policy solutions and criteria for evaluating future policy initiatives. Incorporating diverse stakeholder perspectives, a Nominal Group Technique and a modified Delphi technique were used to collect and analyze data. Results: Findings indicate that barriers to employment for persons with developmental disabilities are multi-factorial and policy solutions to address these barriers require stakeholder engagement and collaboration from multiple sectors. Conclusions: Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities. Policy and decision makers need to address barriers to employment for persons with developmental disabilities more holistically by designing policies considering employers and the workplace, persons with developmental disabilities and the broader society. Findings call for crosssectoral collaboration using a Whole of Government approach. ä IMPLICATIONS FOR REHABILITATION Persons with a developmental disability face lower levels of labour force participation than any other disability group. Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities. Decision and policy makers need to address barriers to employment for persons with developmental disabilities holistically through policies guiding employers and broader societal behaviour in addition to those aimed at the individuals (such as skill development or training). Due to multi-factorial nature of barriers to employment for persons with developmental disabilities, policy solutions are wide-ranging and fall under the responsibility of multiple sectors for implementation. This calls for cross-sectoral collaboration using a "Whole of Government" approach, with shared goals and integrated responses.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Prioritizing barriers and solutions to improve employment for persons with developmental disabilities

Khayatzadeh‐Mahani

Wittevrongel

Nicholas

et al. 2019

Disability and Rehabilitation

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“…[1][2][3][4][5] The prevalence of NDD is estimated to be 5% to 9% of all children or 75% of all childhood disability. 10,11 The needs of children with NDD are heterogeneous, even within a single diagnosis, with varying support needs often extending beyond traditional health care to social services, rehabilitation, and education. 10,11 The needs of children with NDD are heterogeneous, even within a single diagnosis, with varying support needs often extending beyond traditional health care to social services, rehabilitation, and education.…”

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confidence: 99%

Generic preference‐based health‐related quality of life in children with neurodevelopmental disorders: a scoping review

Lamsal

Finlay

Whitehurst

et al. 2019

Develop Med Child Neuro

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AIM To describe how generic preference-based health-related quality of life (HRQoL) instruments have been used in research involving children with neurodevelopmental disorders (NDD).METHOD A systematic search of nine databases identified studies that used generic preference-based HRQoL instruments in children with NDD. Data extracted following the Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Review guidelines included type of NDD, instrument used, respondent type, justification, and critical appraisal for these selections.RESULTS Thirty-six studies were identified: four cost-utility analyses; 15 HRQoL assessments; five economic burden studies; three intervention studies; and nine 'other'. The Health Utilities Index (Mark 2 and Mark 3) and EuroQoL 5D (EQ-5D; three-level EQ-5D, five-level EQ-5D, and the youth version of the EQ-5D) instruments were most frequently used (44% and 31% respectively). The relatively low use of these instruments overall may be due to a lack of psychometric evidence, inconsistency in justification for and lack of clarity on appropriate respondent type and age, and geographical challenges in applying preference weights.INTERPRETATION This study highlights the dearth of studies using generic preference-based HRQoL instruments in children with NDD. The use of cost-utility analysis in this field is limited and validation of these instruments for children with NDD is needed. The quality of data should be considered before guiding policy and care decisions.

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“…The primary responsibility for the access and coordination of support services for children at risk of developmental delay or with a diagnosis of an NDD lies largely with families . This affects the family; over a child’s lifespan, families report an estimated average annual out‐of‐pocket cost of Can$10 000 to Can$30 000, reduced working hours and labour force participation, and a loss of community social supports .…”

mentioning

confidence: 99%

“…6 The primary responsibility for the access and coordination of support services for children at risk of developmental delay or with a diagnosis of an NDD lies largely with families. 5 This affects the family; over a child's lifespan, families report an estimated average annual out-of-pocket cost of Can$10 000 to Can$30 000, 7 reduced working hours and labour force participation, 7 and a loss of community social supports. 16 Caregivers also report a negative psychological toll; they contend with higher levels of stress, feelings of isolation and frustration, and physical and mental health issues than families without children with NDDs.…”

mentioning

confidence: 99%

Health care service for families with children at early risk of developmental delay: an All Our Families cohort study

Russell

Premji

McDonald

et al. 2019

Develop Med Child Neuro

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Aim This study examined children’s health care service use, mothers’ workforce participation, and mothers’ community engagement based on children’s risk of developmental delay. Method We used data from the All Our Families study, a prospective pregnancy cohort. Ages and Stages Questionnaire (ASQ) scores at year 2 indicated risk of developmental delay. To investigate the impact of risk of developmental delay when children were not diagnosed, a sensitivity analysis excluded reports of neurodevelopmental disorder (NDD) diagnosis at year 3. Outcomes were maternal reports of children’s health and allied health visits (and estimated costs), and maternal workforce participation and community engagement from year 2 to 3. Results Among 1314 mother–child dyads, 209 (16%) children were classified as being at risk of developmental delay by the ASQ, and 42 (3%) had a reported diagnosis of NDD. Risk of developmental delay was related to increased use of allied health care services (incidence risk ratio 5.04 [year 3]; 95% confidence interval 2.49–10.2) and health visits (incidence risk ratio 1.33 [year 3]; 95% confidence interval 1.14–1.54). The average expected allied health costs were greater for children at risk versus not at risk of developmental delay. However, when excluding children with reported diagnoses of an NDD from this analysis, increased service use and costs in the remaining at‐risk population were not observed. Community engagement and workplace participation among families did not differ on the basis of risk of developmental delay. Interpretation These results suggest increased health care service use by families of children at risk of developmental delay is driven by those receiving a diagnosis of an NDD in the subsequent year. What this paper adds Early developmental delay risk was related to health care service use and costs. Diagnosis of neurodevelopmental disorder drove increased health care service use and costs. Early developmental delay risk did not relate to parental workforce participation. Early developmental delay risk did not relate to community engagement participation.

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Describing heterogeneity of unmet needs among adults with a developmental disability: An examination of the 2012 Canadian Survey on Disability

Abstract: Improving labour force participation to be inclusive and accessible requires policy that considers the range of unmet needs that exist for persons with DD.

Cited by 66 publications

References 24 publications

Prioritizing barriers and solutions to improve employment for persons with developmental disabilities

Prioritizing barriers and solutions to improve employment for persons with developmental disabilities

Generic preference‐based health‐related quality of life in children with neurodevelopmental disorders: a scoping review

Health care service for families with children at early risk of developmental delay: an All Our Families cohort study

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