A Systematic Review of the Assessment of Support Needs in People with Intellectual and Developmental Disabilities

An evaluation of support needs is fundamental to the provision of services to people with intellectual and developmental disabilities. Services should be organized by considering the support that people need to improve their quality of life and enforce their rights as citizens. This systematic review is conducted to analyze the rigor and usefulness of the available standardized tools for assessing support needs, as well as the uses of their results. Several databases were consulted, including Web of Sciences, Scopus, PubMed, ProQuest Central, PsycInfo, ERIC, and CINAHL, and the 86 documents that met the review criteria were organized into four sections: (a) measurement tools, (b) descriptive/correlational studies, (c) predictive studies, and (d) interventions. The results showed that age, level of intellectual disability, adaptive behavior skills, the number and type of associated disabilities, and medical and behavioral needs affected the support needs of people with disabilities. Quality of life outcomes have been predicted by the individual’s support needs, explaining a significant percentage of their variability. The findings are useful in guiding assessments and planning interventions. Further research should address the effectiveness of specific support strategies and the development of social policies and indicators for inclusion that involve assessing support needs.

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Variables Within a Household That Influence Quality-of-Life Outcomes for Individuals With Intellectual and Developmental Disabilities Living in the Community

Research and Practice for Persons with Severe Disabilities ◽

10.1177/1540796914534632 ◽

2014 ◽

Vol 39 (1) ◽

pp. 3-10 ◽

Cited By ~ 4

Author(s):

Grace Lucille Francis ◽

Martha Blue-Banning ◽

Rud Turnbull

Keyword(s):

Quality Of Life ◽

Developmental Disabilities ◽

Intellectual And Developmental Disabilities ◽

Life Outcomes ◽

Quality Of Life Outcomes

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COVID-19, PEOPLE WITH IDD, AND QUALITY OF LIFE The COVID-19 Pandemic and Quality of Life Outcomes of People with Intellectual and Developmental Disabilities

Disability and Health Journal ◽

10.1016/j.dhjo.2021.101117 ◽

2021 ◽

pp. 101117

Author(s):

Carli Friedman

Keyword(s):

Quality Of Life ◽

Developmental Disabilities ◽

Intellectual And Developmental Disabilities ◽

Life Outcomes ◽

Quality Of Life Outcomes

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Quality of Life Outcome and Support Disparities Among People With More Severe Impairments

Intellectual and Developmental Disabilities ◽

10.1352/1934-9556-58.6.513 ◽

2020 ◽

Vol 58 (6) ◽

pp. 513-524

Author(s):

Carli Friedman

Keyword(s):

Quality Of Life ◽

Developmental Disabilities ◽

Outcome Measures ◽

Service Organizations ◽

Intellectual And Developmental Disabilities ◽

Life Outcomes ◽

Disability Service ◽

Organizational Supports ◽

Quality Of Life Outcomes

Abstract People with intellectual and developmental disabilities (IDD) with more severe impairments often face service disparities. The aim of this study was to explore not only disparities in quality of life outcomes for people with IDD with severe impairments, but also disparities in the supports they receive from disability service organizations. Our analysis of Personal Outcome Measures interviews from 1,300 people revealed people with severe impairments experienced quality of life disparities in most domains, attributed to the fact that they also received fewer organizational supports than people with less severe impairments. By paying attention to person-centered outcomes, including these disparities, organizations' roles can shift from just providing services to supporting people to achieve the outcomes that are truly important to them.

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The Impact of Human Service Provider Quality on the Personal Outcomes of People With Intellectual and Developmental Disabilities

Frontiers in Rehabilitation Sciences ◽

10.3389/fresc.2021.780168 ◽

2022 ◽

Vol 2 ◽

Author(s):

Carli Friedman

Keyword(s):

Quality Of Life ◽

Developmental Disabilities ◽

Human Service ◽

Service Providers ◽

Quality Data ◽

Support Needs ◽

Intellectual And Developmental Disabilities ◽

Human Service Providers ◽

Provider Quality

BackgroundQuality of life is multidimensional—influenced by individual, organizational, and environmental factors. As such, when examining personal outcomes, it is also important to consider meso and macro factors that contribute to people with intellectual and developmental disabilities' (IDD's) quality of life. While it is widely acknowledged that organizational factors contribute to people's quality of life, there is less research directly examining how the quality of human service providers contributes to people with IDD's personal outcomes. For these reasons, the aim of this study was to explore the relationship between provider quality and people with IDD's personal quality of life outcomes.MethodsUsing a multilevel linear regression we analyzed secondary Personal Outcome Measures® (personal outcomes) and Basic Assurances® (provider quality) data from 2,900 people with IDD served by 331 human service providers.ResultsPeople with IDD's personal outcomes, regardless of their support needs or other demographics, were significantly impacted by the quality of the human service providers they received services from—the higher the quality of the provider, the more personal outcomes they had present. In addition, the following demographic covariates were correlated with personal outcomes: gender; race; complex support needs; residence type; and organizations that offered therapy services.DiscussionWhile quality improvement initiatives may require a great deal of cost and time commitment from providers, our findings suggest the effort translates to improved personal outcomes among people with IDD. The ultimate goal of service providers should be improvement of quality of life among those they support.

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Measurable Indicators of CRPD for People with Intellectual and Developmental Disabilities within the Quality of Life Framework

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17145123 ◽

2020 ◽

Vol 17 (14) ◽

pp. 5123

Author(s):

Laura E. Gómez ◽

Asunción Monsalve ◽

Mª Lucía Morán ◽

Mª Ángeles Alcedo ◽

Marco Lombardi ◽

...

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Developmental Disabilities ◽

Citation Index ◽

Intellectual And Developmental Disabilities ◽

Russian Science ◽

Persons With Disabilities ◽

Russian Science Citation Index ◽

Meta Analyses

This article proposes the quality of life (QOL) construct as a framework from which to develop useful indicators to operationalize, measure, and implement the Articles of the Convention on the Rights of Persons with Disabilities (CRPD). A systematic review of the scientific literature on people with intellectual and developmental disabilities (IDD) was carried out, with the aim of identifying personal outcomes that can be translated into specific and measurable items for each of the CRPD Articles aligned to the eight QOL domains. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, the systematic review was conducted across the Web of Science Core Collection, Current Contents Connect (CCC), MEDLINE, KCI-Korean Journal Database, Russian Science Citation Index and SciELO Citation Index, for articles published between 2008 and 2020. A total of 65 articles focusing on people with IDD were selected. The results were grouped into four broad categories: conceptual frameworks used to monitor the CRPD; instruments used to assess the rights set out in the CRPD; recommendations on the use of inclusive research; and indicators or personal outcomes associated with specific rights contained in the CRPD.

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