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

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.

Quality-of-Life Outcomes of Older Adults with Severe Disabilities

2019 ◽  
Vol 44 (4) ◽  
pp. 237-250 ◽  
Author(s):  
Carli Friedman
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Community Integration ◽  
Social Supports ◽  
Severe Disabilities ◽  
Life Outcomes ◽  
Organizational Supports ◽  
Quality Of Life Outcomes ◽  
Abuse And Neglect

People with disabilities who age may have unique experiences and face different challenges than people without disabilities who acquire disabilities as they age. These unique challenges may be especially pertinent for people with severe disabilities who already face disparities in quality of life. Yet, there is little research specifically about the quality of life of older adults with severe disabilities, a population that has continued to grow due to advances in medicine and social supports. This study’s aim was to explore quality-of-life outcomes of older adults with severe disabilities. We analyzed Personal Outcome Measures® data from 800 people with severe disabilities aged 55 years old and older. Findings revealed most older adults with severe disabilities had less than half of the quality-of-life outcomes present. Specifically, we found that while most older adults with severe disabilities were healthy, safe, and free from abuse and neglect, the overwhelming majority were lacking in community integration, relationships, choice, and opportunities. Our findings suggest the lack of quality-of-life outcomes among older adults with severe disabilities were largely attributed to an absence of supports. When older adults with severe disabilities received individualized organizational supports, they had better quality of life.

The Influence of Residence Type on Personal Outcomes

2019 ◽  
Vol 57 (2) ◽  
pp. 112-126 ◽  
Author(s):  
Carli Friedman
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Outcome Measures ◽  
State Institution ◽  
The United States ◽  
Intellectual And Developmental Disabilities ◽  
Life Outcomes ◽  
Effective Community ◽  
Do So

Abstract Over the last 5 decades, the state institution census has decreased 85% in the United States. Despite these radical shifts away from institutionalization, people with intellectual and developmental disabilities (IDD) continue to struggle to be meaningfully included in the community. For these reasons, the aim of this study was to explore if and how residence type affects attainment of quality of life outcomes of people with IDD in the United States. To do so, we analyzed Personal Outcome Measures® interviews from approximately 1,350 people with IDD. Findings suggest much of what has historically been considered deinstitutionalization of people with IDD is transinstitutionalization, particularly with provider-owned or -operated settings. A systemic overhaul is needed to create an effective community infrastructure.

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

2020 ◽  
Vol 17 (24) ◽  
pp. 9494
Author(s):  
Miguel A. Verdugo ◽  
Virginia Aguayo ◽  
Victor B. Arias ◽  
Laura García-Domínguez
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Developmental Disabilities ◽  
Support Needs ◽  
Intellectual And Developmental Disabilities ◽  
Life Outcomes ◽  
Behavioral Needs ◽  
Measurement Tools ◽  
Provision Of Services

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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